Monday, September 29, 2014

It's Just A Computer: Raising A Son With Special Needs

We bought Willie his very own laptop for his graduation from 5 wonderful years at The Camphill Special School.  It made sense as Willie loves browsing on the internet about his intense interests. It made even more sense as his school didn't allow use of electronics and Soltane, Willie's new program, does.

Who knew it would come to encompass Willie's struggles to a tee? You see, Willie cannot and will not turn off his computer at night and thus is not sleeping.  Because individual rights are a priority at Soltane, Willie is not losing his rights to his computer.  Recently, after a team meeting, the folks at Soltane decided to turn off the House internet connection at 10 PM.  I thought that was brilliant and am not sure how Willie has made sense of this.  He still is super tired, indicating he still is resisting consistent sleep.

My husband and myself have almost decided that after Willie visits next weekend, we will keep his computer at home for a while. I don't want to do this as I would prefer Willie really gain enough self-regulation to give his body the sleep it needs. But I worry too much about Willie's overall well-being to wait him out.  If he doesn't sleep enough, his mood is particularly impaired.  If Willie is too tired, he will be more susceptible to getting sick.  And of course, Willie tends to have seizures when he is sick.

This computer issue holds much meaning.  Will Willie ever be able to regulate his basic need for sleep with his very real rights and desires for other activities? As Willie transitions to an adult community whose main emphasis is on teaching self-advocacy skills, the computer gains even more significance.  I don't want to treat Willie like a child and take his things away. I can tell I will learn much from Soltane about Willie's emergence as a young adult. But for now, I just want my son to sleep.

After all it's just a computer! But I know it's one of many future struggles we will face as Willie moves closer to true adulthood.


Thursday, September 18, 2014

Imaginary Role-Models: Raising A Son With Special Needs

I've said it before and I'll say it again: Willie uses make-pretend role impersonation to deal with his Special Needs.  I get it. It all makes perfect sense. It started when he was little and became fascinated and obsessed with Darth Vader.  Willie's 8 year-old self was grappling with simple good and evil themes. By then, Willie had begun having tantrums.  During the tantrums, he would scream terrible things.  After he calmed down, Willie would be filled with remorse.  I know he was drawn to Darth Vader, as he also said and did terrible things.  Darth Vader used to be good but turned bad.  He became a role-model of sorts.

Through the years, Willie has continued to take on other personas:  Darth Sidious in Harry Potter, the Phantom from Phantom of the Opera, Batman, The Joker, and even Slash from Guns and Roses. Willie has continued to have self-regulation issues, always feeling terrible about himself after regaining control.  These fantasies of becoming these "heroes" help Willie to reconcile the "good" and "bad" sides of himself.

Up until last night, I instantly played right along.  We have our roles and I am usually Helen Keller,who randomly runs into one of Willie's heroes.  We always talk about deep and meaningful concerns and themes. Willie is transparent, getting right to the heart of the issue. There is usually a problem, as his character has done something bad, or encountered someone doing something bad.  Willie always wants my help, forgiveness, or guidance.  It all feels therapeutically positive.  I get what Willie is trying to do, even if he doesn't.

But last night, the rules changed and I wouldn't play along. Willie decided to be Hannibal Lecter from The Silence of the Lambs.  First of all, I don't know how Willie even knows about that evil character, as he has never seen the movie. But Willie has an awesome grasp on popular culture, so I am not surprised he found out about Hannibal. But I am surprised that he adopted him as one of his characters.  I will admit I know little about Hannibal, except that he is a serial killer. So I guess I better google him.  But in the meantime, I am disturbed that Willie would adopt him into his psychological role-playing.

The only thing I can imagine is that Willie feels disappointed and mad at himself, as his transition to his new program has been a tough one. Perhaps Willie's own anger and frustration feel so out of control that he imagines himself to be as evil as Hannibal.  Either way, I will not play that game.  Dig deep Willie and find another role-model. I will wait for you.

Wednesday, September 10, 2014

That YEARNING: Raising A Son With Special Needs


I MISS WILLIE!

I haven't written this Blog in a while or done much besides meet the basic needs of my family. That's how difficult it was to deal with Willie these past several weeks while he awaited the BIG CHANGE. Meaning Willie was moving to a new and wonderful Residential Program called Camphill Soltane. His behavior regressed so much in these last few weeks that I didn't even pick the bath and sleep battles, as I knew I would lose. I felt both lucky and blessed that Willie was able to walk out the door on that Saturday, August 30th, to get in the car to go to Soltane. (He was in fact clean, having bathed!)

Then there was the 4 hour overlap while we attended a family meeting with Willie and the other residents, ate a group lunch together, unpacked him into his own room, and met with his Residential Manager, aka Laura. The feeling in the room during the meeting was hard to describe.  Sitting with families of young adults who share the same sorrows, tribulations, and joys was a feeling you could almost tangibly hold in your hands. The smiles and knowing glances shared around that circle in the beautiful Whitsun Hall lent me strength, when I felt weak. Watching Willie sit with 4 other young adults at lunch, only 1 whom he had known before, chatting as if they had all seen each yesterday, gave me courage where I had only fear. Setting Willie up in his first private room in 5 years reminded me of sending my College Sophomore off earlier in the week.  And finally sitting in the calm, peaceful, and very beautiful Emerson House, sharing emergency seizure directions with Laura among other things, forced me to trust.  Her eyes, fairy-like and belonging to an old-soul, gave me a connection I could rely on.

And now I am back in my life without Willie.  He is doing well.  It's not perfect at all. There are plenty of wrinkles to iron out. People who need to get to know him. Strategies that need to be learned. His comfort and trust have to be earned and expereinced. So much growth ahead of him. Again I feel blessed and lucky to have found Willie a perfect home for the next 7 years.

But there there's this YEARNING.  It always comes.  It doesn't make sense as Willie was so draining to be around these past few weeks. I wouldn't want him here: there's no purpose or structure. He needs to be at Soltane to grow, learn, gain confidence, develop, become independent, and mature. Yet I yearn for him.

And every night I go in his room and close my eyes and just smell him.  It is just plain comforting. I wrap my yearning in this wonderful, musky smell and then I feel better.