My Sons Greatest Handicap

Someone in our support group had mentioned that the greatest disability our children had was: they didn’t “look handicapped”. With some disabilities it is visible and with others once a child moves or behaves a certain way it becomes visible. In a lot of cases, with my child, it’s not always apparent that he has a disability until you talk to him or if you watch him for an extended period of time. The other person will get this “funny feeling” that something is just not right.
I either leave to avoid embarrassment or try to explain why they are experiencing this strange sensation. A lot of times there is no quick explanation. I suppose this happens with other disabilities but sometimes there is a handy quick label to supply for an explanation. That just isn’t so with this type of disability.
It actually doesn’t matter what the disability is. Because whether or not it is visible or there is an explanation I am brought back full circle to the idea of who really is the disabled person here.
My child is usually not aware that he is receiving this type of reaction and quite often he doesn’t really care. So who is the disabled person? Why, me, of course! I am the one who feels compelled to explain why my child is acting the way he is. I am the one who feel compelled to leave because either I have to give the long version of his disability or give the short one and most definitely risk misunderstanding. That’s a whole other story.
In the first case I am disabled by my ability to succinctly explain what is different. I am disabled by the fact I feel compelled to explain my child’s behavior. My mind races for a simple way. I try to gauge how understanding this person is and how much I can tell them so they understand but don’t jump to conclusions.
If I run away I am disabled by my compulsion to hide my child, to protect him. I am afraid of their judgment and opinions, which really won’t make a hoot of difference to my child.
In truth, I am under no obligation to do either of these things but because I am disabled I feel driven to do this. But I have a lot of experience with both of these situations. I have a lot of experience with people who stare, glare at my inability to “control” my child so he meets their standards of how a child his age should act and talk. I have a lot of experience using different speeches to explain why he does what he does. Not many of them have been successful.
But that was awhile ago. I’m not cured of this disability but I’ve learned a new way to handle these situations and I learned from the best. I choose not to be too concerned by what my child is saying or doing. I choose to focus on the moment and deal with what I find inappropriate behavior, actions or verbal outbursts. If nothing too bad is happening I often will look at people’s reactions but quietly I say to myself, “It’s not me or my son who has the disability here. They do. And the sad thing is they don’t even know it.”

The Michael Jackson of Socks

I was washing my son’s clothes the other day when I came across what he had done to his socks. He’s in his 20’s now but sensory integration – how things feel when they touch his body in any way – has always been a part of his disability. He had neatly cut off all the corners of the toes.
“Honestly!” I sometimes wondered, “Does he not think I would notice this!?”
As I was chiding myself for not consulting him when I bought them, a smile crept onto my face.
An amusing memory, or a Magic Chuckle (see story about what a Magic Chuckle is) that showcased this very issue, popped into my head. At the time I did not know this was even called a “sensory integration issue”. I was just annoyed at how often I had to redress my child every single day.
Remember how Michael Jackson used to go around just wearing one glove? That is how my son got nominated for “The Michael Jackson of Socks”.
Moms of the world can attest to the energy and time that goes into dressing a child. In my case multiply this by five. Sometimes I hated to even bother. In fact if we weren’t going anywhere I wouldn’t and if we were….well you can bet I did it 15 minutes before we left and I could pin him down in his car seat. This still didn’t deter him from removing socks and shoes so sometimes I wouldn’t even put those on unless it was cold out.
My routine was solid. I would plan what I was going to do and dress myself first and then buttoned, zipped, pinned, pulled and tied my son into his. My hand was poised with the door half-opened when the phone rang. Before I could grab my son he was off, out the door. As I answered hello he was tottering down the steps. I wasn’t too worried. We lived on a farm with miles and miles of flat land. If he took off I would be able to see his head bobbling through a field.
I hung up the phone after five LONG minutes and flung the screen door open as I walked through it. I wouldn’t have to look far for my first clue: a pair of tiny Velcro sneakers on the steps. As I bent over to pick them up, for future redressing, I noticed his socks piled up 20 feet away. And so it began. I began to understand how Hansel and Gretel felt following a trail of bread crumbs.
I followed the trail to the corner of the garage and sighed. Yesterday my other two children had loosed several gallons of water from the garden hose into the pile of dirt behind the garage. It had turned the place into a massive area of quicksand. At least that is what they had excitedly called it. After playing in it yesterday they were quite leery of ever going back to it. I had had to drag my sucked down feet through it yesterday to retrieve two sobbing children. They’d gotten mired up to their knees. I could still hear the sucking sounds as I pulled little bare legs and feet from the unrelenting mud.
As I turned the corner I expected more of the same. What I encountered was a cooing young child in his glory. He was stark naked, up to his thighs in mud. He was just starting to wobble as his bottom smacked into the surface of this lovely, warmed by the sun, smooth, slippery mud that would caress his rosy body. It took an hour to clean him off.
I decided that it was time to “cure” him of this. It was too embarrassing having him do this in public. It took a month but my diligence paid off. The only “habit” I couldn’t crack was the removal of one sock. Yes he only took off one.
It was at this time Michael Jackson started a mini fad of wearing only one glove. My eldest son insisted his brother was just copying Michael and dubbed him: “The Michael Jackson of Socks”.
I personally believe it was his compromise at having to give up the joy of removing all his clothes.

