What Willie Taught Me: Raising A Son With Special Needs

Many years ago, my sweet, perfect 2 year old Willie went to a Gymboree Birthday Party and had a blast. Two days later, he developed an ear infection, not uncommon for 2 year olds. Did he pick up that germ at the Party? Probably. Why do I even wonder? Because 3 days later, he was in a Coma, diagnosed with Bacterial Meningitis.  That Bacteria made his ear throb and his body sick and somehow wandered into my toddler's otherwise healthy bloodstream. Unfortunately, that persistent Bacteria then found it's way into our son's cerebral spinal fluid and then up to his Brain. As we sat there for 7 endless days and long nights waiting for our Willie to either die or wake up, we thought a lot about the origin of that Bacteria. The Bacteria that wrecked our son's life.

My sister's son, Zack, came home from Israel yesterday. He was on a capstone group tour with his camp that got stranded in Israel for an extra week due to the war. I watched my sister sit there helpless and beyond worried for 7 days and nights waiting for that precious 16 year old son of hers to come home or.....The alternative was unspeakable but never far from our sealed lips and vivid thoughts. Many times over the past week I tried to help her by sharing my unique way of dealing with potential tragedy that Willie taught me.

What I learned while I waited for my son to live or die was you never know what's going to "get" your kids? Kill them, maim them, harm them, sicken them, disable them....Whatever evil you imagine. And I shared my knowledge from Willie with my sister. I told her she can and should worry about her son, Zack, stranded in Israel but most likely he will be fine. My lesson from Willie was to try to breathe through the fear and hang onto hope.  Willie taught me that I shouldn't try to predict and then worry about the unknown harm that may or may not come to him. That I may as well choose hope and non-worry. Either way, the outcome will be the same.

Throughout the years, I have chosen this unique path, mostly free of fear.  I don't worry like some parents.  I don't fret or stress over most things. I know I am completely helpless and unknowing. I know my imagination can not even conjure up the potential terror that could grasp one of my kids and take them down.  I just mindfully choose to live in the present, not afraid. Now if you met me you would laugh as I am not a particularly calm or zen-like person.  But deep down I am grounded and wise. These traits are taught to me loud and clear from Willie's terrible journey. Willie, as he suffered debilitating Brain Damage, gave me a gift.  For that I am forever grateful.

As we are all grateful that Zack is back in the USA, safe and sound from that particularly, scary war.

Sexuality and People With Disabilities: Raising A Son With Special Needs

My dear friend asked me weeks ago if I wanted to go to a workshop on Sexuality and People With Disabilities. Hmmm, I know I should do this as Willie's parent and hmmm, I guess so.  I acknowledged my reluctance but decided to do the "right" thing and attend.  Little did I know the Speaker, David Hingsburger, was clearly world renowned in the field but was also a gifted speaker. He only spoke for 2 1/2 hours, but his words moved me to tears, laughter, joy, sorrow, and total exhaustion.

(By the way, in the last 4 days, Willie has explored all sorts of new "Sexually" motivated topics on his new computer in the privacy of his room.  The history button on the computer is oh so revealing: who knew Willie found pregnant women sexy? I certainly wasn't used to this and couldn't wait for the workshop to guide me as Willie's Mom. )

David Higsburger spoke from his heart about Sexuality and People With Disabilities, from over 30 plus years as an expert in the field. His real and very funny stories left me on the edge of my seat waiting to hear what would happen next. His observations, epiphanies, and true wisdom gleaned over the past 30 years taught me more about Willie and his Sexuality than I had known before. Please visit David's blog to learn more about him and this crucial topic @ http://davehingsburger.blogspot.com/.

What David taught me today was what I'de intuitively known all these years but hadn't found the words. The grief I had to endure to celebrate and love my Willie had obliterated the Willie that had Sex, had a girlfriend, and got married.  I had to grieve the loss of my normal son many years ago, and unfortunately am called to do so again and again. That Willie that was going to grow up and be a fully Sexual Being was gone.

