Inside a life with Autism, Asperger's Syndrome, and PDD-NOS (ASD)Autistic Spectrum Disorders (ASD) consisting of, but not limited to Autism, Asperger's Syndrome, and PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified)
Our 12 year old son Cameron (now 17) was diagnosed with Asperger's Syndrome (AS) in November 2005. Update: I started this website, for reasons I've explained a little further down, shortly after my son Cameron was diagnosed with Asperger's Syndrome. Today, March 3 2011, I have added additional information below here, information about some of the things that happened prior to his diagnosis as well as some of the things that have happened since his diagnosis... Even as recent as today I am still learning the significance of those things that happened, and things that are still happening. I always knew that there was something "going on" with him, starting between 2 and 3 years old, but there was never a name put to it. He hit all of his milestones early. Lifted his head early, rolled over early, crawled early, walked early (8 months!), started jabbering, was a happy baby. He was current on his vaccinations. He became ill in January 2005 and I had him in to the doctors day after day, sometimes twice a day, trying to figure out what was wrong, as he got sicker and sicker. Eventually he was diagnosed with Kawasaki Disease. There's much more to this story (febrile seizures, severe deyhdration (requiring hospitalization more than once), stopping breathing, some type of what I now believe to have been "partial seizures", etc.) but I'll tell it all elsewhere here at my website. He was hospitalized and received Immuno-Globulin and the next morning he was back to about 80%-90% of himself. Then things started changing. Little did I know that Autism, Asperger's Syndrome, PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified) was moving in. He started slamming his head violently on any surface, not just one slam but 10-15-20 slams at a time. His then pediatrician told me to put him in a helmet and that he'd eventually stop... Story time at night... I'd sit with with both kids (Shelby is 2 1/2 years older than him) to read to them, or find "Waldo", but Cameron wouldn't directly participate. He would sit a little bit away from us and look at his own book. I was told by specialists that he was *just slightly delayed* (ironically, these specialists were Autism specialists but they never caught the Autism or Asperger's Syndrome or PDD-NOS, and at 3 years of age a psychiatrist with the group pronounced him no longer delayed - needless to say, that psychiatrist was unequivocally wrong, so way out in left field that he couldn't be seen from the home plate)... I was told by these same specialists to withhold his dinner at night when he threw it off the table, don't let him have anything else to eat, and then he'd be hungry enough in the morning to eat (now I know it was, and still is, issues with tastes, textures, etc., a common problem for kids, and even adults, with Asperger's Syndrome)... He used to stop breathing. Not while doing anything other than walking or sitting or whatever, it wasn't due to being startled or anything like that. He'd stiffen up in my arms, his eyes would roll back in his head, his back would arch, his lips would get blue. I remember during one of my many calls to 911, the operator told me, you just described a dead person to me. This still brings me to tears. He was 18 months old. He had ongoing severe ear infections. After about 2 years of begging for tubes for him, and the pediatrician turning me down every time, someone told me to tell the doctor to use a Tympanogram to check his ears. I told the pediatrician and he told me there was no need. I told him again, do it. In less than one minute of looking in Cameron's ears with the Tympanogram, the doctor's exact words were "Hmmm.... he does need tubes." (!!) He ended up having four sets of tubes, the first when he was one month shy of his 3rd birthday, the last set when he was in 1st or 2nd grade. *Update Sep 13 2011: His ears are giving him troubles again. We went into the doctor and he checked it out and sure enough the inner part of his ear never did form properly. He'll deal with this problem for life. He was "babbling" and trying to talk but he couldn't talk right. Instead of saying daddy, he would say daddy's name, Curtis. But he said it "Lurlis". Then after quite some time it became "Curlis". Eventually he was able to say "Curtis". I would ask him, do you know much I love you? I would then throw my arms wide and say "This Much!" Eventually, I would ask him, do you know how much I love you and he would open his arms and say "mee maw"... He was 4 years old. He became vicious, very very violent, he would pull my daughter and I to the floor with our hair, he bit his cousin in his cheek, he would pull the drawers out in the kitchen and throw all the contents throughout the kitchen, he would throw the dining chairs as best he could ... but he was just as mean to himself. And yet, other days he seemed the picture of content. "Cheese" was always a common word, whether a picture was being taken or not. Whenever he smiled he'd say cheese, cheese, cheese... I have beautiful pictures of him smiling and happy. I can still feel him in my arms. By the time he was three he was very limited in who he would let hold him but he would wrap his arms around me and not let go (when he wasn't pulling me to the ground by my hair when he was angry) ;-) ... Before this limitation came into play, he'd let other people hold him, not a lot of other people but some. I learned when he was about three years old that I needed to keep his environment as rigid as possible and that transition was, for whatever reason, a cause of terrible meltdowns (at that time I didn't know *why*, I just knew it was the way it was) ... and when he started Kindergarten I found that keeping a very, very strict (never to be broken) routine on the weekends (especially Sundays) ensured a better school week (even to today)... I was told repeatedly, by my parents, that he wasn't disciplined enough (my parents disowned he and I when he was 6 or 7 years old because he was *so misbehaved* and I *didn't discipline him enough* and he *wouldn't behave for them* and since I *was no longer allowed at their house, neither was he*)... He was in trouble a lot at school (starting with his first day in Kindergarten) and I was told by his teacher and the school officials that he was terribly misbehaved... I was told by his Kindergarten teacher that I