Before Camryn started at Discovery Learning Center, I had enrolled Mason in a Pre-K program at the same elementary school I attended and worked at. In fact, she was one of the regular ed kids in the reverse mainstream program that I worked in years earlier. Funny huh? Her class day was from 7:30-1:30 and Camryns was 8:00-2:00. It worked out beautifully as far as drop off and pick up as they were within a mile of each other. And while I had mixed emotions about putting Camryn somewhere so young, I have to be honest and say that more of me wanted her to go than not. She needed the social interaction and one on one time with the therapists and I needed social interaction of my own, as well as some one on one time with myself, although I definitely could have benefitted from therapy as well.
At that point in my life I was like any other young mother with a pre-schooler and a toddler who stayed at home with their kids. Brad's work schedule was crazy and he was often gone from sunup till sundown, as well as most weekends. Home alone with the kids all day left me starving for adult interaction and dealing with Camryns issues on a daily basis was enough to make me put my head in a pillow and scream out my frustrations. I had Mason in school so she could make friends and learn independence, but also get a break from the constant focus on her sister. Before Camryn was born, Mason was the center of our world. The only child, only grandchild, smart as a whip and a wide eyed beauty. She was the golden child, attracting attention everywhere we went,positive attention that is,not the "why is your kid screaming and biting themselves" kind. When Cam was born, there was the usual shift in attention from older child to newborn, which Mason handled like a pro. When Camryn started showing signs of trouble, it felt like everything became about Camryn, because it did. Don't get me wrong, Mason was neglected by no means, but it became everybody else doing things with her instead of me because I was either taking her sister for a good neck stretch or hunting down some witch doctor in hopes he had some sort of potion or powder to fix my child. I was always at Masons school functions and read her stories at night, but as far as movies and Chuck E. Cheese's,that was courtesy of my brother and his girlfriend, my parents, and let's not forget Anna.
I put Camryn in school for very obvious reasons, but also because I feared that if I didn't have some sort of break or reprieve from this child I couldn't soothe or understand, that I would be on the front page of the local paper," Woman Loses it and Takes Up Residence in a Very Tall Tree." Like any mom, I needed a break, but not just from my kids. I needed time to think about something other than doctors, and syndromes and P.A.R.C. So everyday, after I kissed my babies goodbye for six hours, I parked my car at Coffee Pot Bayou and I walked. And I walked and walked and walked. Five miles everyday, following the bay as it wound through Old Northeast and the downtown waterfront. It was so freeing, no stroller to push,no sippy cups weighing me down, no rearranging toys to the left of the stroller. It was just me and the sun on my shoulders and I think I would have broken without it. Those walks kept me sane, kept me positive, kept me going. I have always been a walker, (funny that's my married name now) and with Mason I kept it up because she was such an easy baby. I'd plop her in the stroller and she'd ride till I was done. I think you already know that with Camryn it wasn't so easy. When she was very young, about two months, I remember trying to walk with the double stroller, Mason up front and Cams laying down in the back. Mace was fine, checking out the scenery, but Cams would scream and cry. At first I would ignore it, hoping she'd quiet down. But she was unrelentless, and of course she wouldn't take a pacifier like her supereasy sister had. It would turn out me walking five steps then stopping to soothe Camryn, five steps more, soothing again until finally I was like "Screw it!" and I bought a workout video which I did in my living room while the kids watched. It wasn't the same....at all.
The past year and a half had turned my life upside down and my mental stability was hanging on by a very tattered thread. With Brad working all the time and none of my other friends with babies having any clue what it was like to have a baby like Cam, I felt isolated and very alone. I never let on though, because at the time, I was still pretty shy and softspoken. Cams had only begun my transformation. I felt like I shouldn't complain, except to Brad, my mom and Anna, as those were the closest people to me and I knew they would understand. But to the rest of the world I showed a solid grin. Mace is fine,Brad is fine,I'm fine, Cam is fine. Still waiting for that Oscar.
I think it was the same week Camryn started school that she also started walking. It was a day I thought would never come. Mason walked the day she turned one. Some of my friends kids started at ten months. I guess Cam thought "I'll be walking the rest of my life. I'm gonna milk this carrying gig as long as I can." Up until this point she would crawl and scoot everywhere, as well as hitch a ride on my hip. When I would try to put her down and have her stand and put pressure on her feet she would go all jelly legs on me and lift her legs up.Mason would pull this stunt too when she was throwing a temper tantrum and I wanted her to walk. But Camryn would do it every time I tried to get her to stand. About a month before she started walking, I took her to the neurologist at All Childrens for an evaluation. Even though we'd already been to a neurosurgeon, I wanted to cover all our bases and be seen by anybody with a "Neuro" in their title. This particular neurologist came with high accolades and I was sure he would have an answer for Camryns mysterious ailment. After he examined her, read over her records and listened to my recount of her life so far, he left the room and came back with a copy of an article on "Sitting on Air Syndrome". Huh? I had told him about Camryns refusal to stand on her own,and I guess this "Sitting on Air" thing was the best he could come up with, even though it could explain NONE of her other delays. Basically the article talked about how researchers have found a small group of children who would lift their legs in the air when they were put down to stand. According to them, it was unexplainable but harmless and would eventaully correct itself. That's what I left his office with. A bad copy of "Sitting on Air Syndrome" and a bill for our copay. I would have rather he just said "I got nothing."
When she did finally take her first step I shouted with joy and I know my back threw a party. Yes! She did it, she's moving forward! So she's six months later than the books said she should be. She has torticollis, the therapist said this would happen. She'd be delayed at first, but eventually she would catch up and she was starting!! I was eager to see what skill she'd master next. Talking would be very nice. Maybe an interest in coloring? How about mimicking or playing with toys or ANYTHING NORMAL KIDS DO!
I waited for her to catch up, and eventually she was doing almost everything a typical two year old should be doing, only problem being by that time she was six.
Friday, July 30, 2010
Thursday, July 29, 2010
A Delayed Response
Disgusted with the medical community and it's lack of answers, but desperate for a reason why my daughter was so far behind, I went back to the pediatricians one more time and asked for a referral to the Early Intervention program for a developmental screening. The next week we drove to, you guessed it, All Childrens and made our way to the third floor. I really don't remember much about the intake process. I know there was a lot of paperwork and writing down things I had already written a hundred times before. Cams birthweight, how my pregnancy was, what my concerns were,etc. A sweet older woman called us back into a small room filled with toys. She looked at Camryn, visibly old enough to be walking yet crawling around on the carpet and she looked at me, who I'm sure looked tired and sad. "My daughter has Down Syndrome"she said, which I know was meant to comfort me and let me know she understood, but at that stage of the game, I was beyond comfort and although I thought it kind of her to try to make me feel at ease, I really didn't care about her or her daughter. It sounds horrible, but it's just where I was at that time.
A few minutes passed before three women came in, all young and pretty, holding clipboards and pens. They introduced themselves but I couldn't tell you who they were, just that they would be administering the tests to Camryn and doing her developmental eval. They asked me the same questions the rest of All Childrens had and then began the testing. "Camryn"they called to her."Hi Camryn. Camryyyyyn!" They were trying to see if she responded to her name, but of course she didn't. Then they got in front of her on the floor and put some wooden blocks out for her to play with. One of the women started stacking the blocks about three high and then asked Camryn if she could do it. Ha! Ladies, are you serious? Did you not just hear everything I told you? I knew they had to go through the testing even if it was completely obvious that Camryn couldn't do anyo of it for documentation, but to me it was yet another reminder that my daughter was so very far from where she should be. For the next hour and a half, there would be puzzles not put together, crayons put in Cams mouth instead of on the paper and countless failed attempts at getting Camryn to communicate or interact. Then, all three women stood up with their clipboards and walked out of the room. They were going to total Cams score and would return shortly with the results. I remember sitting there in that hard plastic chair, watching my little girl with her tilted head sitting on the floor, mouthing a bristle block and I wondered if there would ever come a day she would take that block out of her mouth and build a castle with it instead. I didn't think so.
Twenty minutes later, two of the women came back in with a paper printout about a mile long. They sat down across from me and began going over this number and that percentile. I was hearing them, but none of it caught my ear until we got to the last page bottom paragraph that read "At age fifteen months, Camryn has a severe developmental delay in all areas and is functioning on a five month level." I said nothing, just nodded and signed off on it. Inside my head the words "five months" were bouncing off one side of my brain to the other, but outside I was in a state of shock and just kept nodding and mmmm-hmmmming as they talked about the next steps. Camryn would be eligible for services provided by Early Intervention. She would need Occupational, Physical and Speech therapy. We would be signed up for the home teacher program, and someone would be sent out twice a week to work with Camryn for thirty minutes, reading books and singing songs. And at that point the Charlie Brown teacher voice kicked in and I heard nothin but "Mwa wah wa wah, mwa wah wa wah". My head was pounding out "five months,five months,five months" to the beat of my pulse. I picked up Cam, thanked the women for their help and got in the elevator,a sinking feeling in my stomach.
When the home teacher showed up for her first visit with Cams, guess what? She was a young twenty-something girl, with fresh polished toes and tan lines from her bathing suit straps.Basically me five years ago. She would tell me where Camryn should be at this stage (which I already knew) and what things I should work on with her (which I also already knew) and then she would sing "Twinkle,Twinkle" while I sat there thinking "Is this for real? I mean, it's great that you are singing to my kid, but how is this going to make her normal?" These visits went on for the next three months, until Camryn was eighteen months old and was able to attend a center for special needs children. We were referred there by Early Intervention, but the center was run by P.A.R.C., which for those of you not familiar with that stands for Pinellas Association for Retarded Citizens. Retarded? OMG, I had known about PARC my entire life and never gave it much thought because it had nothing to do with me and my idyllic childhood. But I do remember when I was a kid the word "retarded" was "not nice" as my mother would say and only used by the mean kids at school when they were picking on others. There was the stereotypical image of a "retarded" person with a wicked overbite,drool all over their chin, making loud sounds and waving their arms around. When I was nine, that's what retarded looked like. But now I was twenty-seven, looking in my rear view mirror at a baby with beautiful blue eyes and perfect lips, and I was driving her to a school for retarded citizens? I had known for many,many years that "retarded" was just another word for "slow". But over the years it had taken on such a negative connotation that hearing it always made me cringe and I would never dare use it. I cried so hard that morning that it was hard to see the road at times, but I couldn't control myself. It was one of those cries where you can't catch your breath and you're nose turns bright red. Camryn sat oblivious in her carseat. I got myself together as I pulled in the parking lot and lifted Cams out of the car. I held her close. I could smell her strawberry scented hair. I made sure to bathe her and dress her in something adorable, because I knew from working with kids,the better they smell and the cuter they look, the more likely they will be snuggled. I know it sounds bad, but it's true. We walked in and immediately I felt like I was back at my old job. There were kids in wheelchairs, kids with walkers, kids with tubes and ports and there was Camryn. I coudn't breathe, but I kept going, making my way to her classroom. Her teachers greeted us with big smiles and showed us around the room. They were talking to Cam and showing her toys, but of course she wasn't responding. She clung to me like a baby monkey to it's mother and when the time came for me to leave, we both teared up. The first day I took Mason to pre-school she had just turned two. We had talked about her going for weeks before and she knew that I would leave, but she would have a great time until I came back later that day to pick her up. She was excited and she felt secure becuase she knew I would be back. I literally walked her in, kissed her good bye and walked out. That was it. She didn't cry, she wasn't scared. It was flawless. With Camryn, there would be no explaining or talk of good times and no worries. I had never left her anywhere and she had no way of knowing where she was or if I would come back for her. Leaving her screaming at that gate was the hardest thing I had ever done. I held it together until I got in my car. I called Anna and as soon as I heard her voice, I lost it. I knew she would understand, that I wouldn't have to explain. And she did. Although everything up to this point had been stressful and scary and worrisome, it somehow seemed like a dream. But when I dropped Camryn off that day, it made it real, the PARC sign said so. And still, nobody could tell me why.
A few minutes passed before three women came in, all young and pretty, holding clipboards and pens. They introduced themselves but I couldn't tell you who they were, just that they would be administering the tests to Camryn and doing her developmental eval. They asked me the same questions the rest of All Childrens had and then began the testing. "Camryn"they called to her."Hi Camryn. Camryyyyyn!" They were trying to see if she responded to her name, but of course she didn't. Then they got in front of her on the floor and put some wooden blocks out for her to play with. One of the women started stacking the blocks about three high and then asked Camryn if she could do it. Ha! Ladies, are you serious? Did you not just hear everything I told you? I knew they had to go through the testing even if it was completely obvious that Camryn couldn't do anyo of it for documentation, but to me it was yet another reminder that my daughter was so very far from where she should be. For the next hour and a half, there would be puzzles not put together, crayons put in Cams mouth instead of on the paper and countless failed attempts at getting Camryn to communicate or interact. Then, all three women stood up with their clipboards and walked out of the room. They were going to total Cams score and would return shortly with the results. I remember sitting there in that hard plastic chair, watching my little girl with her tilted head sitting on the floor, mouthing a bristle block and I wondered if there would ever come a day she would take that block out of her mouth and build a castle with it instead. I didn't think so.
Twenty minutes later, two of the women came back in with a paper printout about a mile long. They sat down across from me and began going over this number and that percentile. I was hearing them, but none of it caught my ear until we got to the last page bottom paragraph that read "At age fifteen months, Camryn has a severe developmental delay in all areas and is functioning on a five month level." I said nothing, just nodded and signed off on it. Inside my head the words "five months" were bouncing off one side of my brain to the other, but outside I was in a state of shock and just kept nodding and mmmm-hmmmming as they talked about the next steps. Camryn would be eligible for services provided by Early Intervention. She would need Occupational, Physical and Speech therapy. We would be signed up for the home teacher program, and someone would be sent out twice a week to work with Camryn for thirty minutes, reading books and singing songs. And at that point the Charlie Brown teacher voice kicked in and I heard nothin but "Mwa wah wa wah, mwa wah wa wah". My head was pounding out "five months,five months,five months" to the beat of my pulse. I picked up Cam, thanked the women for their help and got in the elevator,a sinking feeling in my stomach.
When the home teacher showed up for her first visit with Cams, guess what? She was a young twenty-something girl, with fresh polished toes and tan lines from her bathing suit straps.Basically me five years ago. She would tell me where Camryn should be at this stage (which I already knew) and what things I should work on with her (which I also already knew) and then she would sing "Twinkle,Twinkle" while I sat there thinking "Is this for real? I mean, it's great that you are singing to my kid, but how is this going to make her normal?" These visits went on for the next three months, until Camryn was eighteen months old and was able to attend a center for special needs children. We were referred there by Early Intervention, but the center was run by P.A.R.C., which for those of you not familiar with that stands for Pinellas Association for Retarded Citizens. Retarded? OMG, I had known about PARC my entire life and never gave it much thought because it had nothing to do with me and my idyllic childhood. But I do remember when I was a kid the word "retarded" was "not nice" as my mother would say and only used by the mean kids at school when they were picking on others. There was the stereotypical image of a "retarded" person with a wicked overbite,drool all over their chin, making loud sounds and waving their arms around. When I was nine, that's what retarded looked like. But now I was twenty-seven, looking in my rear view mirror at a baby with beautiful blue eyes and perfect lips, and I was driving her to a school for retarded citizens? I had known for many,many years that "retarded" was just another word for "slow". But over the years it had taken on such a negative connotation that hearing it always made me cringe and I would never dare use it. I cried so hard that morning that it was hard to see the road at times, but I couldn't control myself. It was one of those cries where you can't catch your breath and you're nose turns bright red. Camryn sat oblivious in her carseat. I got myself together as I pulled in the parking lot and lifted Cams out of the car. I held her close. I could smell her strawberry scented hair. I made sure to bathe her and dress her in something adorable, because I knew from working with kids,the better they smell and the cuter they look, the more likely they will be snuggled. I know it sounds bad, but it's true. We walked in and immediately I felt like I was back at my old job. There were kids in wheelchairs, kids with walkers, kids with tubes and ports and there was Camryn. I coudn't breathe, but I kept going, making my way to her classroom. Her teachers greeted us with big smiles and showed us around the room. They were talking to Cam and showing her toys, but of course she wasn't responding. She clung to me like a baby monkey to it's mother and when the time came for me to leave, we both teared up. The first day I took Mason to pre-school she had just turned two. We had talked about her going for weeks before and she knew that I would leave, but she would have a great time until I came back later that day to pick her up. She was excited and she felt secure becuase she knew I would be back. I literally walked her in, kissed her good bye and walked out. That was it. She didn't cry, she wasn't scared. It was flawless. With Camryn, there would be no explaining or talk of good times and no worries. I had never left her anywhere and she had no way of knowing where she was or if I would come back for her. Leaving her screaming at that gate was the hardest thing I had ever done. I held it together until I got in my car. I called Anna and as soon as I heard her voice, I lost it. I knew she would understand, that I wouldn't have to explain. And she did. Although everything up to this point had been stressful and scary and worrisome, it somehow seemed like a dream. But when I dropped Camryn off that day, it made it real, the PARC sign said so. And still, nobody could tell me why.
Tuesday, July 27, 2010
All of this for a freakishly tall yellow bird?
