We began our journey into autism just over 9 years ago with the diagnosis of my oldest child (big pants). His early signs that stuck out the most were his lack of communication and his repetitive behaviors (hand flapping and tip toe dancing). He did not make many sounds and did not develop language in a typical fashion. His first word was "mom" but it wasn't functional. His first sign of any functional communication was when he starting using the sign for "more." What a blessing that was! It was sad, but deep down inside since he was just a baby my instincts were telling me something was wrong. As a special education teacher and ABA therapist I knew something wasn't "right" and it didn't take me long to figure out he had autism. It was sad and challenging just like all autism moms share. I think the hardest part for me was that so many people close to me just assumed that I would know what to do and make everything okay. In a way that took away from my own grieving. Yes, as a teacher with a great deal of experience with autism I know how to "educate," but it never gave me the opportunity to grieve like a "mom". I wear two hats, teacher and mom and it was a tough balance at times. At the time of diagnosis, we were living in an area where there wasn't much to offer in the way of services so we moved when I was 5 months pregnant. Our family thought we were nuts since it was a huge financial drain and we were moving away from our support system, but it was the best decision we could have ever made (they all agree now too). Now he is 12 and doing very well. He is my gentle giant. His smile is big and bright and his hugs make my day.
Our daughter (little pants) was diagnosed 6 years ago and that was more of a blow for me. When big pants was going through his evaluations and we were seeking a diagnosis I found out I was pregnant (talk about bad timing). I had read all of the research that said siblings have a greater chance of having autism when there is already one diagnosis. I clung to the hope that we would not be a part of this statistic. When we found out we were having a girl, I thought, "whew" more boys than girls have autism so maybe we really will dodge the bullet of having two on the spectrum. It didn't take too long- at the age of 18 months I knew what was going on and I cried my eyes out. This was almost more devastating to me as I was already knee deep in the chaos autism brings into one's life and I wasn't ready to start over with my little baby girl. On the plus side, we were already immersed into a system of therapy and education that was working well so we were able to plug her in and individualize for her needs. She is the sweetest thing and we are lucky that she is as affectionate as her brother. Her giggle and other idiosyncratic sounds are music to my ears.
Along the way we have tried just about every therapy, supplement, diet, snake oil and educational program we have had access too. Looking back I shake my head at some of the things we have tried like sending poop in the mail for analysis! Oh my gosh in writing it cracks me up! All of these stops along the way were necessary though. We needed to weed through it all to find what worked for us. We followed our instincts and I wouldn't change any of the things we tried, as they were all important pieces to the puzzle (pardon the pun). We have blazed our own trail in many ways, as we eventually took our children out of the public school system (just not our cup of tea). Don't get me wrong, our school is great, but it just doesn't have the resources we are looking for. It is kind of a conflict of interest at times since I am a special education teacher. We are settled now into a program that provides ABA (applied behavior analysis) therapy for both kiddos. Big pants attends a private school just for children on the autism spectrum and he receives his academics, ABA, and speech therapy there. He even plays basketball on the school's team. Go Eagles! He also goes to art therapy on Saturdays and we are huge fans our local YMCA where we are always welcome! Little pants receives services through the same organization, but she attends a center based program where she receives her ABA, speech and occupational therapy. She will attend the same school as big pants someday, but she isn't quite ready yet. Little pants needs a Dynavox to communicate as she has so much to say, but doesn't have the expressive communication to get it out. The Dynavox has really opened up her world. That is a post of it's own.
The title of my blog, comes from the fact that big and little pants prefer to never wear pants. Crazy, but true. Thank goodness they wear them in public, but when they get home all bets are off. "Where's your pants?" and "Go and get your pants!" are phrases bouncing off of our walls each and every day more times than I can count. It seemed like an appropriate title for our story.
I could go on and on, but will save the rest for separate posts. This is just the Reader's Digest version of our story. More to come...
Yes my 3 year old daughter has ASD, and she is ALWAYS naked!
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