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.
Thursday, July 22, 2010
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.......
Wednesday, July 7, 2010
A Happy Camper!!
Week three, day three of Camp Coast and I am loving it, Cams is loving it, Nat and Mace are loving it! The freedom of dropping Cams off and then saying to her sisters, "Okay, where do you want to go today?" is amazing! So far ,we haven't tackled any major outings due to the rain, appointments, etc., but just coming home and letting them have free rein of the house with no interference of Autism has been so nice for them. And when we go pick up Cams, they are actually excited to see her and play with her,which doesn't happen a lot!
And picking Cams up is always an experience. I swear there hasn't been a day yet that I don't walk with fear into the camp office, anticipating the news that Camryn has been kicked out for hurting. And these fears are not without reason. The very first day of camp, I walked in to sign her out and was greeted by her teacher with the news that Camryn had pinched just about everyone in the camp, teachers included. Yikes! My eyes got big and I bit my lip in embarrassment. The teacher was talking but I heard nothing, as my mind was fast forwarding through a summer of Camryn at home and all the things that would and would not be happening. There would now be none of this and lots of that and ohhhh, how is this going to work? "So, we will keep working on it with her and hopefully she will improve." What? Did the teacher just say Cam could stay? "She can stay? She's not getting kicked out?" "Of course not" her teacher replied. "Believe me, we have dealt with alot worse. Just keep practicing nice hands with her at home." "Oh my gosh! I love you Ms. Kimmy!!" Whew!! Summer was still looking good!
That first day they had gone horseback riding, which for those of you who saw our show know is very therapeutic for children with special needs and Cams is s big fan! They said she broke away from the crowd and ran to the horses, putting her tiny hands on their mammoth heads and kissing their nose. Can anybody say fearless? She had a blast, despite the numerous pinching incidents.
Day two was swimming. Again, if you know Cams, then you know she is a water freak! She loves it!!! And that is precisely why we will not be having a home with a pool anytime in the near future. That girl will walk right in, bathing suit or flannel pajamas, doesn't matter. And this would not be that big of a deal if she could swim, but she can't, hence the big deal. But at Camp Coast, they not only get to go in the pool, they get lessons once a week! I know, amazing right? I knew she would love that and so going to pick her up I couldn't wait to hear about it. Well, yes she did have a blast in the pool. And yes, the pinching was a bit better, BUT, there was the biting a kid on the face incident. My eyes even wider than the day before, my mind was shouting "You have got to be kidding me?! Oh, she is surely out now!" I began to babble outloud to her teacher, "Oh, I am so sorry! Is the boy okay? These two days of camp have been great, maybe we can try again next year." But again, Ms. Kimmy gave me the assurance that Camryn was fine, the boy had gotten in a "tee-pee" with Camryn (something I highly recommend NOT doing) and she didn't want him there so she bit him. Handled, Camryn style. She was disciplined, he was fine and actually verbalized to the teacher that in the future if he sees Cam in the tee-pee he won't be joining her and all was well. Yay!! And from there, while there have been more pinching and scratching incidences, they have been much more scattered than before. She is having so much fun and doing so many things that she wouldn't otherwise have done. Last week they went bowling, which while I was a bit concerned about the whole 10 lb. solid ball in the hands of a child who randomly throws things, I had faith that her counselor would keep close watch, which she did. Tomorrow they are going to the Florida Aquarium, where again, I have fears, mostly for the free swimming stingrays and live touch tank inhabitants (may God be with you) but I know she will love seeing the fish in the tanks. And lucky for them, they are in a tank with a lid, unlike the the little guys at Petsmart who still talk about the day they almost lost grandpa to a giant hand with pink fingernails. I'm not sure when, but the camp is going sailing and also to a bounce house facility. The horseback riding continues every Monday and on Wednesdays they chill, watch movies, do art and just relax( and I use that term oh so loosely). As you can tell, I am thrilled with Camp Coast. I feel so blessed that we were able to get Camryn in, as it really has made such a difference in our lives and sanity levels. For anybody home with their kids during the summer, you know how hard it is to entertain them. Even with blow up swimming pools, paper and crayons, Nintendo DS's and 700 channels on T.V., they still manage to bore quickly and frequently feel the urge to tell you so. Now, with a child on the spectrum who doesn't find amusement in drawing, video games, televison shows or any of the ten million toys you purchased in vain that sit untouched in their rooms, summertime can be downright painful for their caretaker. Having camps like this one are like gold to parents like us and the fact that they are funded solely by donations is scary. I know I mentioned in my last post about the whole donation thing and I really am not trying to harp on it. I get no commission off donations made, no discount on Camryns tuition, only the peace of mind knowing that next summer, there will be a place for Camryn, where she can run, play and experience the world in all her Autistic splendor with no one judging her, making fun of her or fearing her (okay, that's not true, they will fear her, the little crab). And yes, selfishly, I will be able to have a break from round the clock Autism, which can really take a toll on your spirit. And my other two little girls will have a summer to remember for the good times they had, for the "normal" times they had, running and playing in the yard, having their friends over without them having to lock themselves in the closet so Camryn won't pinch them (yes, that actually happened... so sorry sweet little Lucabella) and hanging out with me and having my undivided, Autism watch free attention. Things other parents may take for granted, but things I so, so appreciate. So, again, if you would like to make a donation, I am going to post the website and you can check it out for yourself and decide. I already have had people email me in repsonse to the last post, wanting to give. In these tough times, I know money is tight and even just passing on the word about this camp would help, perhaps finding it's way to more donors. Thank you so much!