If a bear growls in the woods and there is no one there to hear it does it still make a sound? I have no clue. However, I can confirm that if Cam screams in a jungle, EVERYONE within a five mile radius will hear it! How do I know this? Brad and I got a wild hair and decided to take the kids back to Busch Gardens yesterday.Oh yeah, haven't you heard? Brad and I, we're real dare devils, edge dwellers, luck pushers. Or...completely insane,the jury is still out on that one. I'm not sure how it came into play, but there we were one minute eating breakfast at the table, and the next pulling into the Busch Gardens parking lot. I guess we figured since we had done this just a week before and things went relatively well that we could do it again with the same results. And I guess we forgot that last week we had six other adults with us, which meant twelve extra arms and eyes, which really comes in handy when taking Cam... anywhere. But nonetheless, there we were, kids slick with sunscreen, me loaded down with a backpack full of extra clothes and Brad toting a cooler packed with water, string cheese and beer, which I need to take a moment to address. In the summer, Busch Gardens lifts their ban on coolers and allows you to bring one in, which can be no larger than 15x15, containing one sandwich per person, one drink per person and two snacks. Alcohol, however, is a big NO-NO.How else will they pay their execs such big bonuses if they can't charge park visitors six bucks a beer? Now, Brad was the one who had gone to the store and packed the cooler before we left, so I had no idea what was in there. I knew he had gotten the kids drinks and snacks, but not specifics. We get into the line where they rummage through your belongings and I hand the guy the cooler. As he's checking through it he's telling me how they have to inspect them because some people try to smuggle alcohol into the park and could I believe that. I shook my head in disgust and said something like "people are unbelieveable!" We get the all clear and head to the turnstyles. As we're waiting there Brad says," Pretty slick of me to camouflage my beer huh?" I looked at him with wide eyes and said "What beer?" Apparently my sneaky husband searched out a canned drink for the kids in coordinating colors with his Heineken Lite. The closest he could find was Sierra Mist, which apparently was great camouflage because the security guy looked right at it and passed us through! High five to Brad! Not only did he beat the system, he saved us about thirty bucks and lots of line time. Next time I'm packing the cooler and the kids will be drinking whatever beverage most resembles wine! So anyway, we get through the gates and I go pick up our little piece of paper gold, the pass that gets us to the front of the line with Camryn. Pass in hand, next stop stroller rental, and no not for newly four Natalie,but for seven and a half Camryn,who squeals in sheer delight at the thought of being buckled in and wheeled around. We go for the double, because last time we got a single and Cam was squished in it like a sardine in a can and the strap wasn't long enough to buckle. We get her secured, Brad's beer disguised in a Busch Gardens cup and we're off. Brad was so smart to start drinking.
Cam remembered last time we were there we had started off at Sesame Street, so she was fixated on seeing Big Bird. But we were fixated on seeing lunch, as the process of getting from the parking lot to the entrance was long, hot and completely burned off breakfast. The whole way there Cams was repeating "Big Bird, I wanna see Big Bird. I like his eyebrows. He wants licky face. Big Bird, Big Bird, BIG BIRD!" Lunch came and we were still hearing about Big Bird and his eyebrows. But we were way on the other side of the park, so Big Bird would have to wait. We decided to start off with the animals and made our way to the lemurs. There are no cages, just open areas with walls and big tempered glass viewing windows. As soon as she saw them, Cams started bouncing in the stroller shrieking "I wanna see Zaboombafoo" This is a show on PBS and the "star" is a lemur puppet. "I wanna be gentle with Zaboombafoo. I wanna pet his eyebrows." At this point in the trip, Cam had shown no signs of trouble, so I unbuckled her and let her go up to the window with her sisters. I was right next to her, right next to her and somehow she got her arm just far enough past me to scratch a little boys face who was standing beside me. He was only about five, cute as could be and startled to say the least. Thank God I had trimmed her nails the day before and filed them down to the skin, so she didn't draw blood. I was mortified, and plopped her back in the stroller. "No scratching!" I said as I wagged my finger in her face.UUUGGHH WHY???? I looked around to see if the little guy had run and told his mother. He was still with his older siblings so I asked all the adults in the area if he was their child to which they said no. I figured I would let them know my daughter had scratched him and I was sorry. But since I couldn't find them, oh well. If I can't find you in sixty seconds to let you know my daughter hurt your kid, then it never happened. Off to the hippos, which Cam would be viewing from the confines of her stroller. Mason and Natalie pressed their little hands and faces up against the glass, in awe of the giant creature before them. Camryn fussed to get out of the stroller, but there were several other small children around and I just couldn't risk it and it broke my heart. After watching the hippos float around in the water, we headed off to the lions, which were on the way to Big Bird. Cam was elated when she saw the majestic cat lying on the grass in front of her, just a plate of glass between them. "I wanna be gentle with him. I wanna give him cube cubes (Cam talk for kisses)." And had the glass not been there, she would have been up in that maneaters face, lips puckered and hands a flappin'. I love that girl! After admiring his eyebrows and whiskers, we moved on to the hyenas then zebras and giraffes, who also had brows to Cams liking, all the while hearing about Big Bird. Since we'd been viewing the animals from afar, we figured why not do the Rhino Rally safari ride and see them up close? Cams would be buckled in, all the kids can ride and we have our gold pass, so what could go wrong? We show our paper and are pointed to an area away from the general lines reserved for special pass holders and guests like Camryn, which I'm going to interject here and say that I don't think they've ever had a guest like Camryn, at least not any time I've been there.So, there we go, ready to wait in a shorter line and Cam is already tweaking up a storm. She saw a jeep pass by, but it wasn't the one we were riding and so she started freaking out before we even got in the line. Now I say line, but it was only about thirty people divided up five to a lane.But ya know, it may as well have been a line a hundred deep because Camryn wanted to get on that ride immediately, now, yesterday!!And let me tell you, she had no problem expressing her waiting frustration. She was screaming, flailing her arms, biting her hands, screaming some more. Brad kept trying to console her by touching her, but when she gets like this, touching her is like turning up the volume to your favorite rock song. It gets louder and more intense and you can feel every beat. Yep, that's what happened. At this point I hadn't even looked around at the crowd. I didn't need to anyway because Masons comment of "It makes me so mad when people stare at Camryn" clued me in that we were the rides opening act. Unable to get Cams calmed down with words,or songs and not able to soothe her with a touch, I decided to sacrifice my lower back in the name of family fun and pick her up, which usually stops the screaming. And it did, but the leg kicking and arm reaching continued and I was so scared she would hurt a child. I asked Brad to get behind us and Mason and Nat to get in front so the only people in the line of fire would be her family. But then, some kid decides to stray from the line and comes up the left of us, his head perfectly lined up with Cams size 13 sneaker. People, I have front and back coverage, but no side spotters so for God's sake keep your kids away! Luckily the ride attendant asked him to go back and then came over to us. "Is everything ok?"she asked. " You mean besides the fact that she has Autism? Oh yes then, everythings fine, just a little excited." I said with a cheesy smile. She turned out to be really sweet, trying to get Cams attention until our jeep pulled up. "I wish there was something I could do",she said to which I sarcastically replied,"Me too, me too!"
Our jeep finally showed, the ride lasted maybe three minutes and if we thought getting on was bad, we should have known to be very afraid of getting off. She screamed, tried to get back on, cried out "Do you want to sit back down honey?" and screamed some more. We literally dragged her back to the stroller, the object of everybodys attention. By this time I had had it with the stares.We weren't part of the attraction, we weren't in the brochure, so quit looking at us like you paid to see it. One family in front of us continued to turn around and look at Camryn as they were walking, so eventually I got fed up with it and although my shoulder devil had some great ideas, shoulder angel said "Just smile and wave", so I did. Now at this point in the day we had an important decision to make. The most feared ride at Busch Gardens was just around the corner and we needed to decide if we were going do it.Did we dare? It would be scary and there would be crying for sure. Were we up for it? We were very brave that day(or deleriously hot) and with our shoulders back and heads held high we fearlessly marched forward ready to take on the....carousel. Oh I forgot to say that it would be scary for Brad and I, not the kids, because the carousel, my friends, is Camryns most adored ride. It would make getting on and off Rhino Rally look like taking a nap. We scouted out the ride to see which horses were available, were they in the middle, did they go up and down(some don't surprisingly) and then, when the time was right I got in line first to secure a horse, while Brad walked ten steps behind, holding Camryns hands up above her head for the safety of other kids in line.We met up on the carousel ready to hoist her up and let the party begin. The only thing Cams loves more than a good spin, is a good spin on a moving horse going up and down all to creepy clown music. So you can imagine her joy at the sound of the bell signaling the ride would start. Thank goodness Brad was on it with me this time, because the week before it was just me and Cams was on an outside horse, no strap, and freaking out while not holding on. Oh yeah, in Cams book holding on is for wusses. This time we got a horse in the middle and Brad held onto her while I spotted him and helped Mace and Nat. I love to watch peoples faces while we're whirling around. I see them pointing and nodding at Cam, but I know it's all in good fun because she is just so immensely happy it makes them smile. So for two mintues, all is right with the world, and then the ride stops. I immediately spring into action, jogging to find the attendant and ask in desperation if we can stay on for the next ride. Cams can ride as long as she likes, he tells me, so we went around three more times. But it was getting late and there were still many things we wanted to do, so at the end of the fourth round, we decided to take her off and oh honey! The screaming and kicking and arm flailing completely trumped the incident at Rhino Rally. It was bad, really bad. And all Brad and I could do was roll with it. There was no curtain to hide behind, so magic cape to make us disappear. Most of the time it doesn't bother me and I consider myself pretty strong when it comes to things like that. But on days like that, when you've already been through this three times already, and the sun is beating down on you, and families that just stepped off the Better Homes and Gardens magazine cover are staring at you and your "weird, misbehaving child",it can be too much. I began to feel angry,very angry. "Quit staring at us!!!"I wanted to shout. "Ever heard of Autism? Well this is what it looks like! You're seeing it in 3-D people and you didn't even have to buy the glasses! Shows over now move on!" But of course I didn't. At this time, the only trick still up our sleeve was ice cream and now was exactly the time to play it. Mace and Nat got vanilla soft serve in a waffle cone and Cams got a big giant pickle! Yep we had a line of pregnant women following us around the park! Busy with her pickle, Cams was quiet and happy so we took that opportunity to let Mason and Nat play some games. When they had wasted enough money, we headed over to our final destination, Sesame Street, home of the one and only Big Bird. As soon as we stepped onto the iconic lane Cams started tweaking. There was Elmo and Cookie Monster and Zoe, so much to take in! She enjoyed riding the Cheetah Chase rollercoaster with Brad last time, so we decided to take her on the Grover rollercoaster. Well, not we, Brad, because I don't do roller coasters, kiddie or not. Natalie also wanted to ride and at her tender age of four she volunteered to ride alone because she knew Brad needed to ride with Camryn. Even Nat knew that if Cams rode alone bad and scary things could happen. Again, our special pass allowed Brad to go the front of the line, but just like Rhino Rally, there were still people ahead of them. Mason and I were on the ground and we could hear Camryn screaming from up on the boarding platform. Brad and Camryn get on and brave little Nat sits behind them by herself, nearly swallowed up by the seat. They ride, Cams has a blast, Nat nearly has a stroke and when they get off Cams is begging for more and Nat is trying to put her head back on.By this time it was raining and the sun was setting, not to mention Brad and I were over it. We were making our way out of the park when Mason spotted the object of Cams affection...Big Bird. He was there, in"person" taking photo opportunities in a small room. Because we didn't want to pay thirty dollars for Cam to pluck Big Bird bald, we decided to let her watch through the window She was overjoyed, jumping and hand biting! Big Bird noticed us and came over to the window, waving and dancing. The kids loved it and it was a great way to end the day. Tired, sunburnt and mentally gone, we headed for the tram. The tram! We had forgotten about the tram,another trigger for a Cam attack. And sure enough, as soon as she spotted it coming our way, she flipped. This time it was me holding her hands in air as she screamed and galloped through the line. And it gets better. The tram filled up before we could get on. Oh yeah, so there we were, with our daughter pulling a "Linda Blair", going totally beserk over missing the tram and everybody in line behind us is watching in horror as Cam did her thing. The worst of the day so far. Yes, I said so far, there is more. Finally another tram comes and Cam clamors on board. The rows only seat four, and Mason couldn't sit alone so once again, it was litte Nat who took the fall and sat next to Cam and at the end of the row, both of which could potentially be dangerous. And as feared, Cams was trying to pinch Nat which was making her lean the other way towards the opening. I grabbed both of Cams hands and was trying to calm her by singing close to her face a song about not biting our friends, which only made her scream and try to bite my lips as I was singing. Brad grabbed Nats hand and told her to hold on till we stopped, which seemed like forever. Cam screamed in excitment the whole time and I could see everyones reflection in the glass in front of us and they were all staring at Cams. I couldn't wait for the tram to stop, until it actually did and then I wanted it to keep going. Camryn was ticked that we had to get off and she proceeded to throw the biggest fit of the day in the parking lot as everyone exited the tram. By this time, I was like f*#@ it! Go for it Cams, get it all out, this ones for all the Autistic kids around the world. You wanna stare at us? Go ahead! You might want to take a video too, it will last longer! And so stare they did, all fifty or so of them. Parents, children, they couldn't help but watch, like a car wreck. And we could do nothing but continue to drag her to the car and hope no one thought we were kidnapping her or taking her against her will. And of course no one did because really, who is going to kidnap a screaming, biting kid? We make it to the car and shoved everything, even the kids, in. Finally in the privacy of our own vehicle where no one could stare or point. That night when I tucked Cam into bed, I asked her if she had fun. "Big Bird" she said, " I like his eyebrows. He likes licky face. Big Bird". I smiled, kissed her head and made a mental note that next time we even think about taking Camryn to Busch Gardens again, I'm going to make a much shorter trip to the t.v. and turn on Sesame Street instead. Who knew it would have been just as good?
Cam remembered last time we were there we had started off at Sesame Street, so she was fixated on seeing Big Bird. But we were fixated on seeing lunch, as the process of getting from the parking lot to the entrance was long, hot and completely burned off breakfast. The whole way there Cams was repeating "Big Bird, I wanna see Big Bird. I like his eyebrows. He wants licky face. Big Bird, Big Bird, BIG BIRD!" Lunch came and we were still hearing about Big Bird and his eyebrows. But we were way on the other side of the park, so Big Bird would have to wait. We decided to start off with the animals and made our way to the lemurs. There are no cages, just open areas with walls and big tempered glass viewing windows. As soon as she saw them, Cams started bouncing in the stroller shrieking "I wanna see Zaboombafoo" This is a show on PBS and the "star" is a lemur puppet. "I wanna be gentle with Zaboombafoo. I wanna pet his eyebrows." At this point in the trip, Cam had shown no signs of trouble, so I unbuckled her and let her go up to the window with her sisters. I was right next to her, right next to her and somehow she got her arm just far enough past me to scratch a little boys face who was standing beside me. He was only about five, cute as could be and startled to say the least. Thank God I had trimmed her nails the day before and filed them down to the skin, so she didn't draw blood. I was mortified, and plopped her back in the stroller. "No scratching!" I said as I wagged my finger in her face.UUUGGHH WHY???? I looked around to see if the little guy had run and told his mother. He was still with his older siblings so I asked all the adults in the area if he was their child to which they said no. I figured I would let them know my daughter had scratched him and I was sorry. But since I couldn't find them, oh well. If I can't find you in sixty seconds to let you know my daughter hurt your kid, then it never happened. Off to the hippos, which Cam would be viewing from the confines of her stroller. Mason and Natalie pressed their little hands and faces up against the glass, in awe of the giant creature before them. Camryn fussed to get out of the stroller, but there were several other small children around and I just couldn't risk it and it broke my heart. After watching the hippos float around in the water, we headed off to the lions, which were on the way to Big Bird. Cam was elated when she saw the majestic cat lying on the grass in front of her, just a plate of glass between them. "I wanna be gentle with him. I wanna give him cube cubes (Cam talk for kisses)." And had the glass not been there, she would have been up in that maneaters face, lips puckered and hands a flappin'. I love that girl! After admiring his eyebrows and whiskers, we moved on to the hyenas then zebras and giraffes, who also had brows to Cams liking, all the while hearing about Big Bird. Since we'd been viewing the animals from afar, we figured why not do the Rhino Rally safari ride and see them up close? Cams would be buckled in, all the kids can ride and we have our gold pass, so what could go wrong? We show our paper and are pointed to an area away from the general lines reserved for special pass holders and guests like Camryn, which I'm going to interject here and say that I don't think they've ever had a guest like Camryn, at least not any time I've been there.So, there we go, ready to wait in a shorter line and Cam is already tweaking up a storm. She saw a jeep pass by, but it wasn't the one we were riding and so she started freaking out before we even got in the line. Now I say line, but it was only about thirty people divided up five to a lane.But ya know, it may as well have been a line a hundred deep because Camryn wanted to get on that ride immediately, now, yesterday!!And let me tell you, she had no problem expressing her waiting frustration. She was screaming, flailing her arms, biting her hands, screaming some more. Brad kept trying to console her by touching her, but when she gets like this, touching her is like turning up the volume to your favorite rock song. It gets louder and more intense and you can feel every beat. Yep, that's what happened. At this point I hadn't even looked around at the crowd. I didn't need to anyway because Masons comment of "It makes me so mad when people stare at Camryn" clued me in that we were the rides opening act. Unable to get Cams calmed down with words,or songs and not able to soothe her with a touch, I decided to sacrifice my lower back in the name of family fun and pick her up, which usually stops the screaming. And it did, but the leg kicking and arm reaching continued and I was so scared she would hurt a child. I asked Brad to get behind us and Mason and Nat to get in front so the only people in the line of fire would be her family. But then, some kid decides to stray from the line and comes up the left of us, his head perfectly lined up with Cams size 13 sneaker. People, I have front and back coverage, but no side spotters so for God's sake keep your kids away! Luckily the ride attendant asked him to go back and then came over to us. "Is everything ok?"she asked. " You mean besides the fact that she has Autism? Oh yes then, everythings fine, just a little excited." I said with a cheesy smile. She turned out to be really sweet, trying to get Cams attention until our jeep pulled up. "I wish there was something I could do",she said to which I sarcastically replied,"Me too, me too!"