Mr. Hingsburger challenged me today to cherish and celebrate my adult son who is Sexual. Willie yearns for a girlfriend. He obviously has a Sexual Identity that prefers pregnant women. It's all right there for me to see. I just didn't want to. I couldn't. That Willie was buried.  Now I will slowly unearth that version of Willie. It is painful as I cannot control whether he gets a girlfriend. But now I know I have no choice. I must encourage and acknowledge the Willie that is an "Individual With Disabilities With a Sexual Identity." WOE!

Thank you David Hingsburger!

Willie is HOME: Raising A Son With Special Needs

I wanted to write about Willie last night so badly. He just got home for his 6 week Summer Vacation.

I wanted to explain the meaning and heaviness of 5 years worth of his stuff on our Guest Bed. I wanted to talk about the horror of going to Bamboo, our Do-It-Yourself Yogurt Shop. I needed to write about how happy he was when he arrived home for Summer Vacation with no siblings home. I had to share the joy and beauty of his last Ceremony at The Camphill Special School. I needed to explain that the reason Willie bites his nails so brutally is because he just likes them smooth; no sharp edges allowed. (He finally told this to me after 21 years of constant biting.)

But Willie was on the Computer. Yes, we had just given him his first Macintosh laptop computer of his very own. (Not loud enough, he now tells me, for his YouTube surfing.) Sure there was an iPad around. But NO, Willie was on THIS computer with THIS keyboard where I write THIS BLOG and he WASN'T budging.

And things were already so tense and tricky that he wasn't moving and I certainly wasn't asking him to move. So as I was bursting to blog about Willie, I was frozen off the computer by him. The very episode at that yogurt store that I yearned to speak of was stuck in my head. It haunted me, paralyzed me, and kept me from doing anything at all for several hours until I went to sleep.

But today is better. Willie has processed the Yogurt incident and put it behind him. I was dramatically reminded to pick my battles very, very carefully.  (Yogurt is not worth it, ever!) Willie is definitely home and now the computer IS free.

Selected: Raising A Son With Special Needs

Today I opened a letter addressed to my son, who was 18 last October. It was from The Selective Service informing him that he needed to register with them. The first sentence said: "Our records indicate that you are a man..."

Willie never got that letter. Until today, I wasn't even aware that 18 year old boys were still required to register with The Selective Service. And why is it called the Selective Service anyway?

Sure, the letter took my breath away for my son who is required to make himself eligible to go to war, if one should arise. But after that feeling, my next reaction was all about Willie.

Willie receives Disability from the Federal Government and I had to work very hard to establish this for him. But I don't walk around thinking much about how our government views Willie. And then smack, there it was: HE IS DISABLED, exempt from registering with The Selective Service, and quite unable to fight in a war. It was a knife to the heart visceral reaction. A slap in the face. As if a loud megaphone was resounding: WILLIE IS DISABLED, NOT SELECTED, INFERIOR....

And another thought I have is that this other son of mine, 3 years younger than Willie, is referred to as a man in this letter from The Selective Service. And I know as well as other Mamas out there, that my 18 year-old, although 6 feet tall, is definitely not a man yet. But what about Willie, who is turning 22 in 4 months. Is he a man?  Not according to The Selective Service. According to them, his is another category, DISABLED, and not truly a man.

My reaction of course is tainted and weighed down by years of navigating this non-disabled world with Willie. Day after day I have had to advocate for him and explain him to the world as a capable, smart, funny but limited child. And now as he ages out of the School System in 13 days, he is not a child anymore. But neither is he a man.

I am left feeling grateful that we are not in wartime for my 18 year-old boy-man. And left feeling uneasy for my Willie, as he transitions from his School-Age Program to an Adult one. I am proud of Willie as he evolves into a wonderful, kind, competent, sensitive, loving and disabled 21 year-old. Moreover the Government will care for and protect him, not the other way around. So why does that knife wound sting so?