Info on Camp C.O.A.S.T. (Children on the Autism Spectrum Together) can be found at www.suncoastymca.org Thanks again!! :)
And picking Cams up is always an experience. I swear there hasn't been a day yet that I don't walk with fear into the camp office, anticipating the news that Camryn has been kicked out for hurting. And these fears are not without reason. The very first day of camp, I walked in to sign her out and was greeted by her teacher with the news that Camryn had pinched just about everyone in the camp, teachers included. Yikes! My eyes got big and I bit my lip in embarrassment. The teacher was talking but I heard nothing, as my mind was fast forwarding through a summer of Camryn at home and all the things that would and would not be happening. There would now be none of this and lots of that and ohhhh, how is this going to work? "So, we will keep working on it with her and hopefully she will improve." What? Did the teacher just say Cam could stay? "She can stay? She's not getting kicked out?" "Of course not" her teacher replied. "Believe me, we have dealt with alot worse. Just keep practicing nice hands with her at home." "Oh my gosh! I love you Ms. Kimmy!!" Whew!! Summer was still looking good!
That first day they had gone horseback riding, which for those of you who saw our show know is very therapeutic for children with special needs and Cams is s big fan! They said she broke away from the crowd and ran to the horses, putting her tiny hands on their mammoth heads and kissing their nose. Can anybody say fearless? She had a blast, despite the numerous pinching incidents.
Day two was swimming. Again, if you know Cams, then you know she is a water freak! She loves it!!! And that is precisely why we will not be having a home with a pool anytime in the near future. That girl will walk right in, bathing suit or flannel pajamas, doesn't matter. And this would not be that big of a deal if she could swim, but she can't, hence the big deal. But at Camp Coast, they not only get to go in the pool, they get lessons once a week! I know, amazing right? I knew she would love that and so going to pick her up I couldn't wait to hear about it. Well, yes she did have a blast in the pool. And yes, the pinching was a bit better, BUT, there was the biting a kid on the face incident. My eyes even wider than the day before, my mind was shouting "You have got to be kidding me?! Oh, she is surely out now!" I began to babble outloud to her teacher, "Oh, I am so sorry! Is the boy okay? These two days of camp have been great, maybe we can try again next year." But again, Ms. Kimmy gave me the assurance that Camryn was fine, the boy had gotten in a "tee-pee" with Camryn (something I highly recommend NOT doing) and she didn't want him there so she bit him. Handled, Camryn style. She was disciplined, he was fine and actually verbalized to the teacher that in the future if he sees Cam in the tee-pee he won't be joining her and all was well. Yay!! And from there, while there have been more pinching and scratching incidences, they have been much more scattered than before. She is having so much fun and doing so many things that she wouldn't otherwise have done. Last week they went bowling, which while I was a bit concerned about the whole 10 lb. solid ball in the hands of a child who randomly throws things, I had faith that her counselor would keep close watch, which she did. Tomorrow they are going to the Florida Aquarium, where again, I have fears, mostly for the free swimming stingrays and live touch tank inhabitants (may God be with you) but I know she will love seeing the fish in the tanks. And lucky for them, they are in a tank with a lid, unlike the the little guys at Petsmart who still talk about the day they almost lost grandpa to a giant hand with pink fingernails. I'm not sure when, but the camp is going sailing and also to a bounce house facility. The horseback riding continues every Monday and on Wednesdays they chill, watch movies, do art and just relax( and I use that term oh so loosely). As you can tell, I am thrilled with Camp Coast. I feel so blessed that we were able to get Camryn in, as it really has made such a difference in our lives and sanity levels. For anybody home with their kids during the summer, you know how hard it is to entertain them. Even with blow up swimming pools, paper and crayons, Nintendo DS's and 700 channels on T.V., they still manage to bore quickly and frequently feel the urge to tell you so. Now, with a child on the spectrum who doesn't find amusement in drawing, video games, televison shows or any of the ten million toys you purchased in vain that sit untouched in their rooms, summertime can be downright painful for their caretaker. Having camps like this one are like gold to parents like us and the fact that they are funded solely by donations is scary. I know I mentioned in my last post about the whole donation thing and I really am not trying to harp on it. I get no commission off donations made, no discount on Camryns tuition, only the peace of mind knowing that next summer, there will be a place for Camryn, where she can run, play and experience the world in all her Autistic splendor with no one judging her, making fun of her or fearing her (okay, that's not true, they will fear her, the little crab). And yes, selfishly, I will be able to have a break from round the clock Autism, which can really take a toll on your spirit. And my other two little girls will have a summer to remember for the good times they had, for the "normal" times they had, running and playing in the yard, having their friends over without them having to lock themselves in the closet so Camryn won't pinch them (yes, that actually happened... so sorry sweet little Lucabella) and hanging out with me and having my undivided, Autism watch free attention. Things other parents may take for granted, but things I so, so appreciate. So, again, if you would like to make a donation, I am going to post the website and you can check it out for yourself and decide. I already have had people email me in repsonse to the last post, wanting to give. In these tough times, I know money is tight and even just passing on the word about this camp would help, perhaps finding it's way to more donors. Thank you so much!