Our jeep finally showed, the ride lasted maybe three minutes and if we thought getting on was bad, we should have known to be very afraid of getting off. She screamed, tried to get back on, cried out "Do you want to sit back down honey?" and screamed some more. We literally dragged her back to the stroller, the object of everybodys attention. By this time I had had it with the stares.We weren't part of the attraction, we weren't in the brochure, so quit looking at us like you paid to see it. One family in front of us continued to turn around and look at Camryn as they were walking, so eventually I got fed up with it and although my shoulder devil had some great ideas, shoulder angel said "Just smile and wave", so I did. Now at this point in the day we had an important decision to make. The most feared ride at Busch Gardens was just around the corner and we needed to decide if we were going do it.Did we dare? It would be scary and there would be crying for sure. Were we up for it? We were very brave that day(or deleriously hot) and with our shoulders back and heads held high we fearlessly marched forward ready to take on the....carousel. Oh I forgot to say that it would be scary for Brad and I, not the kids, because the carousel, my friends, is Camryns most adored ride. It would make getting on and off Rhino Rally look like taking a nap. We scouted out the ride to see which horses were available, were they in the middle, did they go up and down(some don't surprisingly) and then, when the time was right I got in line first to secure a horse, while Brad walked ten steps behind, holding Camryns hands up above her head for the safety of other kids in line.We met up on the carousel ready to hoist her up and let the party begin. The only thing Cams loves more than a good spin, is a good spin on a moving horse going up and down all to creepy clown music. So you can imagine her joy at the sound of the bell signaling the ride would start. Thank goodness Brad was on it with me this time, because the week before it was just me and Cams was on an outside horse, no strap, and freaking out while not holding on. Oh yeah, in Cams book holding on is for wusses. This time we got a horse in the middle and Brad held onto her while I spotted him and helped Mace and Nat. I love to watch peoples faces while we're whirling around. I see them pointing and nodding at Cam, but I know it's all in good fun because she is just so immensely happy it makes them smile. So for two mintues, all is right with the world, and then the ride stops. I immediately spring into action, jogging to find the attendant and ask in desperation if we can stay on for the next ride. Cams can ride as long as she likes, he tells me, so we went around three more times. But it was getting late and there were still many things we wanted to do, so at the end of the fourth round, we decided to take her off and oh honey! The screaming and kicking and arm flailing completely trumped the incident at Rhino Rally. It was bad, really bad. And all Brad and I could do was roll with it. There was no curtain to hide behind, so magic cape to make us disappear. Most of the time it doesn't bother me and I consider myself pretty strong when it comes to things like that. But on days like that, when you've already been through this three times already, and the sun is beating down on you, and families that just stepped off the Better Homes and Gardens magazine cover are staring at you and your "weird, misbehaving child",it can be too much. I began to feel angry,very angry. "Quit staring at us!!!"I wanted to shout. "Ever heard of Autism? Well this is what it looks like! You're seeing it in 3-D people and you didn't even have to buy the glasses! Shows over now move on!" But of course I didn't. At this time, the only trick still up our sleeve was ice cream and now was exactly the time to play it. Mace and Nat got vanilla soft serve in a waffle cone and Cams got a big giant pickle! Yep we had a line of pregnant women following us around the park! Busy with her pickle, Cams was quiet and happy so we took that opportunity to let Mason and Nat play some games. When they had wasted enough money, we headed over to our final destination, Sesame Street, home of the one and only Big Bird. As soon as we stepped onto the iconic lane Cams started tweaking. There was Elmo and Cookie Monster and Zoe, so much to take in! She enjoyed riding the Cheetah Chase rollercoaster with Brad last time, so we decided to take her on the Grover rollercoaster. Well, not we, Brad, because I don't do roller coasters, kiddie or not. Natalie also wanted to ride and at her tender age of four she volunteered to ride alone because she knew Brad needed to ride with Camryn. Even Nat knew that if Cams rode alone bad and scary things could happen. Again, our special pass allowed Brad to go the front of the line, but just like Rhino Rally, there were still people ahead of them. Mason and I were on the ground and we could hear Camryn screaming from up on the boarding platform. Brad and Camryn get on and brave little Nat sits behind them by herself, nearly swallowed up by the seat. They ride, Cams has a blast, Nat nearly has a stroke and when they get off Cams is begging for more and Nat is trying to put her head back on.By this time it was raining and the sun was setting, not to mention Brad and I were over it. We were making our way out of the park when Mason spotted the object of Cams affection...Big Bird. He was there, in"person" taking photo opportunities in a small room. Because we didn't want to pay thirty dollars for Cam to pluck Big Bird bald, we decided to let her watch through the window She was overjoyed, jumping and hand biting! Big Bird noticed us and came over to the window, waving and dancing. The kids loved it and it was a great way to end the day. Tired, sunburnt and mentally gone, we headed for the tram. The tram! We had forgotten about the tram,another trigger for a Cam attack. And sure enough, as soon as she spotted it coming our way, she flipped. This time it was me holding her hands in air as she screamed and galloped through the line. And it gets better. The tram filled up before we could get on. Oh yeah, so there we were, with our daughter pulling a "Linda Blair", going totally beserk over missing the tram and everybody in line behind us is watching in horror as Cam did her thing. The worst of the day so far. Yes, I said so far, there is more. Finally another tram comes and Cam clamors on board. The rows only seat four, and Mason couldn't sit alone so once again, it was litte Nat who took the fall and sat next to Cam and at the end of the row, both of which could potentially be dangerous. And as feared, Cams was trying to pinch Nat which was making her lean the other way towards the opening. I grabbed both of Cams hands and was trying to calm her by singing close to her face a song about not biting our friends, which only made her scream and try to bite my lips as I was singing. Brad grabbed Nats hand and told her to hold on till we stopped, which seemed like forever. Cam screamed in excitment the whole time and I could see everyones reflection in the glass in front of us and they were all staring at Cams. I couldn't wait for the tram to stop, until it actually did and then I wanted it to keep going. Camryn was ticked that we had to get off and she proceeded to throw the biggest fit of the day in the parking lot as everyone exited the tram. By this time, I was like f*#@ it! Go for it Cams, get it all out, this ones for all the Autistic kids around the world. You wanna stare at us? Go ahead! You might want to take a video too, it will last longer! And so stare they did, all fifty or so of them. Parents, children, they couldn't help but watch, like a car wreck. And we could do nothing but continue to drag her to the car and hope no one thought we were kidnapping her or taking her against her will. And of course no one did because really, who is going to kidnap a screaming, biting kid? We make it to the car and shoved everything, even the kids, in. Finally in the privacy of our own vehicle where no one could stare or point. That night when I tucked Cam into bed, I asked her if she had fun. "Big Bird" she said, " I like his eyebrows. He likes licky face. Big Bird". I smiled, kissed her head and made a mental note that next time we even think about taking Camryn to Busch Gardens again, I'm going to make a much shorter trip to the t.v. and turn on Sesame Street instead. Who knew it would have been just as good?
Friday, July 23, 2010
Fine, but not really
I can't remember how long we had to wait for the results, but I know it seemed like forever. I waited by the phone,part of me wanting to get a call with a diagnosis and part of me wanting to get a call saying it had all been a dream. When I finally did hear from the geneticist, it was the answer I didn't want to hear. The tests showed nothing. "Her bones are fine, her blood is normal, her urine is as it should be and her EKG shows a perfectly beating heart. Sorry but there is nothing more we can do for you".
I sat there dumbfounded. How could nothing have shown up? My twelve month old daughter is not walking, talking or responding to her name and you're going to tell me the tests show nothing? I was frustrated beyond belief! Back to the pediatricians we would go.
This time he sent me to a neurlogical surgeon. His thinking was that maybe there was an issue with Camryn's brain that the CT scan didn't pick up on. So back to All Childrens we went. I didn't even need to steer my car we'd been there so many times. I walked into the surgeons office, my heart so heavy with despair and feeling so sorry for myself. Why was this happening? Why is it so different this time around? Why doesn't Camryn smile like Mason did? Why doesn't she pull herself up on the couch and waddle around the living room? Why doesn't she look at me when I call her name? Why did this happen to me? I sunk down in my chair and waited for our name to be called. It hadn't been five minutes before a young boy walked in with his mother and served me up a huge slice of fresh humble pie. He couldn't have been more than eleven, short and stocky with a soft, round face. His hair was cut in a buzz, which I assumed was his mothers doing for easy maintenance. It wasn't until he passed by me that I noticed the four inch scar on the side of his head. I overheard his mother say that he had a brain tumor and they were here to see if the surgery to remove it was successful or if it had returned. She was so matter of fact about it, no tears or shaken voice. She sat there smiling at her son as she spoke on her cell and I marveled at how calm she was. I suddenly felt embarrassed at my self pity. We were called and I scooped up Camryn to carry her back. We sat in the cold, stark exam room and waited again. I looked around at all the posters of brains and the nervous system and read all the pamphlets about all the things that could go wrong with them. I probably shouldn't have done that. When the doctor walked in, I immediately felt at ease. He was very unassuming and welcomed us with a warm smile. When I told him about Camryns torticollis and delays he told me that he himself had torticollis as a child. What? He said it eventually corrected itself but that when he got tired or sick the tilt could be slightly noticed. Okay, so if this guy had torticollis and now he is a neurosurgeon, maybe there is hope for Camryn after all. We talked about Cams history, birth story, APGAR scores, the usual and I went through all the specialists we had been to and all the tests that had been run. He listened, examined Cam and then told me he wanted to do an MRI on her head and neck to see if there was something other than torticollis causing the tilt and possibly the delays. The day of the MRI I was a nervous wreck. Because she was so young she would have to be put out for the procedure, which worried me to no end. We had to get there about two hours before the test to fill out paperwork and prep Camryn. About an hour into filling out forms that say I can't sue All Childrens if my daughter dies during the test, I noticed Camryns nose was running. Oh no! If there is ANY sign of illness, they cannot put a child under. I alerted the nurse, who paiged the doctor, who made the call to reschedule when her nose was dry. All the worrying and sleepless nights leading up to this day would have to be gone through all over again! So, two weeks later we returned to try it again. This time was a success, if you can call something like that a success. And when I got the call from the doctor with the results it was the same old story...nothing. Unbelievable!
I was starting to feel like maybe I was the one with the problem. Maybe I just needed to chill and do as the therapist and peditrician had said and just wait it out. Maybe Camryn really would be fine and be a normal three year old. Maybe I should see a neurosurgeon.
When I gave Brad the report he was just as shocked as I was. He too felt that this was more than a case of catch up. We felt so helpless but were determined not to give up. Back to the pediatricians office, another place I no longer had to steer.
This time, it was an otolarynologist, or ENT as they are more commonly known. And big surprise, it would be at All Childrens. Maybe Camryn has a hearing issue and that is why she is not responding or developing as she should. After all she was the ear infection queen and frequent ear infections can cause hearing loss so it made complete sense. Three weeks later I was sitting in a sound proofed booth, Camryn on my lap waiting to take the hearing test. Because she couldn't respond to the usual "put on these headphones and raise your finger when you hear a beep" tests, she was given one designed for babies and kids like her. Like I said it was a booth, very small and very strange. There was a cloth "bench" in the middle and on one side there was a plexiglass enclosure with a toy Big Bird holding cymbals and on the other side an enclosure with Cookie Monster blowing a horn. When we first sat down it was silent, but after a minute or two Big Bird started "playing" the cymbals and lighting up and I about had a heart attack. I would pass the hearing test, but would Cams. When Big Bird was done, silence again, and then Cookie Monster added his two cents. Again, he caught my attention, but Camryn was not consistently turning her head towards the sound. So, as we exited the booth I was not shocked to learn that this test too had been inconclusive. I think I've heard that one before.
Because we were not able to rule out hearing as the culprit, we needed to do a more involved test called an ABR, which would require Camryn to be given a sleeping pill so she would not mess with the electrodes that would be placed on her head. The test was given in a very tiny room, lit only by the computer screen. The first dose of sleep aid was administered and we waited the directed ten minutes for her to fall out. But ten minutes came and went. Then twenty then thirty. The tech had never experienced this with any other patient. They usually were out within the first fifteen minutes at most. But not Cams. Hadn't she heard the word on the street that Cams doesn't roll like the rest of 'em? So a second dose was given and again we sat and waited and again, the girl didn't blink. She did get lethargic, but she never went to sleep, but because we had to get this test done, I held her as still as I could while the tech performed the test, which turned out...you guessed it, normal! Her hearing was fine, however because of her constant ear infections, the ENT wanted to put tubes in. He also noticed that Camryn was "tongue twisted" meaning the little piece of skin that held her tongue to the bottom of her mouth was really short and he suggested a frontillectomy (sp?) which meant cutting that piece of skin and freeing up her tongue which may result in her being able to form words better. I wasn't thrilled about her going under anesthesia again but I was ecstatic about this whole tongue thing! I just knew that was going to make her start talking. Brad and I could hardly wait for surgery day, hoping that after our little girl would talk to us and her sister. But of course, the surgery came and went and we hung on every sound that Camryn made, straining to hear a word in it. We never did.
During this time, frustrated with traditional medicine, I began to seek out alternative ways of healing. I had heard about a kind of massage known as "craniosachral" which was known to help with torticollis. It was a really deep tissue massage at the base of the skull that worked to loosen that tight muscle and relieve the tilt. I signed Camryn up and off we went to get a rubdown. Only, this massage would be anything but relaxing. The masseuse was this older woman, no more than five feet tall and less than ninety pounds. She was the spiritual type, with crystals and beads all over the office and I just know she had a dream catcher over her bed. She was definitely out there, but I was willing to try anything. I knew Camryn was going to cry. In her young age she had been stretched, poked,and scanned more than most adults. Everytime someone touched her now she would cry. And the masseuse told me that this massage was very deep which could cause Camryn some discomfort. But it had been known to be highly successful in treating torticollis, so I held Camryns hands and let massuese "fix" my baby.
Three sessions in, and there was no improvement. Camryn screamed every time and I saw no reason to put her through it anymore. What else was left to try? Chiropractics! I had to drive to Timbuktu to find one who would work on such a young child, but I would have driven to the real Timbuktu if it meant helping my daughter. The Dr layed her on the exam table and of course, she needed an alignment (don't we all?) He was sure that a few more sessions of twists and turns and her tilt would be history. See you next week and don't forget to pay your seventy five dollars on the way out. I walked out knowing this wasn't the answer but I went back because I had to try. But after the second time, I just wasn't convinced and I told them I would call, but I never would.
Camryn was fifteen months old now, still not walking or talking and still not responding to her name. She was getting further and further behind her peers and I didn't know what else to do. It was a very dark time.
I sat there dumbfounded. How could nothing have shown up? My twelve month old daughter is not walking, talking or responding to her name and you're going to tell me the tests show nothing? I was frustrated beyond belief! Back to the pediatricians we would go.
This time he sent me to a neurlogical surgeon. His thinking was that maybe there was an issue with Camryn's brain that the CT scan didn't pick up on. So back to All Childrens we went. I didn't even need to steer my car we'd been there so many times. I walked into the surgeons office, my heart so heavy with despair and feeling so sorry for myself. Why was this happening? Why is it so different this time around? Why doesn't Camryn smile like Mason did? Why doesn't she pull herself up on the couch and waddle around the living room? Why doesn't she look at me when I call her name? Why did this happen to me? I sunk down in my chair and waited for our name to be called. It hadn't been five minutes before a young boy walked in with his mother and served me up a huge slice of fresh humble pie. He couldn't have been more than eleven, short and stocky with a soft, round face. His hair was cut in a buzz, which I assumed was his mothers doing for easy maintenance. It wasn't until he passed by me that I noticed the four inch scar on the side of his head. I overheard his mother say that he had a brain tumor and they were here to see if the surgery to remove it was successful or if it had returned. She was so matter of fact about it, no tears or shaken voice. She sat there smiling at her son as she spoke on her cell and I marveled at how calm she was. I suddenly felt embarrassed at my self pity. We were called and I scooped up Camryn to carry her back. We sat in the cold, stark exam room and waited again. I looked around at all the posters of brains and the nervous system and read all the pamphlets about all the things that could go wrong with them. I probably shouldn't have done that. When the doctor walked in, I immediately felt at ease. He was very unassuming and welcomed us with a warm smile. When I told him about Camryns torticollis and delays he told me that he himself had torticollis as a child. What? He said it eventually corrected itself but that when he got tired or sick the tilt could be slightly noticed. Okay, so if this guy had torticollis and now he is a neurosurgeon, maybe there is hope for Camryn after all. We talked about Cams history, birth story, APGAR scores, the usual and I went through all the specialists we had been to and all the tests that had been run. He listened, examined Cam and then told me he wanted to do an MRI on her head and neck to see if there was something other than torticollis causing the tilt and possibly the delays. The day of the MRI I was a nervous wreck. Because she was so young she would have to be put out for the procedure, which worried me to no end. We had to get there about two hours before the test to fill out paperwork and prep Camryn. About an hour into filling out forms that say I can't sue All Childrens if my daughter dies during the test, I noticed Camryns nose was running. Oh no! If there is ANY sign of illness, they cannot put a child under. I alerted the nurse, who paiged the doctor, who made the call to reschedule when her nose was dry. All the worrying and sleepless nights leading up to this day would have to be gone through all over again! So, two weeks later we returned to try it again. This time was a success, if you can call something like that a success. And when I got the call from the doctor with the results it was the same old story...nothing. Unbelievable!
