With Danny turning 18 in fall, I have to admit that there are many times when I'm feeling pretty burned out. The daily grind of raising a child with CP who has significant motor and intellectual disabilities takes it toll over the years. There's his morning routine, with toileting, eating his favorite food, toast, and drinking a Boost, followed by three different medications (all of which are ground together, sprinkled with sugar and added to yogurt) followed by a "chaser" of apple juice. Evening is the same, only with a final "goodnight" assisted pee pee, and then the evening medications, which carry even more of a punch. In between, there's a lot of Pixar videos, favorite music on the ipod and coaxing of words, sentences, ideas. I feel like I'm trapped in a loop, kind of like the Bill Murray character in "Groundhog Day, condemned to relive the same day over and over again until I get it right.
Since his initial diagnosis at 13 months with "global developmental delays" there were some windows of time when it looked like he might "catch up" if only we did enough physical, occupational and speech therapy, but the older he got, and the more he trailed behind his peers. We spent hours on the growing world wide web, searching for new ideas and solutions. We took Danny to many specialists, therapy programs of all stripes and types and assessments, trying to figure out what the "it" was that would help him be more like other typical boys. Finally, at around 9 years old, it was actually a relief to acknowledge that Danny was firmly on a very different path than other kids, and to accept that as our reality.
We still pay for a private speech therapist, and take him swimming twice a week, but beyond that, we are focusing more on his social/emotional growth, and encouraging friendships and fun. We are also working on spelling, knowing that is key to his communication on the computer or ipad, but it's hard to know if all the time spent on computer software, flashcards and reading to him makes any difference. The other night, I took out his magnetic letters and put together a few simple words, "cat", "dog" and "toy". Without any prompting, he nailed each word. I felt rejuvenated.
Michelle is a parent and professional non-profit manager. She blogs at www.jewishjournal.com/jews_and_special_needs