Info on Camp C.O.A.S.T. (Children on the Autism Spectrum Together) can be found at www.suncoastymca.org Thanks again!! :)
Monday, June 28, 2010
Chapter Three
Today it is one month since we moved back to St. Pete. I cannot believe it has already been that long! And except for a few boxes of holiday items, everything that is necessary for daily life has been unpacked. Things have been going fairly well and for the most part, I think the move has been great for all of us, including Cams. I know I am happier, which is pretty important as you know the old saying if Mama ain't happy nobody's happy. And while that definitely rings true in our household, I am still one rung below Miss Cams when it comes to the ladder of happiness. Because it doesn't matter how beautiful the day is, how great your hair looks, or where you're going for dinner that night if Camryn is screaming and pinching everyone in the background. So at our house the saying goes " If Cams aint happy aint nobody happy!" And I have to say that Camryn is a pretty happy little girl, despite all the aggression issues we have. One of the things I love most about Cam is that her bed has two right sides, meaning she never wakes up on the wrong one. I don't care how late she went to bed, or how stuffy her nose is, that girl wakes up with a snap and a laugh and I absolutely love it!! I look forward to going into her room while she's still asleep so that I can put my face in her hair which smells like sweaty maple syrup and hear her giggle. She snaps her fingers and when I ask her "Did you sleep good last night?" she simply repeats the question, which as those of you with Autistic kids know is called echolalia, but I treat it as though she is really asking me and so I answer. Those moments are precious and shortlived, often over before you can say "Ri-Ri" which is the next thing out of her mouth, as she lives for that dog. And after that, forget about it! Riley is at the forefront of her thoughts as she scrambles out of bed to find the dog, pull her whiskers out and let the day begin! And after that, there is no stopping, there is no resting, there is no "Go read a book" or "Go draw a picture", it's just go, go, go until night, with several "No pinching", "No biting" and "No pulling the dogs jowels off!" thrown in. And remember, Cams is not my only child. I also have two other lovely little ladies who want my time and attention and also require adult supervision. During the school year, while the 5 hours left in the day after school lets out can be hard to fill for Cams, it's a cake walk compared to the dreaded seventy-something days of summer hell! A little less than three months of fourteen hour days that need to be filled from morning to night with activities for a child who doesn't "play" with toys, doesn't "play well" with others and doesn't stay seated for more than five minutes at a time? Is it any wonder I can be found waltzing down the school supply aisle at Target in early August, high from the smell of pink rubber erasers and freshly sharpened pencils? You laugh, but spend a summer with Cams and you'll be right alongside me, inhaling the Elmers and grinning ear to ear. So, with that being said, you may ask "Eve, if it is so hard to amuse Camryn during the day, how on earth are you writing this blog right now?" An excellent question! I am writing this blog right now because Camryn it at Camp!!!!! Yes, a camp for kids with Autism. They do exist, though nowhere in Charlotte County, which is why we no longer live there. The main reason for moving back to Pinellas was because of all the resources here. Last week I registered her at Sawgrass Elementary, where she will be in an Autistic Unit for the very first time ever! Another thing Charlotte County does not have. In her last school she was in the Communications Disorder unit, which had wonderful teachers, but was not tailored for her needs. And two days after moving here I signed her up for Camp COAST (Children On the Autism Spectrum Together). I found out about this camp at the Autism Speaks Walk in May. I ended up meeting a woman with a daughter Camryn's age who was on the spectrum (Thanks Tina!!! ) Meeting the mom of an autistic girl doesn't happen often, as the ratio of autism in boys is 3 times higher than in girls. But, alas we met and come to find out my mom and her aunt used to be close friends and I spent much of my childhood with her cousin, teeny tiny world! She told me about the camp and how her daughter was attending. I wiped the drool from the sides of my mouth as she explained all the camp offered. Horseback riding every week, swimming, sailing.... I so wanted to put Camryn in, but we hadn't yet moved and I was sure that is was probably full by then anyhow. At the end of May, when we found where we would be moving to, I decided to torture myself and call Camp Coast to see if by chance there was a spot left. And lo and behold....there was!!!! I was jumping and shouting and flailing my arms in the air. YES!! What did I need to do, when did it start and how much did it cost (not that it mattered, we would take out a loan if need be lol) Lots of paperwork, shot records and doctors approval, June 21st and expensive, but do-able. The only hitch was that each child needed to be accepted, as in the director needs to see their IEP and then calls their teacher and privately discusses that child, their habits and behaviors and whether or not Camp Coast would be a good fit for them. As soon as I heard that I made yet another desperate call to our beloved Ms. Mills. It went something like this..."Ms Mills? Hi it's Eve again. Listen, I have an opportunity to put Camryn in an awesome camp that runs for 7 weeks from 8-3 daily. 