I was starting to feel like maybe I was the one with the problem. Maybe I just needed to chill and do as the therapist and peditrician had said and just wait it out. Maybe Camryn really would be fine and be a normal three year old. Maybe I should see a neurosurgeon.
When I gave Brad the report he was just as shocked as I was. He too felt that this was more than a case of catch up. We felt so helpless but were determined not to give up. Back to the pediatricians office, another place I no longer had to steer.
This time, it was an otolarynologist, or ENT as they are more commonly known. And big surprise, it would be at All Childrens. Maybe Camryn has a hearing issue and that is why she is not responding or developing as she should. After all she was the ear infection queen and frequent ear infections can cause hearing loss so it made complete sense. Three weeks later I was sitting in a sound proofed booth, Camryn on my lap waiting to take the hearing test. Because she couldn't respond to the usual "put on these headphones and raise your finger when you hear a beep" tests, she was given one designed for babies and kids like her. Like I said it was a booth, very small and very strange. There was a cloth "bench" in the middle and on one side there was a plexiglass enclosure with a toy Big Bird holding cymbals and on the other side an enclosure with Cookie Monster blowing a horn. When we first sat down it was silent, but after a minute or two Big Bird started "playing" the cymbals and lighting up and I about had a heart attack. I would pass the hearing test, but would Cams. When Big Bird was done, silence again, and then Cookie Monster added his two cents. Again, he caught my attention, but Camryn was not consistently turning her head towards the sound. So, as we exited the booth I was not shocked to learn that this test too had been inconclusive. I think I've heard that one before.
Because we were not able to rule out hearing as the culprit, we needed to do a more involved test called an ABR, which would require Camryn to be given a sleeping pill so she would not mess with the electrodes that would be placed on her head. The test was given in a very tiny room, lit only by the computer screen. The first dose of sleep aid was administered and we waited the directed ten minutes for her to fall out. But ten minutes came and went. Then twenty then thirty. The tech had never experienced this with any other patient. They usually were out within the first fifteen minutes at most. But not Cams. Hadn't she heard the word on the street that Cams doesn't roll like the rest of 'em? So a second dose was given and again we sat and waited and again, the girl didn't blink. She did get lethargic, but she never went to sleep, but because we had to get this test done, I held her as still as I could while the tech performed the test, which turned out...you guessed it, normal! Her hearing was fine, however because of her constant ear infections, the ENT wanted to put tubes in. He also noticed that Camryn was "tongue twisted" meaning the little piece of skin that held her tongue to the bottom of her mouth was really short and he suggested a frontillectomy (sp?) which meant cutting that piece of skin and freeing up her tongue which may result in her being able to form words better. I wasn't thrilled about her going under anesthesia again but I was ecstatic about this whole tongue thing! I just knew that was going to make her start talking. Brad and I could hardly wait for surgery day, hoping that after our little girl would talk to us and her sister. But of course, the surgery came and went and we hung on every sound that Camryn made, straining to hear a word in it. We never did.
During this time, frustrated with traditional medicine, I began to seek out alternative ways of healing. I had heard about a kind of massage known as "craniosachral" which was known to help with torticollis. It was a really deep tissue massage at the base of the skull that worked to loosen that tight muscle and relieve the tilt. I signed Camryn up and off we went to get a rubdown. Only, this massage would be anything but relaxing. The masseuse was this older woman, no more than five feet tall and less than ninety pounds. She was the spiritual type, with crystals and beads all over the office and I just know she had a dream catcher over her bed. She was definitely out there, but I was willing to try anything. I knew Camryn was going to cry. In her young age she had been stretched, poked,and scanned more than most adults. Everytime someone touched her now she would cry. And the masseuse told me that this massage was very deep which could cause Camryn some discomfort. But it had been known to be highly successful in treating torticollis, so I held Camryns hands and let massuese "fix" my baby.
Three sessions in, and there was no improvement. Camryn screamed every time and I saw no reason to put her through it anymore. What else was left to try? Chiropractics! I had to drive to Timbuktu to find one who would work on such a young child, but I would have driven to the real Timbuktu if it meant helping my daughter. The Dr layed her on the exam table and of course, she needed an alignment (don't we all?) He was sure that a few more sessions of twists and turns and her tilt would be history. See you next week and don't forget to pay your seventy five dollars on the way out. I walked out knowing this wasn't the answer but I went back because I had to try. But after the second time, I just wasn't convinced and I told them I would call, but I never would.
Camryn was fifteen months old now, still not walking or talking and still not responding to her name. She was getting further and further behind her peers and I didn't know what else to do. It was a very dark time.
Thursday, July 22, 2010
Testing 1,2,3
The first day of Physical Therapy I pulled into the All Childrens Hospital parking gargage a nervous wreck. What were these people going to do to my baby? Was it going to hurt, would she cry, could they fix it? All these questions were pulsing through my head as I headed into the elevator, Masons tiny fingers wrapped around one hand and the awkwardly balanced baby carrier on the other. The bell rang and we stepped off onto a brightly lit corridor. There were lions and giraffes painted on the walls, I guess to help put the children at ease. I looked at Mason and she looked happy, I however was a ball of twisted nerves. And Cams, well she was pretty much how she still is today, completely unaware that anything bad may happen. She just sat there strapped in her carrier, looking up at dangling plushies hanging from the handle. We were greeted at the front desk by a friendly girl, who took us back to the therapy room. WOW! It was much bigger than I had anticipated and much brighter. And not nearly as "scary" as I thought it would be. There were colorful foam wedges for stretching and climbing. Deep blue squishy floor mats and lots and lots of toys. Two other children were getting therapy at that time and neither one appeared fearful or in pain. Okay, okay, this may be alright. Our P.T. was Lori, a woman in her thirties with big eyes and an even bigger smile. She was very sensitive to the situation, it being our first experience with any kind of therapy and took lots of time to explain torticollis to me and what things she would be doing with Camryn to help correct it. There would be lots and lots of stretching, strategic placement of Camryns favorite toys, and if those didn't take care of it, then possibly a plastic tubing "collar" to be worn each day. But hopefully we could avoid the whole collar thing. I peeled Cams out of the carrier and handed her over to Lori. And for the first few minutes she was fine, no worries. Then Lori started to gently stretch her neck and you would have thought she had told her my milk dried up because Camryn started screaming and crying and it was just horrible! My first instinct was to pluck my baby from Lori's arms and save her from this torture, but Lori, having done this job for quite a while, assured me the stretching was not hurting Camryn in any way. Was it uncomfortable?Possibly. Scary? Sure. But painful? No, it was just new and eventually she would get used to it. I hated watching her cry like that but I also hated the thought of her head always being titlted to the left more, so I put my trust in Lori and watched her every move, as I would be doing these stretches with her at home as well. Great!
Each week got a little easier, but unfortunately her tilt remained. Even though I was diligently stretching her twice a day as directed,placing all her toys to her left so she would be forced to turn in that direction,even holdhing her with her head stretched out on my arm while while her legs dangled free, her tilt was not improving, in fact it looked just as it had the first day of therapy. Lori was perplexed and though she knew I was so petrified of it, she suggested we start using the TOT collar. Crap! It's hard to explain what a TOT collar is, but I guess it could best be described as a clear rubber double layer "choker" held together by a plastic stint. It fit tight around her neck and was held together with velcro. It held her head up straight, giving her neck no leeway what-so-ever and for an hour each day she looked like a really little member of one of those African tribes you see on National Geographic with all those rings around their necks. She hated every minute of it and I hated it even more. She would scream and try to wriggle away as I fit it around her, but if this was going to help my dauhgter be a "normal" little girl, then I would do whatever it took.
By nowI we'd been in PT for about 3 months and Camryn was seven months old. Mason was two and a half and needless to say I was a bit busy. When we first began therapy, Lori warned me that when a child has torticollis or any physical challenge for that matter, the rest of their development may be temporarily delayed while they work to correct the issue. But not to worry, it's perfectly normal and with time they will eventually catch up with their peers. Okay, makes sense. So is that why she's not babbling or rolling over? More than likely she had said. Don't worry she said,she's just fine.
So along with the stretching and the collar sessions, Camryn aslo seemed to be constantly battling a cold. Her nose was an endless stream of mucus and at night she would breathe heavy as if very congested. A trip to the pediatrician would always confirm that she did in deed have another cold and that it had turned into an ear infection AGAIN! Ear infections and Camryn got along famously, so much so , they were rarely without each other. She was on a constant antibiotic regimen which would clear things up for a month or so and then the nose would start running again. This poor child with her tilted head and plugged up ears.But kids get ear infections right? And what else would you expect when going to a hospital every week for therapy? Hospital is just a fancy word for a giant germ hotel. I really didn't think too much of it, though I did keep in the back of my head that Mason was never this sick as a baby and she also came to therapy with us yet managed to stay well. Hmmmmmm. Well, the Dr. doesn't seemed alarmed and he is a doctor, so who am I to second guess?
At about 9 months of age, Camryn was still as tilted as Pisa and miles behind other babies her age. I questioned Lori again, "Why isn't she pushing up on her hands or making any sounds?" Again, my worries were met with assurances that all was well and not to rush things, in two years she will be exactly where she needs to be. Okayyyyy, if you say so. I have to say I really liked Lori. As a young mom at home all day with my kids, I was desperate for adult interaction, so I actually looked forward to therapy days, knowing I would be talking real words to someone my height! It was pretty pathetic, but you know we have all been there. And while Lori was highly experienced and extremely knowledgeable in her field, her field was Physical Therapy, not pediatric medicine of any kind, so for me to expect her to interact with my child twice a week for 30 minutes and be able to pick up that she has a neurological disorder was asking a bit much. But you know, for the longest time after Camryn's diagnosis I blamed her for not taking my concerns more seriously. It was only in the past several years that I realized, this girl was not the reason my child went undiagnosed for so long. Just like every other medical professional, she was going by the numbers and when you run the numbers, if you have a child who needs therapy that is not meeting their milestones on schedule, nine times out of ten it's because of the issue needing therapy.How was she to know she had "one in ten" as a patient?
Now in the meantime, I was also voicing my concerns to our pediatrician, who was a family friend. He was more of a friend from the past of my brothers, so he was not around Camryn outside of the office. He only saw her in fifteen minute increments and knew of her what I told him. By looking at her, her could tell she had Torticollis and that she was delayed in her development. But just as Lori had told me, that was normal in this situation. He was such a sweet guy and early in his career. It was 2003-2004 at this time and as I mentioned before, Autism was not really a word you heard much. I was a lot more reserved back then, a people pleaser and anti boat rocker. I was so worried about Camryn, but was looking into the face of a man who had spent years and years at medical school learning way more than I could ever hope to so if he says Cam's is ok, then she must be ok. But you know that little knot in your stomach, the one that twists and turns when something doesn't feel right? Well, it had been twisting and turning in my belly for months, pushing me to keep going, keep asking. I was embarrassed to ask the doctor to send us to a specialist. Embarrassed! Can you believe that? I am actually embarrassed at my embarrassment now because that was my baby and I knew something was wrong and I was too scared of what someone else might think if I asked for further testing. I'm saying this though because I know that a lot of other parents have been in or may be in this situation and I want them to know it's 100 percent okay to question the doctor, always. I mustered up the courage to ask for a referral about her neck. We were sent to an orthopedic surgeon who ordered a CT scan. She was scanned, results were read and...fine. Nothing there. I was so glad to hear that her neck was structurally sound but frustrated at the thought of having to go back to the drawing board when it came to the cause of her delays. Back at the pediatricians, I sat red faced in the chair as I asked him to send us to someone else. Who did he suggest we see next to figure out if something was going on? We were sent to a genetic specialist who stripped Camryn down to her diaper, took a Polaroid of her and ordered bloodwork, bone scans and a urinalysis. The testing was intense and again THANK YOU ANNA for taking the day off work and holding my hand. Brads job did not allow for him to miss work,so Anna came with me. It was horrible. The bone density scan was basically an X-Ray of every bone in her body and in case you're wondering, not so pleasant. There were two technicians in the room standing around a big examining table, which was actually an X-Ray machine. Camryn was to lay down flat on this cold, metal surface and stay completely still while they take scan, after scan after scan. Now, Camryn laying flat didn't happen easily. She just didn't like to do it, so that was the first challenge. Then Camryn laying still. I don't think I even need to explain. And the techs? I'm sure they were lovely girls, but I did not appreciate their lack of empathy for my little girl crying and scared on the table.They seemed annoyed. Camryn has always been abnormally strong, so when she doesn't want to do something, look out. It took the three of us to hold her down while the other tech took the X-Ray. We would get her contorted just the right way and then she would move, so we'd have to do it again. And all the time we were wearing those lovely lead aprons, which made it feel like we were doing it all under water. Oh, it was absolutely horrid! It took about an hour of pure hell and finally the last bone was scanned.Thank God! Off to the next test, the EKG. This one was almost comical. Here is my daughter, not quite a year old, obviously delayed in all areas including communication, and the tech sits her on the exam table, tells her to take off her shirt and lay still while she attaches the monitors to her bare skin. Yeah right! I had to sit behind Camryn on the lovely butcher paper covered mat and pull each of her hands behind her back so she wouldn't try to grab the monitors off AND keep her still. Haaa! Of course she wasn't holding still. She was wriggling like a fish caught in a net, crying and screaming and the technician from Planet Oblivion was telling her "Stay still! I can't run this test if you don't stay still!" Anna and I are just looking at each other thinking "What in the hell is this woman smoking?" Did you not read the chart woman? This child is delayed. Meaning not on age level. Meaning she is not going to follow your directions, okay? It was a complete nightmare and in the end she called the doctor and had him come in and sign off on the best reading she could get. I was a sweaty, wrinkled mess and Camryn's body was covered in red splotches and soaked from tears and we still had two more tests to go! Next was bloodwork, which I just knew was going to be awful, but surprisingly, it was one of the better tests.Of course she did not like being pricked with a needle, but it was quick and the phlebotomist was much more congenial than her co-workers. Finally, the last test of the day, the one I hadn't even thought to dread, the urinalysis. I don't know why it never crossed my mind that they would need to collect urine from my daughter who was still in diapers and would not understand to pee on command leaving them no choice but to catherize her. I had never had a catheter at that time but since have and I am soooo sorry Camryn. I knew enough to know it would be uncomfortable because putting a clothespin on your urethra rarely ends in laughter and good times. But I had no idea it would be such an unpleasant test. That techinician was the sweetest girl, thank goodness and I made sure to tell her how much I appreciated her patience and understanding. We took off Camryn's diaper and she began to insert the catheter which as you can imagine, caused Camryn to kick and scream. She somehow managed to get it in place and then...we waited. We layed her on the exam bed and held her hands, played pat-a-cake and anything else we could do to keep her from taking off her diaper and ripping out the catheter. It took about a good 30 minutes before she "voided" as they say in medical lingo. Whew! Done! Completely mentally and physically drained, I got Camryn dressed, strapped in her stroller and Anna and I took the elevator down to the lobby. When the doors opened, that part of the hospital was actually closed! That's how long we had been there. And if I thought I was tired, my poor baby! She was beat! Her cheeks were red, her hair in sweaty strands, her eyes watery and bloodshot,this day had taken everything she had. I hugged Anna goodbye in the parking lot and thanked her for being such an amazing friend. As I loaded Cams into her carseat I looked at her innocent little face and thought "She has no idea why her mother just put her through hell". I got on the highway and headed home, not knowing anymore about Camryns delays then when I got there and knowing there was nothing more I could do now, but wait.
Each week got a little easier, but unfortunately her tilt remained. Even though I was diligently stretching her twice a day as directed,placing all her toys to her left so she would be forced to turn in that direction,even holdhing her with her head stretched out on my arm while while her legs dangled free, her tilt was not improving, in fact it looked just as it had the first day of therapy. Lori was perplexed and though she knew I was so petrified of it, she suggested we start using the TOT collar. Crap! It's hard to explain what a TOT collar is, but I guess it could best be described as a clear rubber double layer "choker" held together by a plastic stint. It fit tight around her neck and was held together with velcro. It held her head up straight, giving her neck no leeway what-so-ever and for an hour each day she looked like a really little member of one of those African tribes you see on National Geographic with all those rings around their necks. She hated every minute of it and I hated it even more. She would scream and try to wriggle away as I fit it around her, but if this was going to help my dauhgter be a "normal" little girl, then I would do whatever it took.
