They're Baaack!

The kids are back in school! Yay!!! I love my children dearly, but after spending ninety-something days in a row trying to entertain them I start to get a twitch in my eye, which clearly indicates my sanity and patience levels are dangerously low. So even though it felt like I had just closed my eyes when the alarm screeched us awake the first day back,not to mentiong it was pouring and we had to park out in a mud bog and hop-scotch muck puddles to get the kids to their classrooms, I was so happy to get them back at school no amount of rain could dampen my spirit.
Of course I still have Nat at home, but come next week she will be attending Pre-K for three hours a day and then world look out, because Mama hasn't had a free week-day morning in four years!!!  I cannot wait!!
 Mason was very nervous about the first day and understandably, as this is a brand new school for her, with no familiar faces in sight. I felt for her, because I had to start a new school in 8th grade and if I close me eyes and picture myself walking down those lonely hallways, my stomach still tenses up at the thought. But the thing about Mason is that although she tends to be shy at first, it doesn't take her long to warm up and each year I see her taking less time and less prompting to talk to new people. I have been working on this with her since she was a toddler, because if there one wish I have for her it is that she does not let fear hold her hostage,as it did me for so long. And Mace has an advantage over the other kids in her class because her teacher happens to be a friend and former co-worker of my mom's. And for the first day my mom, or "Gigo" as my girls call her, was at their school, helping kids find their way to their classrooms at the beginning of the day and to their parents car in the afternoon. For those of you who don't know, my mom works for the school system in the Title One division, which is why she was able to do this. My point is, Mason was nervous, which I took very seriously, but I made sure to point out how lucky she was that her grandmother was at the school and that was something most kids don't get to experience and that for all the knots in her stomach and fluttering of her heart, she was going to be just fine. And she was. Her teacher is awesome, her classroom is on the second floor, a stuffed Patrick from Spongebob sits in the reading corner and she saw a baby raccoon on the court at P.E. When you're nine, being impressed is easily achieved.
Now Cams, as usual, was another story. I tried as much as possible to prepare her for the first day. She has had so much change this summer that I can only imagine what she must be thinking. We moved to a new house, she went to camp over the summer with strange teachers and different "friends" and now I'm in her face talking about going to school tomorrow and seeing her teacher, to which she replied "Ms. Mills" (her teacher from the last two years) "No, not Ms. Mills. Ms. Lopez" I told her. To which she replied "See Ms Kimmy", her teacher from camp. "No,not Ms Kimmy, Ms Lopez. She's your new teacher at your new school." To which Cams replied "Mr.Bill, he wears a funny hat." Mr. Bill was her bus driver for the past several years and every Friday he would wear some crazy hat from his collection. We miss Mr. Bill. :(  "No, not Mr. Bill. Ms Lopez, she's your new teacher. And Mrs.Tee, she's in your class too." I was trying, but it's just such a mystery what she's comprehending. "Are you excited about going to your new school?" I asked as I tucked her in. "Ry-ry. She eats wet food. She likes licky face." And that was Cams thoughts about her upcoming first day of school. So when  Brad was putting her uniform on and I was fighting to braid her hair, the talk was of Riley and her "meat food". Well, at least she wasn't nervous. We dropped her off at her classroom first but because of the rain we were late and the class had already gone to P.E. so we took her by the hand and tried to find someone to point us in the right direction. Halfway down the hall we spotted Ms. Lopez. She walked up to Cams with her arms open wide. "There you are, I've been waiting for you Camryn" to which Cams gave her a snap and said "Ry-ry". And then Ms. Lopez took her by the hand, Brad and I gave her a hug and kiss, and our wishes for her to have a great first day and off they went, Cams and Ms Lopez. That was it! No crying, no hesitation, no "Who the heck is this lady holding my hand and walking me away from my parents?" Nope, Cams just went with it, as she normally does in these situations, which is both a blessing and a worry. I'm so thankful that she does not fear new people when it comes to times like these, as it is hard enough to send her somewhere new without really knowing what she understands about it and what she doesn't. I feel so guilty when I take her into a new school or camp and then have to leave her because I have no idea if she knows I'm coming back or if she's thinking "My mom finally gave me away. Guess I shouldn't have pulled Mason's hair this morning!" So the fact the she goes willingly spares me the heartbreak of leaving her screaming and crying. BUT, in other situations, like anywhere out in public, this carefree attitude towards strangers is really not such a good thing. The creepiest man in town with stringy hair, crooked,yellow teeth and soul-less eyes could walk up to Cams, offer her a lollipop and she'd take him by the hand talking about Ry-ry and Oobi and that scares the hell out of me! Which is something I hope she grows out of like tomorrow!