8 to 3! Monday through Friday! Seven Weeks!!!! Now, you will be getting a phone call from a "Vicki" wanting to know about Camryn's behavior and if she would be good for this camp so.....Oh, I love you Ms. Mills!!!!" I ddin't have to explain. She knows Cams and loves her as much as the rest of us do, but also knows what a challenge she can be and how good this camp would be for her as well as the rest of the family. She spoke to Vicki and then I had to wait. They spoke Saturday and by Monday night I had heard nothing. Ms. Mills, what did you say? Was your end of year gift not up to par? Was this gonna cost me? Tuesday afternoon I was out couch shopping with my mom. I was mid-sentence with a sales person when my cell rang. It was Vicki! Camryn had been accepted!!!!! Ms Mills came through! Now, the next step was registering. And it was on a first come basis. Acceptance does not guarantee a spot. Money does. I was in St. Pete and needed to be in Clearwater to register her. I hung up, told saleslady Sue love the couch but gotta go and sped up to register Cams. She got in and so far it has been wonderful!!! When Vicki was explaining to me all that the kids would be doing, I started to cry. Horseback riding EVERY Monday! Swimming twice a week, lessons included! Sailing. SAILING!!! CAMRYN sailing! When would that EVER happen?? Each student has a personal assistant with them all day. They are teenagers who volunteer and go through a very intense training session to learn how to work with kids on the spectrum. Already moving home had paid off. This NEVER would have been possible in Port Charlotte. Her first day was last Monday which you know I was counting down to. For those of you who know me, I don't even have to say this. But for those of you who don't, let me reaasure you that I adore Camryn. She is my sunshine, like my other two daughters. But the sun doesn't always shine. There is rain and thunder and lightning and hail and hurricanes and tornados and oh, anyhow my point is, like the weather, Cams can be unpredictable with little or no warning of change. And I don't always carry an umbrella. Also, summer is not just about Camryn. This is also Mason's time off and Natalie's time with her sisters. I remember my summers as a kid, lounging in bed till I felt like getting up. Watching T.V., running around outside, going on daytrips. I want those things for my kids as well. But it's hard to loungse in bed with Camryn climbing on top of you and pinching your face. And watching T.V. can be a challenge with Cams standing directly in front of it, then trying to scratch you on the couch when you ask her to move. And field trips with Cam? Interesting to say the least. It breaks my heart to see Mace and Nat just trying to be little girls having fun and Camryn hurting them for no reason. It sucks! So, with Camryn in camp, Mason and Natalie have time to do their thing without the possibility of injury. And I get the chance to be a "normal" mom, doing "mom things" with them without the limits of Autism. And Camryn gets to have her own time and attention and do things she would never get to do otherwise. It works for all of us. And until 3:00 p.m. all is well. Now after camp, when Cam is worked up, tired and hungry, that is another story. But four hours to fill as opposed to fourteen? I'll take it anyday of the week and since Monday through Friday are already accounted for, anybody know of a weekend camp? ;)
Note: Camp Coast is housed at the Clearwater YMCA. It is strictly a donation based program which requires about $7500 to run seven weeks with 15 campers in each session. Last month, the director reported, with tears in her eyes, that so far they have $695 dollars raised for summer 2011. If you would like to make a donation, I know it would be so appreciated, whether it be two dollars or $200.00. I can get you the information if you know of somebody who may wish to give to this AMAZING camp. Thank you :)
Note: Camp Coast is housed at the Clearwater YMCA. It is strictly a donation based program which requires about $7500 to run seven weeks with 15 campers in each session. Last month, the director reported, with tears in her eyes, that so far they have $695 dollars raised for summer 2011. If you would like to make a donation, I know it would be so appreciated, whether it be two dollars or $200.00. I can get you the information if you know of somebody who may wish to give to this AMAZING camp. Thank you :)
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