By nowI we'd been in PT for about 3 months and Camryn was seven months old. Mason was two and a half and needless to say I was a bit busy. When we first began therapy, Lori warned me that when a child has torticollis or any physical challenge for that matter, the rest of their development may be temporarily delayed while they work to correct the issue. But not to worry, it's perfectly normal and with time they will eventually catch up with their peers. Okay, makes sense. So is that why she's not babbling or rolling over? More than likely she had said. Don't worry she said,she's just fine.
So along with the stretching and the collar sessions, Camryn aslo seemed to be constantly battling a cold. Her nose was an endless stream of mucus and at night she would breathe heavy as if very congested. A trip to the pediatrician would always confirm that she did in deed have another cold and that it had turned into an ear infection AGAIN! Ear infections and Camryn got along famously, so much so , they were rarely without each other. She was on a constant antibiotic regimen which would clear things up for a month or so and then the nose would start running again. This poor child with her tilted head and plugged up ears.But kids get ear infections right? And what else would you expect when going to a hospital every week for therapy? Hospital is just a fancy word for a giant germ hotel. I really didn't think too much of it, though I did keep in the back of my head that Mason was never this sick as a baby and she also came to therapy with us yet managed to stay well. Hmmmmmm. Well, the Dr. doesn't seemed alarmed and he is a doctor, so who am I to second guess?
At about 9 months of age, Camryn was still as tilted as Pisa and miles behind other babies her age. I questioned Lori again, "Why isn't she pushing up on her hands or making any sounds?" Again, my worries were met with assurances that all was well and not to rush things, in two years she will be exactly where she needs to be. Okayyyyy, if you say so. I have to say I really liked Lori. As a young mom at home all day with my kids, I was desperate for adult interaction, so I actually looked forward to therapy days, knowing I would be talking real words to someone my height! It was pretty pathetic, but you know we have all been there. And while Lori was highly experienced and extremely knowledgeable in her field, her field was Physical Therapy, not pediatric medicine of any kind, so for me to expect her to interact with my child twice a week for 30 minutes and be able to pick up that she has a neurological disorder was asking a bit much. But you know, for the longest time after Camryn's diagnosis I blamed her for not taking my concerns more seriously. It was only in the past several years that I realized, this girl was not the reason my child went undiagnosed for so long. Just like every other medical professional, she was going by the numbers and when you run the numbers, if you have a child who needs therapy that is not meeting their milestones on schedule, nine times out of ten it's because of the issue needing therapy.How was she to know she had "one in ten" as a patient?
Now in the meantime, I was also voicing my concerns to our pediatrician, who was a family friend. He was more of a friend from the past of my brothers, so he was not around Camryn outside of the office. He only saw her in fifteen minute increments and knew of her what I told him. By looking at her, her could tell she had Torticollis and that she was delayed in her development. But just as Lori had told me, that was normal in this situation. He was such a sweet guy and early in his career. It was 2003-2004 at this time and as I mentioned before, Autism was not really a word you heard much. I was a lot more reserved back then, a people pleaser and anti boat rocker. I was so worried about Camryn, but was looking into the face of a man who had spent years and years at medical school learning way more than I could ever hope to so if he says Cam's is ok, then she must be ok. But you know that little knot in your stomach, the one that twists and turns when something doesn't feel right? Well, it had been twisting and turning in my belly for months, pushing me to keep going, keep asking. I was embarrassed to ask the doctor to send us to a specialist. Embarrassed! Can you believe that? I am actually embarrassed at my embarrassment now because that was my baby and I knew something was wrong and I was too scared of what someone else might think if I asked for further testing. I'm saying this though because I know that a lot of other parents have been in or may be in this situation and I want them to know it's 100 percent okay to question the doctor, always. I mustered up the courage to ask for a referral about her neck. We were sent to an orthopedic surgeon who ordered a CT scan. She was scanned, results were read and...fine. Nothing there. I was so glad to hear that her neck was structurally sound but frustrated at the thought of having to go back to the drawing board when it came to the cause of her delays. Back at the pediatricians, I sat red faced in the chair as I asked him to send us to someone else. Who did he suggest we see next to figure out if something was going on? We were sent to a genetic specialist who stripped Camryn down to her diaper, took a Polaroid of her and ordered bloodwork, bone scans and a urinalysis. The testing was intense and again THANK YOU ANNA for taking the day off work and holding my hand. Brads job did not allow for him to miss work,so Anna came with me. It was horrible. The bone density scan was basically an X-Ray of every bone in her body and in case you're wondering, not so pleasant. There were two technicians in the room standing around a big examining table, which was actually an X-Ray machine. Camryn was to lay down flat on this cold, metal surface and stay completely still while they take scan, after scan after scan. Now, Camryn laying flat didn't happen easily. She just didn't like to do it, so that was the first challenge. Then Camryn laying still. I don't think I even need to explain. And the techs? I'm sure they were lovely girls, but I did not appreciate their lack of empathy for my little girl crying and scared on the table.They seemed annoyed. Camryn has always been abnormally strong, so when she doesn't want to do something, look out. It took the three of us to hold her down while the other tech took the X-Ray. We would get her contorted just the right way and then she would move, so we'd have to do it again. And all the time we were wearing those lovely lead aprons, which made it feel like we were doing it all under water. Oh, it was absolutely horrid! It took about an hour of pure hell and finally the last bone was scanned.Thank God! Off to the next test, the EKG. This one was almost comical. Here is my daughter, not quite a year old, obviously delayed in all areas including communication, and the tech sits her on the exam table, tells her to take off her shirt and lay still while she attaches the monitors to her bare skin. Yeah right! I had to sit behind Camryn on the lovely butcher paper covered mat and pull each of her hands behind her back so she wouldn't try to grab the monitors off AND keep her still. Haaa! Of course she wasn't holding still. She was wriggling like a fish caught in a net, crying and screaming and the technician from Planet Oblivion was telling her "Stay still! I can't run this test if you don't stay still!" Anna and I are just looking at each other thinking "What in the hell is this woman smoking?" Did you not read the chart woman? This child is delayed. Meaning not on age level. Meaning she is not going to follow your directions, okay? It was a complete nightmare and in the end she called the doctor and had him come in and sign off on the best reading she could get. I was a sweaty, wrinkled mess and Camryn's body was covered in red splotches and soaked from tears and we still had two more tests to go! Next was bloodwork, which I just knew was going to be awful, but surprisingly, it was one of the better tests.Of course she did not like being pricked with a needle, but it was quick and the phlebotomist was much more congenial than her co-workers. Finally, the last test of the day, the one I hadn't even thought to dread, the urinalysis. I don't know why it never crossed my mind that they would need to collect urine from my daughter who was still in diapers and would not understand to pee on command leaving them no choice but to catherize her. I had never had a catheter at that time but since have and I am soooo sorry Camryn. I knew enough to know it would be uncomfortable because putting a clothespin on your urethra rarely ends in laughter and good times. But I had no idea it would be such an unpleasant test. That techinician was the sweetest girl, thank goodness and I made sure to tell her how much I appreciated her patience and understanding. We took off Camryn's diaper and she began to insert the catheter which as you can imagine, caused Camryn to kick and scream. She somehow managed to get it in place and then...we waited. We layed her on the exam bed and held her hands, played pat-a-cake and anything else we could do to keep her from taking off her diaper and ripping out the catheter. It took about a good 30 minutes before she "voided" as they say in medical lingo. Whew! Done! Completely mentally and physically drained, I got Camryn dressed, strapped in her stroller and Anna and I took the elevator down to the lobby. When the doors opened, that part of the hospital was actually closed! That's how long we had been there. And if I thought I was tired, my poor baby! She was beat! Her cheeks were red, her hair in sweaty strands, her eyes watery and bloodshot,this day had taken everything she had. I hugged Anna goodbye in the parking lot and thanked her for being such an amazing friend. As I loaded Cams into her carseat I looked at her innocent little face and thought "She has no idea why her mother just put her through hell". I got on the highway and headed home, not knowing anymore about Camryns delays then when I got there and knowing there was nothing more I could do now, but wait.
Wednesday, July 21, 2010
Sorry, but those shoes don't go with my outfit
I kind of got sidetracked with the Busch Gardens trip,but I really do want to go back in time to the beginning of this Autistic journey, so hopefully I will be able to stay on track this time. I left off with me working in the special needs Pre-K. After 3 years at this job, although I loved it, I needed to make more money so I went to work for the Healthy Families program as a Family Support Worker. My job was to be a support and resource for families who were expecting or had just had a baby. I would make weekly homevisists, at which time I would talk with the mom about her baby's development, bring out literature on infant care and get the families in contact with any local resource they may be in need of. I also took mothers to doctors appoinments, the WIC office, health department, etc. Basically, whatever these families needed as far as their pregnancy and children were concerned, they called me and I helped them. It was a great job, very rewarding, and I learned a lot! And at the time, it never really crossed my mind that although I had the social skills, the educational requirements and all the "training" necessary, I was in no way, shape or form qualified for that position. I was 22 years old, renting an apartment with one of my good friends, going out every weekend. My biggest worry at the time was that my hairdryer would burn out on Friday night. I had never been married, never been without food, or medical care or transportation and ummmm, oh yeah, never had a child! And here I was in all my early twenties cuteness, pulling up in these peoples driveways in my shiny Corolla, a canvas bag full of papers on how to breastfeed, the best way to discipline and what foods are best for your pregnant body slung over my shoulder! I can totally laugh at it now, but I also look back and really want to slap myself! And not just myself, but the numbskull who hired me! He was the nicest person with good intentions ( are you shocked that it was a man?) but hello?? A twentysomething, size 7, stretchmark free, blond haired, blue eyed, no cares in the world girl as a "counselor" for women who were either really, really pregnant or had just given birth, with floppy bellies and empty cupboards? If I was them and I showed up at my door I would cuss myself out! But back then, I never thought about it and thankfully none of the women ever showed any animoscity towards me. They sat patiently while I went over what they should be eating to provide the best nutrients for their unborn baby. They nodded their heads in agreement when I stressed over and over how important it was that they got their child immunized. They trusted my answers to their questions of was it normal to feel frustrated and helpless with a newborn who wouldn't stop crying. And they counted on me to give them accurate opinions on their childs development and if I thought they were meeting their milestones as they should. They believed that because I wore a badge and had a printer that I knew what they were going through, that I could relate to how they were feeling and that I had been in their shoes,when in fact, I wouldn't have been caught dead in them.
After I had Mason it really hit me that I should have never been sent to those womens homes. And after I had Camryn, it made me feel even worse because, my God, I had no clue what it was like to have a child, let alone a child who isn't growing as they should be, and certainly not while worrying about how I would pay my electric bill or who would take me to my babys checkup. And the irony of it all! I used to preach to women the importance of immunizations,follow that shot schedule! Then years later wonder if immunizations had made my baby different. How laughable it was that I would help set up behavior plans for these women to follow with their kids and then pull out my hair and lock myself in the bathroom while my own darlings temper tantrummed themselves into a coma outside the door.
I just find it so amazingly coincidental, so cruely ironic and so strangely amusing that my fate would turn out not much different than these womens, regardless of our economic or social differences. I knew what to do, where to go, what to eat, when to push, how to nurse, when to immunize, what to look for. I had a badge for God's sake! And yet, there I was, a new mother with a floppy belly and a screaming baby that wasn't meeting her milestones, feeling so helpless and frustatrated. My size 7 jeans pushed to the back of the closet and my shiny car replaced by a dull grey minivan, my worries so much greater than that.
I really felt for those women and I hoped so much that they knew although I didn't know what I was doing, I did care about them and their babies. And whether or not I could relate to their stories of all night screaming or ill behaved children, I really was listening. I hope I was able to bring them some sort of kinship at a time in their life when they felt so alone.
Turns out though, that my employment with Healthy Families was not a total staffing error. Because of my previous job in the Pre-k and largely because of what I learned in my time as a Family Support Worker, I was much more vigilant and knowledgeable when it came to my own childrens development. With Mason, there were no worries, but with Camryn the flags were a flyin' and I saw them because I was trained to. And when my fears were confirmed, I knew there were places to go, people who could help me, because I had pointed others in their direction years before. Life is so funny and so unpredictable and ever a learning experience. You just never know where it will take you, who it will make you or how it will change tomorrow.
And so my journey began. Now that I knew that yes, something wasn't as it should be, I needed to find out why. And "why" can be an elusive little bugger. I would start with my pediatrician, a trusted family friend in hopes that he could shine a little light on my daughters abnormal behaviors. But in 2003, Autism was merely a word at the beginning of the medical dictionary and the end of every doctors list of what could be wrong. The diagnosis would not come easy or quick. There would be appoinments and referrals and specialists and test after test after test. Are her eyes okay, is she hearing alright, does her brain have a tumor, are her chromosomes all in tact? These are the questions we had to answer before we could determine why she wasn't babbling at 6 months or why she arched her back when I tried to hold her close. The process was exhausting and heartbreaking and I don't know if I could have gotten through it without the amazing love and support of my best friend Anna (I love you girl!!!) She was, in fact, the first to notice that at four months old, her second born God- daughter wasn't holding her head up as she should. A busy young mom, trying to juggle a toddler and an infant, I noticed her neck strength wasn't going to win any awards, but I just chalked it up to her big, bobbly infant head and still being so young. Though I didn't know it, Anna was concerned and took her worries to a friend of hers who was an Occupational Therapist. The OT confirmed that Camryn should definitely be holding her head up and that she may have a condition called Torticollis, which could easily be corrected with Physical Therapy. Anna stopped by the next day and told me she wanted to tell me something. She then started to tear up, as she loves me girls as if they were her own and the thought that something could be wrong with Camryn upset her. She told me what she had learned and I was shocked! I looked at my baby and sure enough, her wobbly head was resting on her left shoulder,as it usually was. Thank God for Anna! I called the pediatrician, brought Cams in and walked out with a diagnosis of Torticollis and a script for PT. I was heartbroken that something was wrong with my child, but so thankful that it could be fixed. Little did I know, a tight sternocleidomastoid muscle was to be the least of my childs problems. I really just had no idea...
NOTE: I want to make it clear that I think the Healthy Families program is a wonderful resource for new parents. The program provides amazing support to families and is a blessing to those it serves. My only flaw with the program was that at the time I was hired it was not a requirement that you have a child to work there and it is my own personal opinion that anybody giving advice and support to a new mother should be a parent themselves, as it is virtually impossible to understand their feelings if you have never been in their shoes.
After I had Mason it really hit me that I should have never been sent to those womens homes. And after I had Camryn, it made me feel even worse because, my God, I had no clue what it was like to have a child, let alone a child who isn't growing as they should be, and certainly not while worrying about how I would pay my electric bill or who would take me to my babys checkup. And the irony of it all! I used to preach to women the importance of immunizations,follow that shot schedule! Then years later wonder if immunizations had made my baby different. How laughable it was that I would help set up behavior plans for these women to follow with their kids and then pull out my hair and lock myself in the bathroom while my own darlings temper tantrummed themselves into a coma outside the door.
I just find it so amazingly coincidental, so cruely ironic and so strangely amusing that my fate would turn out not much different than these womens, regardless of our economic or social differences. I knew what to do, where to go, what to eat, when to push, how to nurse, when to immunize, what to look for. I had a badge for God's sake! And yet, there I was, a new mother with a floppy belly and a screaming baby that wasn't meeting her milestones, feeling so helpless and frustatrated. My size 7 jeans pushed to the back of the closet and my shiny car replaced by a dull grey minivan, my worries so much greater than that.
I really felt for those women and I hoped so much that they knew although I didn't know what I was doing, I did care about them and their babies. And whether or not I could relate to their stories of all night screaming or ill behaved children, I really was listening. I hope I was able to bring them some sort of kinship at a time in their life when they felt so alone.
Turns out though, that my employment with Healthy Families was not a total staffing error. Because of my previous job in the Pre-k and largely because of what I learned in my time as a Family Support Worker, I was much more vigilant and knowledgeable when it came to my own childrens development. With Mason, there were no worries, but with Camryn the flags were a flyin' and I saw them because I was trained to. And when my fears were confirmed, I knew there were places to go, people who could help me, because I had pointed others in their direction years before. Life is so funny and so unpredictable and ever a learning experience. You just never know where it will take you, who it will make you or how it will change tomorrow.
