Guardian (Angels): Raising A Son With Special Needs

One of the perks of being Willie's Mommy are all the wonderful people I get to meet.  Through the years, a handful of these teachers, therapists, mentors, and coaches have become my good friends. These are people who see the true essence of Willie.  They cannot get enough of him.  They "get" him. They learn from him and in turn teach him.  These special folks help me to remember and see the pure spirit of my Willie.  They remind me that he is special in a way that has nothing to do with Special Needs.  For Willie is an old soul.  He touches people's hearts.  He has an ability to deeply connect with others with few words.  Through Willie's struggles and victories, others are drawn to the lessons he teaches.  One of perseverance, humor, life's universal struggles, compensations, and love.

The other day, I was lucky enough to have lunch with one of these fabulous ladies from Willie's life.  She worked intimately with Willie every day for three years.  She taught Willie how to be on a team, how to be silent, how to chop safely, and how to be a true friend.  This mentor and coach loved Willie so completely that she asked me if she could go on a Sumer Vacation and journey with him. And they did. Willie gave back to her too, clearly.  Their connection illustrated Willie's abilities to work and to bond,  and I am still mourning it's end.

So at coffee, we were talking about Willie's future.  All of a sudden, she blurted out "I will be Willie's Guardian."  I laughed and said that wasn't necessary as I was Willie's Power Of Attorney.  So then she smiled this beautiful and magical smile and said "then I will be his Guardian Angel."

And that was it for me, not being a cryer, my eyes swelled with tears. And I remembered that of course she already was Willie's Guardian Angel.  For Willie has and always will attract a few very special people that are intuitively drawn to him and watch over him. As he lay dying for that week when he was in his coma, I believe he made a deal with that mysterious upper world. And somehow, he was granted his life back, with the support and love of a select few.  Those are his Guardian Angels.

I am lucky enough to know them all. Thanks Willie.

Little Bits of Light: Raising A Son With Special Needs

"Who am I kidding? I thought. Why did I even think about writing this post? In my world you only have to wait a few hours and the sky will turn cloudy again. I guess that's why we need to document and savour the little bits of light, whenever they come."

The above is an excerpt from Louise Kinross' post from BLOOM - 
Parenting Kids With Disabilities, a Special Needs Blog.  https://mail.google.com/mail/u/0/#inbox/1493756f2acc81d2.

I love this blog and read it every day.  This particular entry touched me due to it's brutal honesty.  My blog seems dark and I struggle with the extent of my public negativity. But Louse Kinross was able to illustrate both the happiness and the hardship of raising a child with Special Needs.  I love how she explains both ends of the feelings spectrum as 2 truths you are forced to juggle and embrace as a Special Needs parent.  

Lately, as Willie has been struggling, I too have been feeling low, despair, and defeat. I seem to have lost the ability to remember and hold-on to all of Willie's strengths, abilities, and gifts. I feel guilty about this. Yet I feel stuck. All I see is grey.

Louise's mention of those "little bits of light" pierced my grief.  Those words captured my attention. She helped me to remember that not all days with Willie are so gloomy. That some days, I will see bright yellow, powder blue, and deep red. Some days, I do revel in the lessons Willie teaches me.  Some days, like yesterday, I received a report that Willie is improving.  That the hug he gave a co-worker yesterday made that co-worker's year. That Willie will not always be so depressed, frustrated, and anxious.  And that, as Louise says, I need to "savour" the little bits of light, for they are fleeting, but seem to always return.

So today, when I think about and ponder Willie, as I do endlessly, there is a rainbow of colors amidst words like adjusting, resilient, and loving all swirling around in my brain. I hug, embrace, and taste those "little bits of light" as I know they are delicate and temporary. 

Rehab: Raising A Son With Special Needs

We took Willie's computer away.  He is in withdraw.  Literally! He calls me now: he never initiated calls before. YAY! We talk endlessly about his computer. Willie asks me when he is getting his computer back. Over and over again.  The first call came 2 days into his withdraw. Willie said: " I am doing everything you said. Going to classes, sleeping, taking showers...now when can I have my computer back?" (It had been TWO days!) I explained to Willie, calmly and clearly, that he was doing great but he needed to keep this up and we would consider his request after some time.  His immediate response was: "Ya right, 3 days or 3 years...." This comment both showed Willie's inability to process and understand time as well as his extreme thinking: all or nothing!

The definition of rehab is "the process of helping someone (such as an injured patient or drug user) to become healthy again." Synonyms of rehab include healing, mending, and recovery.  The idea that Willie is in rehab now that we have taken his computer away is not far from the truth.  But this is rehab for his broken brain more than an addiction.  For most 21 year olds can regulate their computer use.  My 21 year old cannot as his brain is damaged.  

The verdict is still out whether Willie can learn to manage his computer, even with support. There is no real recovery from Willie's Brain Injury.  Willie's rehab has been centered around helping Willie to reach his potential even with his brain damage. We have helped him learn compensation strategies, given him accommodations for his deficits, and put a safety net in place when things have fallen through "the brain cracks." Willie's whole life has been a type of rehab really. And truth be told, there has been enormous growth, healing, and improvement.  

I hope I can answer one of Willie's phone calls one day with: "You can have your computer back." 

THE INTERVENTION: Raising A Son With Special Needs

I told Willie yesterday that I was keeping his computer at home; that he could no longer have it with him at Soltane.  He flipped out. We, his Counselor, His Outcomes Facilitator, Willie, and myself, were in his counselor's small but very cozy and safe office.  It was planned that I would deliver the news. Planned meaning everyone knew but Willie.  I ambushed him. It was an intervention of sorts. He fought me like a true warrior. That office became smaller and smaller as Willie spiraled through his typical pattern.  First primitive anger including yelling and swearing. Next lashing out at me.  Yes, he squeezed my finger so hard that I thought he would break it.  Then the anger was directed towards himself, as he bit his own hand and drew blood.  Finally, the tears.

I don't even know how long that part of the hour took. Could be 5 minutes or 20.  It all was very intense, draining, and scary.  In the end, Willie allowed me to hold him, right there in that tiny room, in front of 2 people who clearly love and care for him.  I can only imagine how exhausted Willie felt/feels from the encounter, as I am still reeling.

An hour later, after the intense emotions had passed, Willie was full of self-recriminations, another typical pattern for him.  As always, I told him we had moved on and accepted his apology and now it was his turn to forgive himself.  I know for sure his self-loathing is still there as "forgiveness-of-self " is a challenge Willie has yet to meet.

The part that surprised me is that Willie, once calm, seemed peaceful with our decision to take his computer away.  What I mean by this, is he did not argue or bully me into discussing the issue endlessly, as his usual pattern.  I don't know for sure, but I guess and certainly hope that Willie feels relieved and rescued.  You see the computer has become an addiction. It is interfering with his daily living.  It is keeping him from sleeping and eating properly, even bathing.

Was our intervention successful? I don't know yet.  On Sunday, as he leaves after a hopefully awesome weekend at home, we will keep his computer and he will go back to Soltane without it. Will Willie join the community more? Will he sleep? Will he venture out of his room more as the allure of YouTube is gone? Time will tell. But we took the first step. PHEW!

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.

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.

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.