August 23, 2019

Independence, Re-defined states that the word “independence” can be defined as “freedom from the control, influence, support, aid, or the like, of others.”

As a parent of a 17 year-old with significant developmental disabilities, the word “independent” feels very elusive. With our next IEP (Individual Education Plan) meeting, we will begin to plan his “transition” out of high school and are getting ready to fill out the Limited Conservatorship paperwork needed for us to retain legal responsibility when he turns 18. How will our son Danny ever be independent when he needs help with almost every aspect of daily living? Will he be able to live safely and happily without us, even in a supportive and nurturing residential arrangement?

When he was younger, we had high hopes that all that was needed to ensure his eventual independence was one more therapy, perhaps a different, novel approach to his intellectual and physical challenges. Conventional physical and occupational therapy, Floor Time, Audio therapy, hippotherapy (that involves a horse, not a hippopotamus), you name it. We tried them all, and while many of the therapies and strategies were helpful, none of them were able to help him “catch up” to his peers. After a while, we stopped trying to run a race that was impossible to win, and learned to measure his progress solely against his own yardstick.

Just this year, Danny has shown remarkable progress in many areas, most profoundly in speech. When his space heater stopped working last night, he loudly announced, “I cold, I cold”! Upon hearing a song he likes, he demands that we add it to his “Nano” (Ipod), and as soon we hears about an upcoming party or simcha, he begins to plan out what he wants to do at the upcoming event “dance” accompanied by his own little dance move, or “eat cake”.

Last Friday, we stopped off for a snack at Starbucks after his swimming lesson. I knew he was tired, so I gave him the choice of going in or staying in the car. Up till now, he would just motion with his hands to stay in the car, or maybe say, “car”. He turned to me, and with full teenage attitude said very clearly, “Stay in the car”.

Independence Day is coming.