And so my journey began. Now that I knew that yes, something wasn't as it should be, I needed to find out why. And "why" can be an elusive little bugger. I would start with my pediatrician, a trusted family friend in hopes that he could shine a little light on my daughters abnormal behaviors. But in 2003, Autism was merely a word at the beginning of the medical dictionary and the end of every doctors list of what could be wrong. The diagnosis would not come easy or quick. There would be appoinments and referrals and specialists and test after test after test. Are her eyes okay, is she hearing alright, does her brain have a tumor, are her chromosomes all in tact? These are the questions we had to answer before we could determine why she wasn't babbling at 6 months or why she arched her back when I tried to hold her close. The process was exhausting and heartbreaking and I don't know if I could have gotten through it without the amazing love and support of my best friend Anna (I love you girl!!!) She was, in fact, the first to notice that at four months old, her second born God- daughter wasn't holding her head up as she should. A busy young mom, trying to juggle a toddler and an infant, I noticed her neck strength wasn't going to win any awards, but I just chalked it up to her big, bobbly infant head and still being so young. Though I didn't know it, Anna was concerned and took her worries to a friend of hers who was an Occupational Therapist. The OT confirmed that Camryn should definitely be holding her head up and that she may have a condition called Torticollis, which could easily be corrected with Physical Therapy. Anna stopped by the next day and told me she wanted to tell me something. She then started to tear up, as she loves me girls as if they were her own and the thought that something could be wrong with Camryn upset her. She told me what she had learned and I was shocked! I looked at my baby and sure enough, her wobbly head was resting on her left shoulder,as it usually was. Thank God for Anna! I called the pediatrician, brought Cams in and walked out with a diagnosis of Torticollis and a script for PT. I was heartbroken that something was wrong with my child, but so thankful that it could be fixed. Little did I know, a tight sternocleidomastoid muscle was to be the least of my childs problems. I really just had no idea...
NOTE: I want to make it clear that I think the Healthy Families program is a wonderful resource for new parents. The program provides amazing support to families and is a blessing to those it serves. My only flaw with the program was that at the time I was hired it was not a requirement that you have a child to work there and it is my own personal opinion that anybody giving advice and support to a new mother should be a parent themselves, as it is virtually impossible to understand their feelings if you have never been in their shoes.
Monday, July 19, 2010
We Did It!
Yesterday we did something I have been waiting 7 years to do.We took Camryn to an amusement park, Busch Gardens to be exact, and we lived to tell about it! She did great and had so much fun and I actually am thinking of going back! The original reason for going was for Natalie, who also had never been to a theme park. Her birthday is this Tuesday so instead of having a kid party at home, I used every trick up my sleeve to convince her that going to Busch Gardens would be SOOOOOO much better than some boring party at home. Really, it was just me being sneaky and not wanting to have the house we just got all moved into and put together detroyed in a matter of minutes by a preschool birthday brigade. But I also knew that she would absolutlely love it and we already have annual passes, plus she gets in free because she is under 5, so if it would work in my favor too, well that was just a nice, big bonus.
So, like I was saying, this trip was really about Nat and her birthday. But, Camryn going to something like this was a pretty big deal as well! The only place that would even come close to a theme park that she has been would be the "permanent carnival" type place in Port Charlotte and really, that doesn't even begin to compare, so this was really uncharted territory. All of my family was going as well, so I knew we'd have backup, which is always helpful in these situations. I also knew that Busch Gardens has a special pass for special needs guests that allows them to go to the front of the line, which for those of you saying "That's not fair" I say to you, "Fine, "I'll wait in line with you, in fact I'll wait in line directly behind you. Hope you don't mind ear piercing screams and getting kicked in your shins!" And, from the very bottom of our bag of tricks, the totally overpriced, hard plastic, way too small but it will work rental stroller, a must for Miss Cams.
Sunscreen check! Medication, check! Bright yellow camp t-shirt that has the word Autism printed on it for those who wonder why that little girl is biting her hands in excitement or having a huge meltdown in the middle of the walkway, check! And we were off!
We got parked and to the tram, which could have been the only thing we rode all day and Cams would have been over the moon. She sat close to Brad and when we took off at the heart racing 10 mph, she scrunched her face up in sheer delight and squealed at the top of her lungs! "Wanna ride the roller coaster!" she yelled out. We hadn't even made it to the entrance of the park and she was already having a blast. We checked in, got her special pass, got the stroller and headed off to the Sesame Street Safari area, which if you haven't been there, is an awesome place for little ones. On the way we passed a kiddie airplane ride, you know the kind where you sit in behind a bar and the planes are on a metal "arm" that goes up and down as it circles around. Well, of course Nat and Mace wanted to go on, and I knew Cams would flip over it, but when I got closer, I saw that all that was keeping the kids in the seat was a regular seat belt. Have I mentioned that we have a special seat belt guard in our car because one of Cams favorite pasttimes is unbuckling her seatbelt and crawling all over the car, pinching everyone in her path, usually when I'm on some super busy highway? Well, yeah, so there was no way I was putting her on an elevated ride with only a seatbelt between her and her first skydiving experience. So Mason and Nat rode and Cam sat in the stroller and watched. :(
As we made our way to Sesame Street, we passed the aviary, where you can purchase nectar (which apparently is made from melted gold, as it costs five dollars for 2 tablespoons worth) and the birds will land on you and eat out of your cup. Hmmmmm, I don't know about this. Free flying birds, within Camryns eager reach? Is there a waiver I can sign protecting me from charges if Cams were get one of these things by the neck? We decided to go for it. There were so many feathered friends flying noone would notice if one went missing. Mason and Natalie ran off with their nectar, laughing and having the time of their life. Cams stayed with me, her hand in mine, looking at the birds and saying "Muwah!(Making kissing sounds) I like their eyebrows. I like their hair. He wants a licky face." That's Cam language for " I really like you and I want to sit in front of you with my mouth open while you lick my face." She was surprisingly calm, enough in fact that I was able to let her hold the cup of nectar while a small parrot drank from it, which delighted her to no end. We said goodbye to the birds and headed off to Sesame Street and I just have to tell you that we couldn't find it, so without even realizing what I was saying I asked a park attendant " Can you tell me how to get to Sesame Street?" As soon as I said it I thought I would pee my pants in laughter. But anyway, we got there and sat down for a "live" show with Elmo, Cookie Monster and the whole gang. I had my doubts about how Camryn would do with the whole show thing. She will not sit for a 30 minute show on T.V., but maybe because the characters are right in front of her here she would. Plus, the fact that is was about 200 degrees and we were all in a heat coma would probably work in our favor. And it did. Camryn sat on Brads lap and clapped to the music, waved to the characters and was fully engaged for the entire show! Mason and Natalie were lovin' it too. Natalie even got a pat on the head from Abby Cadabby! Woo-hoo!
With that out of the way, I wanted to take Cams to Jungala to see the tigers, the white ones in particular. By now, you should all know her obsession with white tigers and her famous side kick stuffie, appropriately named "White Tiger". I was sure she would flip out in the observation tube where you are literally face to face with the tigers. And she did, but not how I was imagining it. She loved looking at them through the big glass windows. " Muwah!Muwah! I wanna give him a hug. He wants a kiss. I like his eyebrows." (She has to stop saying this to everyone or people will think she's not being sincere) ;) She was so into it and I was so enjoying watching her. It's these times that I look at her and see her pure and total fearlessness and innocence, because the truth of the matter is, if that big glass wall wasn't there, she would be down there, right in that gi-normous tigers face, kissing his nose,giving him "licky face" and complimenting his brows, with no worries of being mauled. She didn't see the sharpness of his fangs or the length of his claws, She only saw his beauty and softness and grandeur(sp?). I love that about her! Seeing how excited she was at this viewing area, I couldn't wait to get her to the glass "periscope" so she could climp up and see her beloved eye to eye. But when we got to the stairs to climp up into the VERY small enclosure, she freaked. I knew she didn't like stairs, she won't climb them at all at the playground,but I didn't even think about it being an issue in this setting. I pulled her up there, but she was so wrapped up in not liking the whole stairs and closed in thing, that she never even noticed the tiger napping less than five feet away. Oh well.
By this time it was so unbearably hot that most of the group wanted to do the River Rapids and cool down. Nat couldn't go, too small, so I stayed with her and everyone else went on, including Cams. I wished I could have seen her on it. She loved it, as I knew she would!
I wanted to see more animals, but we got there at 4:00 and we didn't have much time left. Mason really wanted to ride the Cheetah Chase rollercoaster, so we hurried over to the Midway area. Camryn was chanting" Wanna ride the Cheetah Chase with Daddy! Wanna ride the Cheetah Chase with Daddy!" What was so funny is she had no idea what the Cheeta Chase was. She had heard Mason say that throughout the day, so she was repeating it. However, she loves to go fast, so we figured we'd give her a thrill and let her ride. I have such mixed feelings when it comes to things like this. I want her to go and experience the same things her sisters do, but with her sisters I can say"Okay, you can ride but you know it goes super fast right? And you know it will be kind of scary right? And you know once you get on there is no getting off right? You still want to go? Okay" But with Cams I can explain all I want and she's not going to comprehend like her sisters and I still let her go but feel guilty and scared for her as she sits in the coaster car, grimacing and twitching, no idea that she will be speeding over hills and whipping around corners in just a minute. But she rode and she loved, although the picture on the screen at the counter showed her with a look of nothing less than pure terror on her little face. I totally bought that picture! She got off galloping and laughing, apparently unfazed by the wild ride she had just been on. The day had gone so smoothly up until this point. So smoothly in fact that I was scared. You know how right before a big summer storm the air goes totally still? The sky gets that yellowish tint and all is quiet? Well, I got that feeling, a feeling that there was a storm a'brewin' and I was so right. We were leaving Cheetah Chase, Cams was in the stroller and then she saw it. The carousel, in all it's twinkle light Carnival splendor, spinning around right before us. She was out of that stroller and making her way through the crowd within seconds. Arms flailing, face grimacing, she was on a mission to get on that carousel. It's already in motion? Not an issue for Cams, which is why I was racing after her, stretching out my arms trying to snag her shirt. I grabbed her before she made it past the turnstyle, but not without much resistance and screaming, Oh the screaming! People were staring and the Autism shirt was by now a moot point, as it was dark and no one could see printed out in little black letters that this was a child on the spectrum. No, all they saw was a four foot, sixty pound child biting her hands and arching her back wailing at the top of her lungs. And her pathetic mother standing there, unable to restrain her unruly child. I looked around at the crowd, sure to make eye contact with everyone to let them know I didn't care what they thought and that whether or not it looked like it, I did have my child under control. We finally made it onto the carousel and Camryn clammored up the tallest horse there, of course. I gave her a shove to help her make it to the top and once she swung her leg over, I reached for the seatbelt to hold her in. Only, on this carousel, there was no seatbelt! THERE WAS NO SEATBELT!!! Oh my lord, are these people kidding me? My autistic daughter is straddling a slippery plastic horse that will go up and down while spinning in circle not to mention she was in the outside row and there is no seatbelt! And I had about 30 seconds to process this because I no sooner had discovered the lack of restraint than I heard the familiar Brrrrring!" and the carousel started to turn. Oh this is just great! I wrapped my arm around Camryns waist hoping that would help to hold her in. It was at this time that a friend of ours who had come with us that day and was watching from the sidelines and apparently had no idea that I was hanging onto Camryn for dear life decided to start waving at her. OMG! So, Camryn, who was only holding on with one hand anyway at this poing and biting the other, lets go and starts waving back.Not only waving back, but arching her back in excitement, causing her to slide around on the seat. It's at times like these that I always wonder why is my life not being filmed? My friends and I always say "Where are the cameras?" when situations like this arise. So you can imagine what was going on in my head "Where are the cameras? Where ARE the cameras?" Camryn was now not only waving to our friend, but everyone else as well, so she was not hanging on at all, which meant the only thing keeping her on the slippery pony was my poor stretched out arm. When was this ride going to end? Well, shortly thereafter it did and that presented another problem. Cams is like a toddler and like all toddlers, she wanted to ride again, but we had to leave. And like most toddlers,she threw a fit that she didn't get to ride. However, most toddlers do not weigh over sixty pounds, so her fits are a bit more invloved. So there I was dragging her kicking and screaming off this God forsaken carousel praying I'd make it to the stroller without yanking my arm from it's socket. My brother was watching from the sidelines and although he has no kids, it was so bad even he could tell there was only one thing to do....cotton candy run! He rushed off and came back with a huge bush of the stuff, pink and sticky and just the thing to get Cams mind off the carousel. Uncle Tommy we owe ya one!! By this time, it was 9:00, the park was closing and it was raining. With every raindrop the cotton candy got stiffer and stickier, but it had Cams attention so I didn't care, I'd chisel it off her later. By the time we got to the tram, her shirt was plastered with the stuff, hard patches of pink fuzz all over her body. We boarded the tram, which again, brought total elation to her. We piled into the Suburban and breathed a sigh of relief. We did it. We came, we saw, we conquered and we are all still in one piece! For any family, an amusement park is a huge undertaking. The planning, the waiting in lines, the heat,the whining, the tantrums. It can be exhausting. But for our family, it's not only a huge ordeal, it's a huge achievement. It's just one more thing we weren't sure we could do, but we did it anyway and we made it! And I'm already planning on going back this week, but this time with only Mason and Nat while Cams is at camp. While we had fun and saw some neat stuff, the focus was mostly on Cams and what would be best to do with her. My other two girls had a great time, but we skipped several attractions that they would have loved because it wasn't suited for Camryn. So Cams got to go, she had a great time and now I will go back with Mason and Natalie. There will be no waiting for special passes, no fear of birds getting strangled, no nervously awaiting the yellow sky.And it will be nice to experience it that way. And when we walk by the tigers den and all the kids are pressed up against the glass in awe of the fierceful creature I bet I won't hear a single child saying"Muwah, I wanna give him a kiss!" They won't see his fabulous eyebrows or want to rub up aginst his "licky face" and I will smile at how lucky I am to be the mother of the little girl who does :)
So, like I was saying, this trip was really about Nat and her birthday. But, Camryn going to something like this was a pretty big deal as well! The only place that would even come close to a theme park that she has been would be the "permanent carnival" type place in Port Charlotte and really, that doesn't even begin to compare, so this was really uncharted territory. All of my family was going as well, so I knew we'd have backup, which is always helpful in these situations. I also knew that Busch Gardens has a special pass for special needs guests that allows them to go to the front of the line, which for those of you saying "That's not fair" I say to you, "Fine, "I'll wait in line with you, in fact I'll wait in line directly behind you. Hope you don't mind ear piercing screams and getting kicked in your shins!" And, from the very bottom of our bag of tricks, the totally overpriced, hard plastic, way too small but it will work rental stroller, a must for Miss Cams.
Sunscreen check! Medication, check! Bright yellow camp t-shirt that has the word Autism printed on it for those who wonder why that little girl is biting her hands in excitement or having a huge meltdown in the middle of the walkway, check! And we were off!
We got parked and to the tram, which could have been the only thing we rode all day and Cams would have been over the moon. She sat close to Brad and when we took off at the heart racing 10 mph, she scrunched her face up in sheer delight and squealed at the top of her lungs! "Wanna ride the roller coaster!" she yelled out. We hadn't even made it to the entrance of the park and she was already having a blast. We checked in, got her special pass, got the stroller and headed off to the Sesame Street Safari area, which if you haven't been there, is an awesome place for little ones. On the way we passed a kiddie airplane ride, you know the kind where you sit in behind a bar and the planes are on a metal "arm" that goes up and down as it circles around. Well, of course Nat and Mace wanted to go on, and I knew Cams would flip over it, but when I got closer, I saw that all that was keeping the kids in the seat was a regular seat belt. Have I mentioned that we have a special seat belt guard in our car because one of Cams favorite pasttimes is unbuckling her seatbelt and crawling all over the car, pinching everyone in her path, usually when I'm on some super busy highway? Well, yeah, so there was no way I was putting her on an elevated ride with only a seatbelt between her and her first skydiving experience. So Mason and Nat rode and Cam sat in the stroller and watched. :(
As we made our way to Sesame Street, we passed the aviary, where you can purchase nectar (which apparently is made from melted gold, as it costs five dollars for 2 tablespoons worth) and the birds will land on you and eat out of your cup. Hmmmmm, I don't know about this. Free flying birds, within Camryns eager reach? Is there a waiver I can sign protecting me from charges if Cams were get one of these things by the neck? We decided to go for it. There were so many feathered friends flying noone would notice if one went missing. Mason and Natalie ran off with their nectar, laughing and having the time of their life. Cams stayed with me, her hand in mine, looking at the birds and saying "Muwah!(Making kissing sounds) I like their eyebrows. I like their hair. He wants a licky face." That's Cam language for " I really like you and I want to sit in front of you with my mouth open while you lick my face." She was surprisingly calm, enough in fact that I was able to let her hold the cup of nectar while a small parrot drank from it, which delighted her to no end. We said goodbye to the birds and headed off to Sesame Street and I just have to tell you that we couldn't find it, so without even realizing what I was saying I asked a park attendant " Can you tell me how to get to Sesame Street?" As soon as I said it I thought I would pee my pants in laughter. But anyway, we got there and sat down for a "live" show with Elmo, Cookie Monster and the whole gang. I had my doubts about how Camryn would do with the whole show thing. She will not sit for a 30 minute show on T.V., but maybe because the characters are right in front of her here she would. Plus, the fact that is was about 200 degrees and we were all in a heat coma would probably work in our favor. And it did. Camryn sat on Brads lap and clapped to the music, waved to the characters and was fully engaged for the entire show! Mason and Natalie were lovin' it too. Natalie even got a pat on the head from Abby Cadabby! Woo-hoo!
