Saturday, October 22, 2016

Friendships: Adults with Special Needs: Raising A Son With Special Needs

If you are like most parents of those with Special Needs, friendships are a hot topic, a source of pain, an overarching goal, a moving target, the Million Dollar Question. Instead of describing Willie's long history of friendships, let me launch into a rather uplifting story of such.

Willie and Will hated each other when they first met, back when they were 16 and 17, respectively. Who knows why. But they had to live in the same house, which was trouble. Willie's siblings, after meeting this infamous Will, were so impressed that there was actually another person who had Special Needs who was like their brother.  It's true, they were both handsome, well spoken, engaging, interested/obsessed with many topics,with unique senses of fashion,but they still butted heads.

Flash forward 3 years, and there these 2 Williams were again, finding themselves as roommates in the Farmhouse. We all doubted yet held our breathes with hope. It was almost magic.  For somehow in the quiet wee hours of the morning, when they were supposed to be asleep, these 2 wonderful young men, wove each other into one another's hearts. The amazing camaraderie that evolved from then on would take your breath away. Will, an artist, would continually create objects of art for Willie.  And Willie, with his gift of language, would support and validate Will.  Willie truly saw Will. It was every mother's dream come true.

And then Will had to move away.  His funding was up as he turned 21, and could no longer be at The Camphill Special School. The Williams were sad, but of course you could not see their sorrow, as both of the ways these young men showed emotion was irregular. But the boxes started coming from Will to Willie through the mail.  Trinkets he found, those he created, sent to Willie over the miles. Willie, unable to reciprocate in kind, said very little. But he would talk about Will at times with a longing and melancholy in his voice. They spoke on the phone sometimes too and that was quite a conversation to observe.  Both of them trying so hard to connect, trying hard to find that place of intimacy once again.

Recently, the idea of a visit out to see Will in California has blossomed.  Both boys, in their ways, are super excited. Now it's up to us parents to facilitate such a reunion. Not so easy, as Willie can't just jump on a plane and fly out to the West Coast. And so even though Willie is almost 24, I am beginning another journey advocating to help 2 good friends see each other again. For friendships between Special Needs Adults takes a director. Out come my batons!!

Sunday, October 16, 2016

Food and Letting Your Child Grow Up: Raising A Son with Special Needs

When I called Willie this afternoon, Daniel said he was out to eat with Miles. As I have discussed in earlier posts, Willie and food are a hot issue. Willie loves to eat. He especially loves to go out to eat. This can be a contentious issue, as going out to eat presents more unhealthy food choices then eating at home. When Willie is home, I try to limit how much he gets food, either to-go or at a restaurant. If Willie had his druthers, he would eat all 3 meals out every day. And subsequently weigh 300 pounds, at least that is my fear.

Willie has recently moved to a new program where his rights as an individual are especially valued and emphasized. Going out to eat at a restaurant appears to be a more available option then in the past places he has lived.

A good friend of mine who works with Disabled adults and I chatted today about this very issue, as we hiked along the trail this beautiful Fall morning. She explained that one of the Disabled individuals she supports had a major breakdown when she wanted to grab a burger for dinner from the restaurant down the street, but was denied that right. They were serving soup at her home that evening. My friend suggested that she should have been allowed to get that burger, as after all, she is 45 years old, Disabled or not. This scenario developed into a crises, as her Residential Manager dug her heels in and pushed this woman to the edge.

This story made me truly ponder Willie and his choices and rights. I want to control Willie's food intake and preferences, as he tends to make poor ones. But truth is, he is almost 24 years old. And would I actually tell his new program that he is eating out too much? Will I try to micro-manage Willie's caloric intake from 90 miles away? Or will I hear my friend's message and let him design his own world without my very controlling instincts? Will I realize that Willie is an adult and gets to create his own life, which includes his desire to frequently eat out? I guess that is truly my only option, to let go and let him grow up as he wishes. Disabled or not, Willie is an adult now. I must let him grow, evolve, and initiate his own routines. And although it goes against all my inclinations to allow Willie to make his own choices, especially when it comes to food, I need to bud out. This is every parents' task as their children become adults. Disabled or not.