Monday, January 7, 2013

Playgrounds, Parking Lots, and Puzzle Pieces

It’s hard to believe that I posted this video almost 3.5 years ago as we were beginning our fundraising journey for Elf.  For some reason I was drawn back to this video today, and as always I cried watching the video.  I’m not quite sure why that video always evokes the strong emotions for me that it does; maybe the combination of hearing Caden’s daddy sing, reliving our autism story, or remembering how overwhelmed I was at the service dog fundraising task. Today though it also struck me how long 3.5 years really is and all that we have packed into that time.

Of course there is the obvious. Watching the videos—my babies were so much younger.  Caden was just a few months past his 2ndbirthday when he was diagnosed with autism.  I went from not knowing anyone with autism to having my own autism awareness campaign.  I used to worry that I wouldn’t remember the facts and statistics and now they are as familiar to me as my own name.  Aside from autism, though my beautiful blue-eyed son has gone from a sweet toddler to a precious kindergartener and my lovely daughter has matured from an elementary school child to a pre-teenager. 

Autism is multi-faceted; some aspects have become more manageable, some aspects are the same, and as Caden develops so do new symptoms. 

Communication remains a huge challenge for Caden.  At the time of his diagnosis he had lost all but two of his precious words, and we didn’t know if or when they would ever come back. Honestly we didn’t know if the words were still in there; it was really only after we moved from Kentucky and met Miss Jody, the most amazing speech therapist we’ve had in Caden’s “therapy career,” that we realized the words hadn’t left us, he simply was no longer able to share them.  Today his vocabulary never ceases to amaze me; he picks up and retains words in a remarkable fashion.  His challenge now though is articulation.  Along the way he also learned that others should understand and respond appropriately when you talk and he’s so sensitive that he’s realized his words don’t always “work.”  This awareness has created a new set of communication barriers that often have Caden grunting rather than risking others not understanding him.  It’s almost as though the closer we come to communication, the further away we are.

Another challenge for Caden when the video was made was with any type of interaction outside of me, his dad, or his beloved sister.  Besides the disappearing language, the other redflag for us was when Caden was 2 he didn’t know anyone outside of their context. So he had a wonderful babysitter with whom he stayed several hours a day 5 days a week while Dan and I taught. He adored her but had no clue who she was outside of the home she babysat him in or at least he refused to interact with her in other settings. He also was terrified of anyone even being in the same aisle as us in the grocery store.  He still gets overwhelmed if the store is really crowded or loud, but having Elf with him has given him the confidence to be curious about what’s around him.  Although it makes grocery shopping a painstakingly long process, it is also amazing to see him ask questions about everything on the shelves and for the most part ignore the people he would have a few years screamed out or about. 

Interactional difficulties were probably my biggest fear when we sent him to Headstart full time. His school was next to his sister’s school and more often than I should admit I would go to school to pick her up early just so I could go next door and spy.  Sometimes I’d watch Caden play on recess from my car window.  He was always by himself; he was quite content but never ever with any other children.  His classroom also had a one-way observation window that I could watch from and again he was always on task but never with any other children. I would leave Headstart with my heart in pieces and my eyes full of tears.  Reading about autism and knowing what to expect doesn’t alleviate or prevent the pain that comes with actually seeing autism in action. I would leave myself enough time to cry, wipe the tears, put some powder and a smile on and then pick my daughter up from school. While she was telling me about her day, we’d run over to Caden’s school and pick him up as well.  Although there are parts that are hard to recall about those days, I can say that his Headstart teacher, Miss Yolanda, was and is the reason that Caden loves school. I don’t know how she did it, but she left such a positive impression on him that he begs to go to school even on the weekends and during the summer. For that I will forever be grateful to her. 

Caden’s love of school traveled with us as we moved out of Kentucky.  Although I was once again nervous and worried, he fell in love with the Montessori learning environment. He has honestly flourished academically and Miss J, his teacher for the last 3 years, has helped him maintain his love for all things school. Reading and writing remain a huge challenge and as such we made the gut-wrenching decision for him to repeat Kindergarten again this year.  That decision hurt, but has proven to be exactly the right one for him.  He’s now working with first grade for his math classes and in the last month has read several dozen words.  He is also making shapes and telling us what letter they are out of anything he is playing with—today it was a slap bracelet, yesterday it was French toast. I wish I could describe how wonderful those letters and words sound coming out of his sweet mouth.

Even more satisfying though is listening to him talk about his friends; I never tire of hearing Sawyer this and Sawyer that.  See Sawyer is a real 6 year old little boy who excitedly waits for Caden to come to school—they talk, they work together, and they even plan play dates.  This last year we had several parents askus for play dates because their child was “always” talking favorably about Caden and wanted more time to play with him.  Although he doesn’t always understand how to play, the reality is he isn’t alone on the playground anymore and he isn’t sitting by himself in class.  That reality brings a whole new set of tears to my eyes.  That’s also the reality that gives me tremendous hope for Caden’s future. 

Some things haven’t changed. Caden still gets 10 minutes at night with his pacifier and his blankie still goes with us although we’ve added the amazing Elf as a comfort source. His sister still loves to play with him, his daddy still thinks he is funny, and I still think he has the most amazing beautiful blue eyes ever. Of course instead of just hoping and dreaming about a service dog, we now know that Elf truly is our hero and offers Caden a chance to “just be a kid.”