With that out of the way, I wanted to take Cams to Jungala to see the tigers, the white ones in particular. By now, you should all know her obsession with white tigers and her famous side kick stuffie, appropriately named "White Tiger". I was sure she would flip out in the observation tube where you are literally face to face with the tigers. And she did, but not how I was imagining it. She loved looking at them through the big glass windows. " Muwah!Muwah! I wanna give him a hug. He wants a kiss. I like his eyebrows." (She has to stop saying this to everyone or people will think she's not being sincere) ;) She was so into it and I was so enjoying watching her. It's these times that I look at her and see her pure and total fearlessness and innocence, because the truth of the matter is, if that big glass wall wasn't there, she would be down there, right in that gi-normous tigers face, kissing his nose,giving him "licky face" and complimenting his brows, with no worries of being mauled. She didn't see the sharpness of his fangs or the length of his claws, She only saw his beauty and softness and grandeur(sp?). I love that about her! Seeing how excited she was at this viewing area, I couldn't wait to get her to the glass "periscope" so she could climp up and see her beloved eye to eye. But when we got to the stairs to climp up into the VERY small enclosure, she freaked. I knew she didn't like stairs, she won't climb them at all at the playground,but I didn't even think about it being an issue in this setting. I pulled her up there, but she was so wrapped up in not liking the whole stairs and closed in thing, that she never even noticed the tiger napping less than five feet away. Oh well.
By this time it was so unbearably hot that most of the group wanted to do the River Rapids and cool down. Nat couldn't go, too small, so I stayed with her and everyone else went on, including Cams. I wished I could have seen her on it. She loved it, as I knew she would!
I wanted to see more animals, but we got there at 4:00 and we didn't have much time left. Mason really wanted to ride the Cheetah Chase rollercoaster, so we hurried over to the Midway area. Camryn was chanting" Wanna ride the Cheetah Chase with Daddy! Wanna ride the Cheetah Chase with Daddy!" What was so funny is she had no idea what the Cheeta Chase was. She had heard Mason say that throughout the day, so she was repeating it. However, she loves to go fast, so we figured we'd give her a thrill and let her ride. I have such mixed feelings when it comes to things like this. I want her to go and experience the same things her sisters do, but with her sisters I can say"Okay, you can ride but you know it goes super fast right? And you know it will be kind of scary right? And you know once you get on there is no getting off right? You still want to go? Okay" But with Cams I can explain all I want and she's not going to comprehend like her sisters and I still let her go but feel guilty and scared for her as she sits in the coaster car, grimacing and twitching, no idea that she will be speeding over hills and whipping around corners in just a minute. But she rode and she loved, although the picture on the screen at the counter showed her with a look of nothing less than pure terror on her little face. I totally bought that picture! She got off galloping and laughing, apparently unfazed by the wild ride she had just been on. The day had gone so smoothly up until this point. So smoothly in fact that I was scared. You know how right before a big summer storm the air goes totally still? The sky gets that yellowish tint and all is quiet? Well, I got that feeling, a feeling that there was a storm a'brewin' and I was so right. We were leaving Cheetah Chase, Cams was in the stroller and then she saw it. The carousel, in all it's twinkle light Carnival splendor, spinning around right before us. She was out of that stroller and making her way through the crowd within seconds. Arms flailing, face grimacing, she was on a mission to get on that carousel. It's already in motion? Not an issue for Cams, which is why I was racing after her, stretching out my arms trying to snag her shirt. I grabbed her before she made it past the turnstyle, but not without much resistance and screaming, Oh the screaming! People were staring and the Autism shirt was by now a moot point, as it was dark and no one could see printed out in little black letters that this was a child on the spectrum. No, all they saw was a four foot, sixty pound child biting her hands and arching her back wailing at the top of her lungs. And her pathetic mother standing there, unable to restrain her unruly child. I looked around at the crowd, sure to make eye contact with everyone to let them know I didn't care what they thought and that whether or not it looked like it, I did have my child under control. We finally made it onto the carousel and Camryn clammored up the tallest horse there, of course. I gave her a shove to help her make it to the top and once she swung her leg over, I reached for the seatbelt to hold her in. Only, on this carousel, there was no seatbelt! THERE WAS NO SEATBELT!!! Oh my lord, are these people kidding me? My autistic daughter is straddling a slippery plastic horse that will go up and down while spinning in circle not to mention she was in the outside row and there is no seatbelt! And I had about 30 seconds to process this because I no sooner had discovered the lack of restraint than I heard the familiar Brrrrring!" and the carousel started to turn. Oh this is just great! I wrapped my arm around Camryns waist hoping that would help to hold her in. It was at this time that a friend of ours who had come with us that day and was watching from the sidelines and apparently had no idea that I was hanging onto Camryn for dear life decided to start waving at her. OMG! So, Camryn, who was only holding on with one hand anyway at this poing and biting the other, lets go and starts waving back.Not only waving back, but arching her back in excitement, causing her to slide around on the seat. It's at times like these that I always wonder why is my life not being filmed? My friends and I always say "Where are the cameras?" when situations like this arise. So you can imagine what was going on in my head "Where are the cameras? Where ARE the cameras?" Camryn was now not only waving to our friend, but everyone else as well, so she was not hanging on at all, which meant the only thing keeping her on the slippery pony was my poor stretched out arm. When was this ride going to end? Well, shortly thereafter it did and that presented another problem. Cams is like a toddler and like all toddlers, she wanted to ride again, but we had to leave. And like most toddlers,she threw a fit that she didn't get to ride. However, most toddlers do not weigh over sixty pounds, so her fits are a bit more invloved. So there I was dragging her kicking and screaming off this God forsaken carousel praying I'd make it to the stroller without yanking my arm from it's socket. My brother was watching from the sidelines and although he has no kids, it was so bad even he could tell there was only one thing to do....cotton candy run! He rushed off and came back with a huge bush of the stuff, pink and sticky and just the thing to get Cams mind off the carousel. Uncle Tommy we owe ya one!! By this time, it was 9:00, the park was closing and it was raining. With every raindrop the cotton candy got stiffer and stickier, but it had Cams attention so I didn't care, I'd chisel it off her later. By the time we got to the tram, her shirt was plastered with the stuff, hard patches of pink fuzz all over her body. We boarded the tram, which again, brought total elation to her. We piled into the Suburban and breathed a sigh of relief. We did it. We came, we saw, we conquered and we are all still in one piece! For any family, an amusement park is a huge undertaking. The planning, the waiting in lines, the heat,the whining, the tantrums. It can be exhausting. But for our family, it's not only a huge ordeal, it's a huge achievement. It's just one more thing we weren't sure we could do, but we did it anyway and we made it! And I'm already planning on going back this week, but this time with only Mason and Nat while Cams is at camp. While we had fun and saw some neat stuff, the focus was mostly on Cams and what would be best to do with her. My other two girls had a great time, but we skipped several attractions that they would have loved because it wasn't suited for Camryn. So Cams got to go, she had a great time and now I will go back with Mason and Natalie. There will be no waiting for special passes, no fear of birds getting strangled, no nervously awaiting the yellow sky.And it will be nice to experience it that way. And when we walk by the tigers den and all the kids are pressed up against the glass in awe of the fierceful creature I bet I won't hear a single child saying"Muwah, I wanna give him a kiss!" They won't see his fabulous eyebrows or want to rub up aginst his "licky face" and I will smile at how lucky I am to be the mother of the little girl who does :)
Friday, July 16, 2010
"Emma"
So I intended to write just one post about my job in the VE classroom and then move on, but there is one more story I feel compelled to tell that haunts me in these days particularly. And if I ramble or get off track along the way, forgive me. I never know where these things will go.
Her name was Emma (not really, but because this story is of such a personal topic, I am changing her name). She was in the V.E. class the first year I started. At four years old, she was a wisp of a thing. Her hair was dark brown and full of stubborn cow-licks, often a tangled mess, for which I blamed her mother. She was light skinned, but of spanish descent, so her eyes were a deep brown and doe like. I can't quite remember the first time I saw her or what I thought of her in those early days. She didn't have a "label" which if you know anything about special ed, then you know all about labels. No, just "Developmentally Delayed" with no reason as to why. But remember, this was 1994. She had an older sister in the second grade who was a typical child and a high school age step brother, with some special needs of his own, but he didn't live at home. She was always visibly clean, but disheveled at best, her clothes wrinkled and dingy and never particularly "little girly" looking at all. Again, I blamed her mother for not dressing her cuter or taking more time with her in the morning, because you know, I was 18 and I knew all about parenting! Ha!! But amidst all her clumsiness and lackluster, she was a beautiful child. Her mother was not very put together either. Three out of five days Emma would arrive late to school. While the other kids sat at circle time singing good morning songs, the door would creak open slowly and Emma, her sister and her mother would tiptoe in, a look of pure exhaustion on her mothers face. Her blouses were often tucked only half way in to wrinkled slacks that needed a good hem job. She had an office job, so she needed to look presentable, but most of the days she just looked awake. She would often talk about Emma and how she worried so about her future and where she would end up. She didn't know what would become of her daughter and feared about the coming years. Emma's sister would just stand there, trying to smooth out her sister's matted hair as her mother talked with the teacher. She seemed so, I don't want to say negative, but negative. I never took a liking to her and though I knew she loved Emma, it seemed so forced.
At that time, I was an "enhanced assistant"which basically means I was "technically" hired for one particular child, but in reality I helped with them all. The little girl I worked with used a walker and was dealyed in her speech and development and as I think about it right now, looked ALOT like Camryn. I can't go into her story right now, as I get off track easily and want to focus on Emma, but I will say that little girl was an innocent child born into a really crappy family. And that's all I will say for now.
So, because I was busy with my assigned student most of the day, I really didn't get to spend a lot of one on one time with Emma. From what I had heard and observed she didn't talk much and when she did it was her own language. Her eyes, for all their deep brown, were eerily vacant at times and she seemed as if she lived in a world of her own. She had trouble staying on her cot at nap time and would "talk" to herself throughout the day. My student started missing more and more school, which meant I was free to help with the other kids more. Again, they all had a story and stole my heart, but I have to stay focused. This was before Dylan was in the class and at this time, if a student had a hard time resting at nap time, an assistant could walk them around the school while the others slept. I volunteered to walk with Emma, as I found her fascinating. I would take her tiny hand in mine and we would walk the halls. The school was an open campus, so we weren't confined to the inside. I would walk her through the schools butterfly garden and always name each bug and flower. I knew we weren't going to have a conversation about it or anything, but she was a child and she needed to be talked to, regardless of whether she talked back. We would take the winding path to the library, turn around and pass the huge live oak. One day in the fall, when the acorns were on the ground, Emma bent down and picked one up. "Acorn" I said,"Baby tree". She pinced it between her thumb and pointer finger and brought it so close to her eyes they nearly crossed. She would examine it and roll it back and forth in her hand, but not a word, or at least not a word I could understand. And then we would keep walking. We did this for the next couple of months, as my student got very ill and was out for long periods of time. And every day, Emma would pluck an acorn off the ground and I would say "Acorn.Baby tree." I tear up at this because I have these very converstaions with Camryn. Then one day, when Emma was particularly antsy at nap, I volunteered to walk with her. We followed the same path we usually did and as we came to the oak tree, Emma picked up her acorn. I can't remember why, but I was looking the other way, not paying attention to what she was doing and then I heard it. The softest, tiniest but clear as a bell voice said "Baby." I was flabbergasted! She said baby! She said it! All these days I was saying it to her just because,hoping she'd get it but figuring probably not, but she did! "Yes Emma, yes! Baby!" I was so ecstatic that I grabbed her by the hand and raced back to the room to tell the other teachers. I was so happy and so proud and completely inspired.
A month later, on a lazy Sunday morning, I sat at the dining room table to read the newspaper sprawled out in front of me. Fifty percent chance of rain...sale at Macy's... Child 5, Drowns in Backyard Pool. I screamed "Oh my God!" and I cried for so long after.
They said it was an accident. They said her stepdad was out, her mother in the garage doing laundry and her sister and her were "playing" inside. They said she was nude, except for a pair of cowboy boots, which probably filled up with water as soon as she fell in. And they said her mother screamed when she found her and although the neighbors tried to bring her back, it was too late, she was gone.
Her birthday had been the Friday before and her mother was to bring in cupcakes, but she forgot. She said she would bring them in Monday, but there would be no need. I was not a mother then, not even an adult, but I remember thinking that something just didn't seem right. These days if you asked me if I would ever, EVER leave Camryn unattended around a pool of water, the answer would be "No way in hell!" She is drawn to water and has no fear of the dangers it can bring. And although I had no idea what Autism really was back then or that Emma was in fact Autistic, I knew that no child should be left alone around a pool, and certainly not a child like Emma. Yet, she was and she drowned. Why?
I could never shake the feeling that maybe this wasn't an accident. I'm not suggesting it was on purpose either. More like a mother who was tired, scared and alone. A mother who loved her child, but didn't know how to raise her and had no hope for her daughter's future. A mother who maybe, just maybe, had given up, checked out, gone numb. And for all the anger I had for her, all the hateful thoughts I had about her, now that I am the mother of a child whose future is as uncertain as Emma's, I feel so sorry for her mother. Because as ugly as this may sound, I have been in that womans wrinkled shirt and scuffed up heels. Feeling so defeated that fighting was no longer an option. Feeling so certain it would all be in vain, so why bother. Now I am not at all suggesting that I thought about harming my child. That would NEVER EVER happen. I am saying that there have been times on this Autistic journey that I have felt like giving up, feeling sorry for myself and just not trying so hard, or at all for that matter. I would be lying if I said I had never fantasized about a life without screaming and public meltdowns and injuries to other kids and off limits outings and vacations. Yes, I have daydreamed about it all. How nice it would be to pack the kids up for the weekend, take them to Disney and let them play along others as we watched from the side. How amazing to go to Target and checkout without Camryn biting herself and screaming in frustration because the cashier is scanning the dog bones. And how truly luxurious to sit out in the fenced backyard with all my kids, let them eat popsicles and play in the sprinkler with no fear of Cams pinching her little sister so hard she bleeds or pulling Masons hard so hard she falls to the ground. And though I knew nothing of Emmas homelife or her idiosynchrosies (sp?) I know the heartache her mother felt when the doctors told her Emma wasn't"normal" and I know the sadness her mother felt when she looked at her older daughter and knew that she would always be responsible for Emma when she and her husband were gone and if her sister didn't take care of her, who would? Who would love her like her mother did? And I know the exhaustion at the end of the day and the mornings you literally drag yourself out of bed, fearful of what the day might bring. And I also know the love she had for Emma. That undeniable, inborn protectiveness all mothers have for their young. The hopes that the best the world has to offer would be within her reach.
I think about Emma often. I go over that story in my head. And I see it all so differently than I did back then. Emma was Autistic. I'm sure of it now. But sixteen years ago, that word was not well known in society. There was no Autism Speaks, no puzzle piece bumper stickers. There wasn't half the information and interventions available today, not to mention the prevalance in the population. And even with all the resources out there now, I still feel so overwhelmed and helpless at times, so I really can only imagine how her mother must have felt. I wonder how she is today. I wonder if she is at peace with Emma's death and how her life has turned out. I wonder if she was ever able to look past the heartache and frustrations and find the beauty and good in the little girl who was different than most. I wonder if she ever, just once, considered herself blessed to have the experience of raising such a child. I wonder if it ever crossed her mind that things might get better, that it wouldn't always be so hard. I wonder if she knows I still think about her daughter and that now it's more personal than ever. I feel for Emma's mother and wonder how many other's were/are just like her. I am so blessed to have such support from family and friends. To be able to talk with others and get a break and have access to good schools and therapies. And although it is too late for Emma's mom, I hope that no one ever feels that they have to go through this quietly and alone. It's okay to talk about it, in fact, I find it necessary. It's okay to say it's hard and it's sad and it's scary and that yeah, at some times it really, really sucks! I think you can make yourself crazy trying to pretend that everythings okay, you've got it all together, you can handle this. It's okay to admit defeat, as long as you pull yourself up determined to win the next round. Raising Autism can be a real challenge with more downs than ups sometimes, but if you just go with it, really go with it, really experience it, really feel it, I think you will find it will be the most rewarding thing you will ever do in this life!
Her name was Emma (not really, but because this story is of such a personal topic, I am changing her name). She was in the V.E. class the first year I started. At four years old, she was a wisp of a thing. Her hair was dark brown and full of stubborn cow-licks, often a tangled mess, for which I blamed her mother. She was light skinned, but of spanish descent, so her eyes were a deep brown and doe like. I can't quite remember the first time I saw her or what I thought of her in those early days. She didn't have a "label" which if you know anything about special ed, then you know all about labels. No, just "Developmentally Delayed" with no reason as to why. But remember, this was 1994. She had an older sister in the second grade who was a typical child and a high school age step brother, with some special needs of his own, but he didn't live at home. She was always visibly clean, but disheveled at best, her clothes wrinkled and dingy and never particularly "little girly" looking at all. Again, I blamed her mother for not dressing her cuter or taking more time with her in the morning, because you know, I was 18 and I knew all about parenting! Ha!! But amidst all her clumsiness and lackluster, she was a beautiful child. Her mother was not very put together either. Three out of five days Emma would arrive late to school. While the other kids sat at circle time singing good morning songs, the door would creak open slowly and Emma, her sister and her mother would tiptoe in, a look of pure exhaustion on her mothers face. Her blouses were often tucked only half way in to wrinkled slacks that needed a good hem job. She had an office job, so she needed to look presentable, but most of the days she just looked awake. She would often talk about Emma and how she worried so about her future and where she would end up. She didn't know what would become of her daughter and feared about the coming years. Emma's sister would just stand there, trying to smooth out her sister's matted hair as her mother talked with the teacher. She seemed so, I don't want to say negative, but negative. I never took a liking to her and though I knew she loved Emma, it seemed so forced.