When I picked the kids up that afternoon, I spotted them sitting by the car circle, Mason cross-legged next to Cams with her hand up like Oobi, obviously trying to keep her sister amused. This year we decided to not put Cams on the bus, so her waiting in the car circle is a new thing and I was not feeling very confident that she would do well. Sitting Camryn in middle of a group of children can be a real gamble. Arms of every size and color, protected only by their shirts short sleeve, within reach of Camryns scratch happy fingers. And that's not all. Hair, hair everywhere, in ponytails, braids or worse ye,t free flowing, perfect for yanking and  pulling. Lanky legs and pudgy calves, criss- crossed applesauce in every direction. Oh the pinching that could be done! I imagined pulling into the car circle only to see kids running towards me, screaming in utter horror, a look of fear on their little faces, and Cams pounding the pavement behind them saying "I wanna give them a hug! Make good choices people" ( A phrase she took from her Pre-K teacher).
But no, to my welcome surprise, there were my daughters sitting with the rest of the school, just like any other pair of sisters waiting for their mom. My heart melted. It was a sight I thought I'd never see. Cams was doing it. She was doing it!! For all practical purposes she looked just like any of the other kids out there. So much so that the P.E. coach, a young guy about 30 or so, came over to her and asked her name, to which Cams replied "Ry-ry". Mason quickly corrected her,telling the coach her name was Camryn. Apparently, he didn't clue in that Cams was not your typical car rider and went on to ask her if she knew which car was hers in the line, to which she again replied "Ry-ry". Love it!!! I guess he was starting to get the picture, because he turned to Mason and asked " Do you know her?" And Mason answered, "I would say so, she's my sister!" Those girls crack me up!! I was watching all this go down from my spot waaaaaaaaayyyyy back in the line and I was wondering what in the world this man was talking to Camryn about. I was actually laughing out loud in the car when I saw Cams give him her "I don't care what the question is my answer is Ry-ry" look. As I got further up in the line, Cams saw me and broke away from the holding area. It was then very obvious that Sawgrass Elementary doesn't know Cams yet, because the adults were telling her to wait for Mommy, stop running, blah, blah,blah. Cams barreled through the crowd, her Ne Hao Kai-Lan backpack swishing back and forth hitting whoever was in her path. Thank God the speed limit is 0 in the car line because she ran right out to my car and opened the door, coach five steps behind her. Mason had tried to hold her hand, but fifty one pounds of skin and bones can't really restrain sixty five pounds of pure determination. Cams piled in the backseat, Mason was trying to climb over her, which agitated Camryn so she scratched Mason, who started screaming which agitated Cam more so she scratched Mace again, which made Mason scream louder and hit Camryn, all the while the coach is trying to shut the door and get me out of there so the line can keep moving. But Camryns backpack is in the way of her seatbelt and I can't reach it, Mason won't get anywhere near Camryn at this point and who could blame her and the coach seems oblivious that he needs to buckle Camryn. I can see the teachers with their walkie talkies, no doubt muttering that some crazy woman and her crazy kids in a land yacht SUV are holding up the line. I finally just say "Thank you, she's fine" so I can get out of there and pull over in the parking lot to buckle Cams.
That night at the dinner table, Mace is going on and on and on about her first day. How cool her teacher is, how gross the boys are, what they will be working on this year, who her best friend is,etc. After about twenty minutes I say "Okay Mace,let's ask Cams about her day. Cams, how was your day at school?" "Ry-ry" she says. "No Cams, not Ry-ry. What did you do at school today?" "Ry-ry" she answers again. "Cams, what's your teachers name?" "Ry-ry" she says. "Cams,your teacher isn't Ry-ry, it's Ms Lopez. What did you put on your tray in the cafeteria?" To which she anwered...can you guess? "Ry-ry" Now I knew she knew her teachers name wasn't Ry-ry, she didn't learn about Ry-ry at school and she didn-t put Ry-ry on her tray in the cafeteria, although it very well could have been dog because you never know with school lunch, but the thing with Cams is she will tell you when she's ready and chances are when you ask, she won't be ready. This is something I know about my Cams. As I was tucking her in bed, I heard her whisper "Ryland did a good job and Trinity did a good job" I recognized those names from the giant  laminated apple on her classroom door. Those were her classmates! "Yes Cams! Ryland did a good job and Trinity did a good job! Did Camryn do a good job?" She just giggled but I knew she knew I understood. She was telling me about her day the best she knew how. She didn't tell me what they sang in circle time or what she ate for lunch, but that's what notes home and monthly menus are for. That's how we communicate and although I wish it were more, it's so much more than I ever thought I'd get. She went to sleep and I got out her folder to sign her daily note. I added a comment on the bottom... "Sounds like Cams had a good day! I can't wait to hear about tomorrow!"