The First Time

I remember, so clearly, the day I was told my child had a disability. It was an explosion of emotions. Some emotions were conflicting which didn’t make acceptance occur in a smooth motion.
I was so terribly upset that my child should be singled out for this rare disorder. By the time I got home, from the hospital, I was shocked to realize that I was really upset that I had been singled out. My child would wake up still the same the next day but I never would but how was I going to cope with this. It was the most selfish thing I ever felt.
Then I was angry – at just about everything. I was angry at how the Doctor had “coldly” informed us. I was upset that the only thing my ex-husband was concerned about was our child’s ability to have his own children. I was also angry that before we were even out the door he was looking for someone to blame for this and it was me. Neither of which were his fault because he didn’t realize he was disabled too.
I was angry that I would have to deal with, yet another problem, when I still wasn’t over the last one. I was angry it was my child and not someone else’s. Silly me, since there are millions of “someone else’s child” out in the world.
I was relieved. Man, how relieved I was and ashamed at my relief. At last I knew what was wrong. My son’s disability had a name and I had something to start on. I was relieved that it would give me direction towards what to do next and that “next” was to find out as much as possible about this disability.
I felt vindicated that after all the years of saying, “Something’s not right here.” I was right. Not an “I told you so” – right, but more like, “Hey my intuition was heading me in the right direction after all.” I knew I had been okay in trusting my instincts, as a mother. Previously I found, that the more things that went wrong with my child, the more I was apt to blame myself for maybe something I had done.
I was excited about the challenge of finally making headway to learn what I needed to help my child. I had a direction to march off to and it would only mean more help for me and my child. At the time, I just didn’t realize how much help it would mean for me.
After feeling all these feelings I then realized how self-centered all these emotions had been. This was the first time I realized, as a parent, how disabled I was. I would have to learn parenting all over again. My expectations for my child had to completely shift and I had to re-examine my own life expectations. I was no longer the part-time guardian of my child till he became of age. I was probably now going to be the life-time guardian of my child.
This thought brought on a whole new spate of feelings, which I promptly shut down. I wasn’t ready to look at this aspect of my disability yet. Right now my child was a child and he needed me to be strong, focused and to most certainly dig out my sense of humor from my toolbox. I had a feeling that for the next several years I was going to need it.

Confessions of a "Handicapped" Parent

It came to me in a flash! I was trying to think of a name for this blog. I wanted it to be for parents of disabled children and I wanted it to be short. If I just said "handicapped parents", then someone might think it was for a parent with a disability.
Then it dawned on me... okay it hit me like a hammer. This blog was never about my own child, who is disabled. This blog and story has always been about me. It was ME who was truly disabled and my stories are a journey of how I learned to cope with, deal with, grow and cure myself of this disability.
Children who are developmentally or physically disabled instinctivley and inherently KNOW what they are capable of. It us, the parents, not our children who have the disability.
As parents, we have been bombarded all our life about what a parent is and should be. There is the media, our parents and mentors and role models all throwing images and ideas on how to parent but NO ONE ever tells you how to be a parent to a child with a disability.
When our child is born we too are born. We are born blind to what we can do, say or be. We are blind to what our child is capable of.
We are deaf to our own inspiration and we are emotionally crippled by our constant questioning of: why me?
We are also born again mute. We speak about what we need and what our child needs and often the people and organizations around us cannot hear us.
We are paralyzed with anger and resentment because no one understands what it is like and we often become exhausted trying to make a case to people who can help us.
This this blog is not about your child or mine. There are millions of disabilities and diagnostic categories our children will fit into. But there is only one place for a parent who's child is born with or a child who develops a medical issue. This blog is for you.
This blog is all about offering a course of action, through sharing about the journey to recover from my "birth" as disabled parent to an adapted parent.