At that time, I was an "enhanced assistant"which basically means I was "technically" hired for one particular child, but in reality I helped with them all. The little girl I worked with used a walker and was dealyed in her speech and development and as I think about it right now, looked ALOT like Camryn. I can't go into her story right now, as I get off track easily and want to focus on Emma, but I will say that little girl was an innocent child born into a really crappy family. And that's all I will say for now.
So, because I was busy with my assigned student most of the day, I really didn't get to spend a lot of one on one time with Emma. From what I had heard and observed she didn't talk much and when she did it was her own language. Her eyes, for all their deep brown, were eerily vacant at times and she seemed as if she lived in a world of her own. She had trouble staying on her cot at nap time and would "talk" to herself throughout the day. My student started missing more and more school, which meant I was free to help with the other kids more. Again, they all had a story and stole my heart, but I have to stay focused. This was before Dylan was in the class and at this time, if a student had a hard time resting at nap time, an assistant could walk them around the school while the others slept. I volunteered to walk with Emma, as I found her fascinating. I would take her tiny hand in mine and we would walk the halls. The school was an open campus, so we weren't confined to the inside. I would walk her through the schools butterfly garden and always name each bug and flower. I knew we weren't going to have a conversation about it or anything, but she was a child and she needed to be talked to, regardless of whether she talked back. We would take the winding path to the library, turn around and pass the huge live oak. One day in the fall, when the acorns were on the ground, Emma bent down and picked one up. "Acorn" I said,"Baby tree". She pinced it between her thumb and pointer finger and brought it so close to her eyes they nearly crossed. She would examine it and roll it back and forth in her hand, but not a word, or at least not a word I could understand. And then we would keep walking. We did this for the next couple of months, as my student got very ill and was out for long periods of time. And every day, Emma would pluck an acorn off the ground and I would say "Acorn.Baby tree." I tear up at this because I have these very converstaions with Camryn. Then one day, when Emma was particularly antsy at nap, I volunteered to walk with her. We followed the same path we usually did and as we came to the oak tree, Emma picked up her acorn. I can't remember why, but I was looking the other way, not paying attention to what she was doing and then I heard it. The softest, tiniest but clear as a bell voice said "Baby." I was flabbergasted! She said baby! She said it! All these days I was saying it to her just because,hoping she'd get it but figuring probably not, but she did! "Yes Emma, yes! Baby!" I was so ecstatic that I grabbed her by the hand and raced back to the room to tell the other teachers. I was so happy and so proud and completely inspired.
A month later, on a lazy Sunday morning, I sat at the dining room table to read the newspaper sprawled out in front of me. Fifty percent chance of rain...sale at Macy's... Child 5, Drowns in Backyard Pool. I screamed "Oh my God!" and I cried for so long after.
They said it was an accident. They said her stepdad was out, her mother in the garage doing laundry and her sister and her were "playing" inside. They said she was nude, except for a pair of cowboy boots, which probably filled up with water as soon as she fell in. And they said her mother screamed when she found her and although the neighbors tried to bring her back, it was too late, she was gone.
Her birthday had been the Friday before and her mother was to bring in cupcakes, but she forgot. She said she would bring them in Monday, but there would be no need. I was not a mother then, not even an adult, but I remember thinking that something just didn't seem right. These days if you asked me if I would ever, EVER leave Camryn unattended around a pool of water, the answer would be "No way in hell!" She is drawn to water and has no fear of the dangers it can bring. And although I had no idea what Autism really was back then or that Emma was in fact Autistic, I knew that no child should be left alone around a pool, and certainly not a child like Emma. Yet, she was and she drowned. Why?
I could never shake the feeling that maybe this wasn't an accident. I'm not suggesting it was on purpose either. More like a mother who was tired, scared and alone. A mother who loved her child, but didn't know how to raise her and had no hope for her daughter's future. A mother who maybe, just maybe, had given up, checked out, gone numb. And for all the anger I had for her, all the hateful thoughts I had about her, now that I am the mother of a child whose future is as uncertain as Emma's, I feel so sorry for her mother. Because as ugly as this may sound, I have been in that womans wrinkled shirt and scuffed up heels. Feeling so defeated that fighting was no longer an option. Feeling so certain it would all be in vain, so why bother. Now I am not at all suggesting that I thought about harming my child. That would NEVER EVER happen. I am saying that there have been times on this Autistic journey that I have felt like giving up, feeling sorry for myself and just not trying so hard, or at all for that matter. I would be lying if I said I had never fantasized about a life without screaming and public meltdowns and injuries to other kids and off limits outings and vacations. Yes, I have daydreamed about it all. How nice it would be to pack the kids up for the weekend, take them to Disney and let them play along others as we watched from the side. How amazing to go to Target and checkout without Camryn biting herself and screaming in frustration because the cashier is scanning the dog bones. And how truly luxurious to sit out in the fenced backyard with all my kids, let them eat popsicles and play in the sprinkler with no fear of Cams pinching her little sister so hard she bleeds or pulling Masons hard so hard she falls to the ground. And though I knew nothing of Emmas homelife or her idiosynchrosies (sp?) I know the heartache her mother felt when the doctors told her Emma wasn't"normal" and I know the sadness her mother felt when she looked at her older daughter and knew that she would always be responsible for Emma when she and her husband were gone and if her sister didn't take care of her, who would? Who would love her like her mother did? And I know the exhaustion at the end of the day and the mornings you literally drag yourself out of bed, fearful of what the day might bring. And I also know the love she had for Emma. That undeniable, inborn protectiveness all mothers have for their young. The hopes that the best the world has to offer would be within her reach.
I think about Emma often. I go over that story in my head. And I see it all so differently than I did back then. Emma was Autistic. I'm sure of it now. But sixteen years ago, that word was not well known in society. There was no Autism Speaks, no puzzle piece bumper stickers. There wasn't half the information and interventions available today, not to mention the prevalance in the population. And even with all the resources out there now, I still feel so overwhelmed and helpless at times, so I really can only imagine how her mother must have felt. I wonder how she is today. I wonder if she is at peace with Emma's death and how her life has turned out. I wonder if she was ever able to look past the heartache and frustrations and find the beauty and good in the little girl who was different than most. I wonder if she ever, just once, considered herself blessed to have the experience of raising such a child. I wonder if it ever crossed her mind that things might get better, that it wouldn't always be so hard. I wonder if she knows I still think about her daughter and that now it's more personal than ever. I feel for Emma's mother and wonder how many other's were/are just like her. I am so blessed to have such support from family and friends. To be able to talk with others and get a break and have access to good schools and therapies. And although it is too late for Emma's mom, I hope that no one ever feels that they have to go through this quietly and alone. It's okay to talk about it, in fact, I find it necessary. It's okay to say it's hard and it's sad and it's scary and that yeah, at some times it really, really sucks! I think you can make yourself crazy trying to pretend that everythings okay, you've got it all together, you can handle this. It's okay to admit defeat, as long as you pull yourself up determined to win the next round. Raising Autism can be a real challenge with more downs than ups sometimes, but if you just go with it, really go with it, really experience it, really feel it, I think you will find it will be the most rewarding thing you will ever do in this life!
Thursday, July 15, 2010
The circle
Week four, day four and things are going great! Besides the usual pinching and scratching incidents, Cams is doing extrememly well at camp! And since nothing monumental has happened in the last 48 hours, I decided to go retro today and take you through the early years in more detail. I briefly wrote about it when I first started blogging to catch everybody up to present day, but there was so much left out that I really just want to revisit it and fill in some blanks. Maybe someone reading this may even be going through new diagnosis of Autism or suspect Autism with their child and maybe, just maybe,reading this may help.
Okay, so I guess I'll start about five years before I met Brad and the idea of having a child of any sort was far, far from my mind. I was eighteen, still living at home and working at the mall. College? Sometimes. I would go for a semester, take two off, yes I was a real go-getter! ;) Hey I'm a writer, what can I say? Bored with my mall job, I heard about a position opening up at the elementary school I had gone to as a kid. It was for a teacher assistant working in a VE pre-k classroom, which for those of you not fluent in special education lingo, VE stands for Varying Exceptionalities, which means there could be a child with Cerebral Palsy, a child with Speech delay and a child with epilepsy all in the same classroom. And this particular unit was "Reverse Mainstream". Which again, for those of you going "Huh?" means that there were also regular ed kids mixed in as well. When you put a special ed child in a regular ed classroom it's referred to as "mainstreaming", so when you put regular ed students in with special ed students it's the reverse, hence the name. Anyway, now that we have the translations out of the way, it was a pretty cool setup. The whole idea was to teach "normal" kids acceptance of those with disabilities and studies over the years have shown that it has been highly successful. So, I was very interested in this position as I loved kids, had a soft spot for the elderly and disabled and so happy to be at my old school. I got the job and my intro to the world of special education began. Diseases, syndromes, disorders I had never even heard of! I had no idea all of this was out there! And these innocent little babies, shuffling through the door in their leg braces and walkers, some being wheeled off the buses by their personal nurses, tubes in their noses, ports in their chests, heartbreaking! Others ran free, and to the casual observer looked like a "normal" kid, but when you sat down to talk with them, you realized your words were in vain, as they stared past you, focused on something only they could know. And of course there were the regular ed kids, bouncing through the door, talking about this cartoon and that new toy, piecing together farm animal puzzles and stacking wooden blocks. Fourteen children, so different, but yet so the same, all mine for seven hours of the day and I loved it!! Oh there was fear at first. The little boy with CP, so bent and frail in his wheelchair, what if I break him when I put him on the toilet? The girl who has seizures, what do I do if she has one in the room? The girl with spina bifida, the boy with Williams syndrome, the child with Autism. Eventually I learned what each childs challenges and strengths were and each day I was less afraid. I grew to love each and every child and actually dreaded Christmas break because I missed them so much! I know, crazy right?
I remember one little boy in particular. Dylan, a beautiful little guy with blonde hair, fair skin sprinked with light freckles and big blue eyes peering out from behind red spactacles. He had an obsession with Big Bird, he had an obseesion with riding the bus and he had Fragile X, a spectrum disorder. Everyday, every day, he would get off the bus, Big Bird puppet on his hand, flapping his arms wild with excitement. "I ride the cool bus (school bus)" he would say with sheer delight. He loved it! With a great big smile, he would walk in the classroom, his laugh a little like Herman Munsters and just crack up at....well nobody really knew and I just got the biggest kick out of him. And most of the time he was happy and funny and adorable, but sometimes... not so much. And you know that little girl with the little curl right there in the middle of her forehead? Well, he was her male couterpart. When something happened that Dylan didn't like, Dylan didn't hesitate to let you know and boy did he. He would scream, cry, thrash around. Those were the days when you could still make physical contact with a child without fear of being sued for all your worth, and often times I would have to restrain him, coming at him from behind, wrapping my arms and legs around his and just letting him scream, but not be able to hurt himself or anybody else in the process. I remember one day in particular. It was nap time and Dylan did not want to stay on his cot. He started one of his meltdowns and I got behind him, wrapped myself around him and rocked back and forth like a human rocking chair, shusshing him, his tears soaking my forearms. I wished I knew what he was thinking and how to get through to him. I loved him and I felt for him and for his parents. And it never,h ever crossed my mind that one day I could be holding him again, only he would be a girl and his name would be Camryn and he would be mine. And thank God it never did. That's the beautiful thing about naievete. It really is so blissful, so beautiful. Because if it did ever cross my mind that one day I could bear a child that was like this, that would present these challenges that made me feel sad and helpless, I don't know that I would have taken the chance. And although I would have been sure to have dodged that very scary bullet, I would also have robbed myself of the amazing love and joy that all my girls have brought me. So, in all my sweet ignorance, I kept on working with these kids. I worked with them for three more years in fact. Loving each and every one of them, and each day learning more and more about stints and shunts and therapies and meds. I saw kids get better and I saw children die. It was intense for someone as young as I was. But looking back now, it was so necessary.
Dylan would have to be about twenty one now. I have no idea where he is or how he turned out. He may still be at home needing assistance in daily life, or he may be very high functioning, possibly able to live on his own. And I'm sure he has no recolllection of "Miss Eve" or preschool at all for that matter. But that little boy made an impression on me long before I ever knew how deep it would be. And right now my daughter ,who is obsessed with Oobi and also riding the school bus, is at a camp where teenagers are the assistants. And the odds of one of those fourteen teens growing up and having a child with Autism, or any special need for that matter, are scary high. And so the story goes.......
Okay, so I guess I'll start about five years before I met Brad and the idea of having a child of any sort was far, far from my mind. I was eighteen, still living at home and working at the mall. College? Sometimes. I would go for a semester, take two off, yes I was a real go-getter! ;) Hey I'm a writer, what can I say? Bored with my mall job, I heard about a position opening up at the elementary school I had gone to as a kid. It was for a teacher assistant working in a VE pre-k classroom, which for those of you not fluent in special education lingo, VE stands for Varying Exceptionalities, which means there could be a child with Cerebral Palsy, a child with Speech delay and a child with epilepsy all in the same classroom. And this particular unit was "Reverse Mainstream". Which again, for those of you going "Huh?" means that there were also regular ed kids mixed in as well. When you put a special ed child in a regular ed classroom it's referred to as "mainstreaming", so when you put regular ed students in with special ed students it's the reverse, hence the name. Anyway, now that we have the translations out of the way, it was a pretty cool setup. The whole idea was to teach "normal" kids acceptance of those with disabilities and studies over the years have shown that it has been highly successful. So, I was very interested in this position as I loved kids, had a soft spot for the elderly and disabled and so happy to be at my old school. I got the job and my intro to the world of special education began. Diseases, syndromes, disorders I had never even heard of! I had no idea all of this was out there! And these innocent little babies, shuffling through the door in their leg braces and walkers, some being wheeled off the buses by their personal nurses, tubes in their noses, ports in their chests, heartbreaking! Others ran free, and to the casual observer looked like a "normal" kid, but when you sat down to talk with them, you realized your words were in vain, as they stared past you, focused on something only they could know. And of course there were the regular ed kids, bouncing through the door, talking about this cartoon and that new toy, piecing together farm animal puzzles and stacking wooden blocks. Fourteen children, so different, but yet so the same, all mine for seven hours of the day and I loved it!! Oh there was fear at first. The little boy with CP, so bent and frail in his wheelchair, what if I break him when I put him on the toilet? The girl who has seizures, what do I do if she has one in the room? The girl with spina bifida, the boy with Williams syndrome, the child with Autism. Eventually I learned what each childs challenges and strengths were and each day I was less afraid. I grew to love each and every child and actually dreaded Christmas break because I missed them so much! I know, crazy right?
I remember one little boy in particular. Dylan, a beautiful little guy with blonde hair, fair skin sprinked with light freckles and big blue eyes peering out from behind red spactacles. He had an obsession with Big Bird, he had an obseesion with riding the bus and he had Fragile X, a spectrum disorder. Everyday, every day, he would get off the bus, Big Bird puppet on his hand, flapping his arms wild with excitement. "I ride the cool bus (school bus)" he would say with sheer delight. He loved it! With a great big smile, he would walk in the classroom, his laugh a little like Herman Munsters and just crack up at....well nobody really knew and I just got the biggest kick out of him. And most of the time he was happy and funny and adorable, but sometimes... not so much. And you know that little girl with the little curl right there in the middle of her forehead? Well, he was her male couterpart. When something happened that Dylan didn't like, Dylan didn't hesitate to let you know and boy did he. He would scream, cry, thrash around. Those were the days when you could still make physical contact with a child without fear of being sued for all your worth, and often times I would have to restrain him, coming at him from behind, wrapping my arms and legs around his and just letting him scream, but not be able to hurt himself or anybody else in the process. I remember one day in particular. It was nap time and Dylan did not want to stay on his cot. He started one of his meltdowns and I got behind him, wrapped myself around him and rocked back and forth like a human rocking chair, shusshing him, his tears soaking my forearms. I wished I knew what he was thinking and how to get through to him. I loved him and I felt for him and for his parents. And it never,h ever crossed my mind that one day I could be holding him again, only he would be a girl and his name would be Camryn and he would be mine. And thank God it never did. That's the beautiful thing about naievete. It really is so blissful, so beautiful. Because if it did ever cross my mind that one day I could bear a child that was like this, that would present these challenges that made me feel sad and helpless, I don't know that I would have taken the chance. And although I would have been sure to have dodged that very scary bullet, I would also have robbed myself of the amazing love and joy that all my girls have brought me. So, in all my sweet ignorance, I kept on working with these kids. I worked with them for three more years in fact. Loving each and every one of them, and each day learning more and more about stints and shunts and therapies and meds. I saw kids get better and I saw children die. It was intense for someone as young as I was. But looking back now, it was so necessary.
Dylan would have to be about twenty one now. I have no idea where he is or how he turned out. He may still be at home needing assistance in daily life, or he may be very high functioning, possibly able to live on his own. And I'm sure he has no recolllection of "Miss Eve" or preschool at all for that matter. But that little boy made an impression on me long before I ever knew how deep it would be. And right now my daughter ,who is obsessed with Oobi and also riding the school bus, is at a camp where teenagers are the assistants. And the odds of one of those fourteen teens growing up and having a child with Autism, or any special need for that matter, are scary high. And so the story goes.......
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