So This is What It's Like ( Thanks for the title Anna) :)

I haven't blogged in several days and while there has been much to talk about, there has been much more to do, but I couldn't wait anymore so with Natalie just picked up by my Dad for swimming lessons and Mason amused in her room with a movie, my only distraction is Camryn in her room,screaming "I need help!"from behind her baby gate. And although her screams are enough to make my ears bleed at times, it's only one kid making noise, which in this house is considered peaceful.
So this past weekend Brad and I took an impromptu mini vacation with Mason and Natalie to Orlando. Camryn didn't come and before you label us as horrible, uncaring parents, let me tell you why.
It  started last Wednesday when Brad said he was going to take Monday off and thought we could all go back to Busch Gardens again. For those of you who read my post about our last Busch Gardens trip, you probably will find no shock in my repsonse of "I'd rather poke my eyes out with sharp,pointy sticks!" Although the trip was classifed as a success as far as visiting a theme park with an Autistic seven year old, in the context of "I have a three day weekend, let's take Camryn to a theme park", it was a textbook crazy idea. And I so love my husband, because even in my total offense, he pointed out that yes, the last Busch Gardens excursion was rough, but we are a family, a family with an Autistic child and we need to do things together,even if at times it totally sucks. And I completely agree, which is why I went to Busch Gardens the last time. Did it, almost died, done for a very long time! I pointed out that while I admire him for wanting to include Camryn in all of our outings, that we also have two other kids who just might like to know how it feels to go on a trip without being scratched and bitten, and experience time with us where we can focus on just them and do what they want instead of what works best for Camryn. And oh yeah, without the horrified stares of several hundred people, you know, the way "normal"families do it.
Camryn had a fabulous summer, with horseback riding every Monday, swimming twice a week, sailing, bowling, bounce-housing, etc. so she certainly didn't miss out. And she was the only one of our girls who didn't get to spend alone time with "Nanny"(Brad's mom) over the summer because she had to go to camp. Camryn absolutely adores Nanny and "Papa Dave", so I knew she would be thrilled to spend a few days with them and they would be just as thrilled to have her.  So, it was set, what started out as a day trip from hell to Busch Gardens turned into a 3 day, 2 night stay in Orlando with Brad, Mason, Natalie and of course me.
As soon as we decided, I was like a kid going to Disney for the first time. Being a Florida native with Disney in my own backyard, I've been there more times than I can count. I've even been there with Mason twice. I've also done Downtown Disney numerous times, and two of those were with Camryn, but the last time I took Mason she was much younger and Natalie was a baby. Plus, the last two times were the ones where I brought Camryn as well, so while it was fun, it was challenging to say the least and it left me feeling drained and completely sorry for myself. But now that Mason was nine and Natalie four, they were the perfect ages to go on a trip and a trip to Orlando, you can't get more magical than that! We have never gone on a family vacation just us. We've taken trips where my mom and other people came along, but never just us and the kids because it's always been too hard with Cams. Not that we couldn't do it, as I know people do, but more that I didn't want to, as horrible as that may sound. We did take her with us to North Carolina once, but we couldn't hike or go into stores and the restaurants we did go in definitely knew we were there. Our condo was on the third floor with a balcony, so you can imagine all the barricades we had to make out of furniture and suitcases so Camryn coudn't get to it. The room she and Mason shared had a freestanding dresser which called for Brad and I to get very creative in how were going to secure it and it also had a lamp attached to the wall, you notice I said "had". There was a heated pool at the complex so we drove thirty minutes to town to get Camryn a bathing suit with an innertube built in. She was in the pool no less than a minute before she bit the tube, the suit deflated and we were out of the water for the night. Never mind the fact that  up until the last two months, she didn't sleep anywhere but her own bed, or sleep willfully I should say, so we brought the babygate with us to the condo,which caused major problems for Mason in the night when she had to use the bathroom. Can you say "Good Times!"
