SOCIETY and DISABILITY: Raising A Son With Special Needs

I am consumed with Willie's latest quandary. Who will pay for his new program, Camphill Soltane? Is it our societies' responsibility? Is it ours, his parents? I don't have the luxury of pondering these issues because on July 16th, the School District's financial support ends. FOREVER!

As I navigate Willie's journey to true adulthood, I am forced to wonder about and advocate for societies' financial responsibility in his adult life. A wise man and mentor explained to me that our society made a moral commitment to care for those unable to care for themselves. He explained to me that in the 1970's, the "De- Institutionalization" of our Developmentally Disabled citizens began. Our society committed to supporting and absorbing the Disabled populations into our culture.  I embrace and understand this principle.  However, this idea that society somehow must care for or really pay for my disabled son's life, now that the school money is over, is super provocative.

My husband and I yearned for Willie 23 years ago. After he was born and suffered seizures and then meningitis, it never dawned on us that anyone else would be responsible for his well-being and care. This of course included how much money it costs to feed and house him, and the endless medical and therapy appointments he required. (There were numerous battles with the Insurance Company, but we payed our premiums to receive these services.) Of course, as Willie started the Public School System, we entrusted them with his medical, social, emotional, and academic care; as scary is that was. After we ran into deep trouble and were unable to create a program that best suited his needs, we pushed the School District to the limit of the Individuals With Disabilities Education Act (IDEA became a law in 1975). It was clearly the School District's responsibility to educate Willie. It was the Law! Sure he was still our kiddo, but the School had to provide him a fair and adequate education. This made sense and I fought for Willie with my heart and soul.

But now? And if I do come to accept that society has a commitment to care for those who cannot take care of themselves, why do I feel so unsure? Why do I have to advocate again for Willie's rights? And yet here I go again, discussing Willie's limitations, his disabilities, all of the painful parts that make him one of those people who cannot take care of himself. The parts of Willie that make it unsafe for him to stay alone. The parts of Willie that are emotionally volatile due to the Brain Damage. The parts of Willie that make it that he is unable to have and do a real job. The parts of Willie that are fraught with years of grief regarding the child he might have been. But no time for grief. I am in a new battle. But the ground under my feet is just not as firm as it used to be.    

Siblings: Raising A Son With Special Needs

All my kids were together at home a couple of weeks ago. Like any family, as kids grow-up and go off to college and such, this reunion is rare and usually takes planning. Like regular families, this gathering carries expectations and excitement from all persons. Like all families, the dynamics are rich and complex. For the Special Needs Family, it is even more complicated and plagued with what-ifs.

As I drove home with Willie for that weekend, he enthusiastically spoke about one of his younger brothers, the one who is away at college. Willie knew Teddy would be home that weekend and you could tell he was psyched. When the two of them came together that weekend, there was a calm, a knowing, and a joy you could pick up coming from both of them.

And probably like most families, they, brothers home for the weekend, didn't spend too much time together. But I will never know. As Willie was drawn to his routine on You Tube in the Computer Room, Teddy was hanging out with HIgh School friends. As Willie went on an adventure with Dad, Teddy remained asleep and then thoroughly engrossed on something on his computer screen. And I wondered all weekend, if Willie was without Special Needs, would they be inseparable on this rare reunion? Would Teddy look up to Willie as the older brother, instead of the other way around?  Would they share deep secrets and private conversations I would never know about? I wonder what their relationship would have been like.

The last day that our family of 6 was together, we went to the pool. Teddy never joins us at the pool. And Willie loves to swim. But this afternoon, everyone showed up at the pool. The brotherly/sisterly connection was strong and superseded special-needs. The companionship was fierce as they all sat together schmoozing, complaining about me, deciding what snack they would order from the snack-bar. I watched them out of the corner of my eye, my 4 children, all in one space, and smiled big. It was a rare and happy event. Special needs or not!

But I will always wonder, what if?

An Amazing Book for Siblings!