Monday, August 3, 2015

The puzzle piece is not just a symbol of the individual with autism

Most people know that the puzzle piece is the global symbol for autism. It represents the complexities and nuances of autism spectrum disorder and the diversity of all the people living with the disorder (http://www.autism-society.org/about-the-autism-society/history/autism-awareness-ribbon/). But, in my opinion, it represents all the long hours parents and caregivers put in day in and day out, trying different therapies and interventions for their child until they find one that works. For me, the puzzle piece has always represented the challenge of finding methods that work best for each of my children. And we get closer everyday to completing our puzzle. That doesn't mean I am trying to "cure" my children or that I expect to someday not have to use the word "autism". It simply means that each day we get closer to finding interventions that allow them to reach their full potential, whatever that may be. That is what will complete their puzzle.

For example, when my son had regressed and lost all of his speech at 18 months, the puzzle was teaching him how to communicate again. The first puzzle piece was using PECS symbols to make requests. The second puzzle piece was learning how to sign (for me and him). The third puzzle piece was his "first" word at 2 years old (even though we'd already been through that at 14 months old). We slowly kept putting puzzle pieces together until now, at 3 1/2 years old, he speaks in full sentences with very little delay, if any. 

Another puzzle for Kai was social skills. I enrolled him in PLAY Project at 2 years old. When he was first evaluated by early intervention, he didn't make eye contact or respond to his name. He rarely played with objects as they were intended (i.e., he would walk around picking toys up and throw them behind his head over and over). Now, a year and a half later, thanks to PLAY Project, he is fully engaged nearly 100% of the time with whomever he is playing. He is the most social child on the playground and will walk up and say hi to every child he meets. His consultant and I, using the PLAY techniques, slowly put the pieces together for Kai and taught him how to play and socialize. Of course, he did all the manual labor. :)

My daughter's puzzles are a little different from her brother's and a lot more complex. Part of the reason is because she is very intelligent, so she thinks she already has it all figured out. At the time of her evaluation at 3 1/2 years old, she exhibited severe echolalia and delayed echolalia. She has overcome the echolalia for the most part (first puzzle piece), but the delayed echolalia and scripting severely interferes with her ability to strengthen her social and social communication skills. We are still working on that second puzzle piece. I began ordering private speech therapy for her this past April, once a week so she wouldn't regress over summer break. It (among other things) is killing me financially, but I knew that she needed that piece of the puzzle. Just in these short three months, she has made so much progress. I may regret spending money on a lot of things in my life, but therapy for my kids will NEVER be one of them. It is priceless.

Karys also receives equine therapy (puzzle piece #3). She doesn't need it for the physical reason that so many do. Instead, we use it to work on her communication and social skills. She identifies better with animals than humans in a lot of ways, so she is more calm and open around animals, which allows her to learn better. For this reason, I also found myself adopting two cats from the Humane Society earlier this year. (For the record, I always swore I would never have cats. This single-handedly proves how far I am willing to go for my children.)

I am in the process of enrolling Karys in PLAY Project, like her brother. I am excited to see the progress she will make. I have a feeling this will be her fourth puzzle piece.

Karys's other puzzle is her emotion regulation. It interferes with a lot of things in her life. I think part of it is triggered by her auditory sensitivity, but I think there are also some underlying anger/mood issues as well, which we will probably not know a lot about for a few more years. 

One of the trickiest parts of autism is all the underlying sensory and emotional issues. Therapy isn't just about teaching them to talk, walk or socialize; it's figuring out the WHY behind those deficits. We are still trying to put that puzzle together for Karys, and maybe always will be. I'm okay with that (as if I have a choice), as long as we are making progress.  We might only find one puzzle piece per year, but eventually, that puzzle will be complete. Even if we never find all the pieces.





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