So, this my friends is why I was so excited to go on a vacation with my kids where I didn't have to worry about the neighbors in adjoining rooms waking up to screaming fits or worrying one of my brood would jump off the balcony.Not to mention, the freedom to roam amongst other families with young children and their tender skin, without the worry my child would draw blood or leave a bald spot. The freedom that you just don't think about if you don't have a child like Camryn. And what's funny is that, while one of the main reasons I write this blog is to educate those who have no idea what it is like, there were times on this trip that I found myself "lost" in the normality of it all,completely taking for granted that I was standing in an aviary at Gatorland surrounded by hundreds of lorakeets, my kids as well as myself covered in birds, with no thought that there may be a woman who couldn't bring her kid in because they would squeeze a bird to death in excitement. I sat with ease in the stands as we watched Shamu jump from the water, without the slightest worry the family behind me might have to leave early because their child couldn't sit through the show. And at Downtown Disney I walked, both hands swinging freely at my side, not even stopping to wonder if that woman in front of me with a death grip on her screaming son is doing so because he's a brat throwing a fit or if he's a child with Autism about to scratch a passerby. I had these moments, but I caught myself every time, as you can drive away from Autism but it is always on your mind. But I also had moments of "Oh my God, this is what it's like! This is what it's like to be a normal family!" Sure Mason and Natalie fought like cats and dogs, but that's normal.Natlie threw more than a few fits when she couldn't buy everything in the gift shop. But again, that's normal. And when Mason shouted out "This is the worst vacation ever!" when I scolded her for back talk, well that was just plain bratty, but also completely normal. It was something I had never experienced and while taking a trip with your kids is hardly a vacation, that is exactly what this was, a vacation from Autism. All the things that others may take for granted, I thanked God for under my breath. Waiting in line with little Natalie for the carousel. Taking a peaceful train ride through old Florida at Gatorland. Sitting on the sidelines while my girls splashed in the sprayground. All the things we would not have been able to do if Camryn was with us. All the things I wish I could do more of with my kids, all of them. But who's to say that I would have had such a great time, that I would have appreciated it so much if I didn't know what it's like on the other side. In fact I know I wouldn't have gotten so much joy out of having that time with Mason and Natalie and all their fighting and backtalk and gift shop fits if I didn't know the longing for it.
And when it was all over, and I pulled in my mother-in-laws drive and saw Camryns smiling face in the window I was so happy to see her. I walked in and she said " Give Momma a hug. Wanna see Ry-ry." She was sticky with pickle juice and smelled like Nicky, Nanny's dog that Camryn has her face shoved up on most of the day. As I bent down to give her a hug, Natalie walked past and Camryn pinched her. Natalie started screaming, Mason pushed Camryn , I scolded both of them. It was loud, it was chaotic, it was completely crazy. Basically it was our "normal" and it was going to make our next vacation so much sweeter!

Walking to a Different Beat

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.

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.

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?

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.

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.