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!