must have done something very terrible to him over winter break because his behaviors had worsened so extremely when he went back to school after those two weeks (I lived with that guilt for years, heard those words in my head every day, until I found out that it wasn't anything I did, it was the transition from Kindergarten to home for a 2-week break and then back to Kindergarten from home that caused the problems -- classic transition issues)... And in all honesty I still hear those words, they still echo through my head. He was wrongly punished and disciplined in elementary school (I would go to the school and sit with him in the car and eat lunch with him when he was unfairly put on in-school suspension)... When he was 8, he was denied participation in an elementary school performance because he blew into the microphone during a rehearsal because that's what he'd seen someone else do at some time (kids with Asperger's Syndrome will see something and mimic it). In protest, and because he was so heartbroken that he'd been kicked out of the play, I kept him out of school the day of the performance... I was told by his 2nd grade teacher (whom he and I both loved, she'll always have a special place in our hearts) that Cameron is a "penguin" (of note because I found this mentioned in writings about Asperger's Syndrome when he was diagnosed and I started my research)... I was told by his 5th grade teacher that he "marches to the beat of his own drum" (another "of note" because this is something else I found when I started my research on Asperger's)... He saw a psychologist at school *every single week from Kindergarten through 5th grade* (the end of elementary school, and the middle school didn't contract with the psychologist)... In middle school he was unjustly assigned to Saturday "school" and I refused to send him because it wasn't school, it was picking up trash on the school grounds and he would be with the worst bullies and only one adult (which put him at risk of severe injury)... We were chided and had veiled threats thrown at us by the school, the district, and even the district's attorneys. Here's a very out-of-line letter from the Adelanto School District's attorney that we received, and on that same page I have broken down that letter and addressed each point. If you're having trouble with your school or district, check out this letter to see if it'll help you at all. He was *always* shunned by the neighborhood kids and seen as a bad kid by the parents... He saw a separate behavior specialist outside of our home for years and then transitioned to a psychiatrist when he was about 7 years old, and put on many different, terrible, medications... And there's *so much more* and I relayed *everything* to the various specialists he was seeing... I will try to write more about the myriad of his behaviors so that others can read and will probably see their own child in my writings. He was given various diagnoses - Bi-Polar Disorder, Obsessive-Compulsive Disorder (OCD), *extreme* General Anxiety Disorder (GAD), Oppositional Defiant Disorder (ODD), severe depression, and more. But never did any of these specialists suggest Autism or Asperger's Syndrome or PDD-NOS. He was terribly, viciously, violently bullied both in the neighborhood and at school. Kids with Asperger's Syndrome and High Functioning Autism and PDD-NOS are typically bullied mercilessly. In middle school, after one terribly violent attack when he was picked up by a student and thrown to the ground and blood poured, and we sat with the school psychologist and listed everything we could think of in regards to him, she suggested Asperger's. That was November 2005. I jumped online and cried (and cried and cried) as I read the symptoms of Asperger's Syndrome, the very same problems Cameron had, in the minimal information that I could find. I finally had a direction to head with him, I finally had an idea what was going on and how to help him, or at least try. I was sad to find out that he has Asperger's Syndrome but I also realized that it wasn't like it happened overnight. He (we all) had been living with it for 12 years without knowing what it was, the only difference now was that there was a name put to it, and as I mentioned, finally a direction. As I struggled to find information to help him I realized that there wasn't a whole lot out there. So I started this website as my attempt to make the world a friendlier and easier place to negotiate for those living with children that have Asperger's Syndrome or Pervasive Developmental Disorder (PDD-NOS). Since that time, the Internet has exploded with information. So now, while this website does have some "clinical" information about Asperger's Syndrome, there's a lot here about:
... And just about anything I can find that has something to do with Asperger's, Autism, and PDD-NOS If you have something you know about that can help others please tell me so that I can post about it here. I'm hoping that by writing about our lives and experiences and challenges and successes, that you will be able to pick through it and find things that help with your situation. :o) If you have any questions or comments or need any help with anything please do contact me and I'll do all I can to help, even if you don't have questions but need someone to talk to or unload on. Come with me and let's travel this journey together so that we always have someone to lean on; someone to laugh with; someone to cry with; someone who knows what those without experience with Asperger's Syndrome will *never* know; someone who understands and loves our children, and us parents, unconditionally... Diane PS: You'll find that many of the pages I've written here (the glimpses into our life) come from an "unhappy place", whether despair or anger or call it what you will. While Cameron has improved and his school situation is better, and he has a friend now (although things are nowhere near perfect), I'm keeping the pages I wrote when I first started this website because I feel compelled to let others see where we've been. It is so easy to feel alone and scared and isolated when your child/grandchild, the child you care for and love with all of your heart, is struggling with Asperger's Syndrome - maybe by keeping my lowest of lows available here for reading, maybe I can help someone to feel not so alone. I really do hope... Back to the top of this page about Asperger's Syndrome and PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) - From the Trenches
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