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 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.

A Gift From God

Like a lot of parents who have a child with a disability, I belong to a support group. In this group, we all have a child with the same disability. Like a lot of parents who have a child with a disability, I belong to a support group. In this group, all the parents have a child with the same disability. Sometimes the support group touches on this subject of how the parents can accept this situation they find themselves in. Members often remind everyone that the reason we have our child is because it is a gift from God. Yes, this child is in our lives because God knew unequivocally, we were the only one capable of handling this child’s life. This belief starts as only an affirmation but it does move most of us forward.
I think it takes us through the first stages of our realization of the work we have cut out for us. It heads us in the direction of the first stage of our recovery from this disability: acceptance.But is this enough? I don't think so. There are millions of little steps involved. I firmly believe that if we smack ourselves down on the sidewalk and feel overwhelmed at the task before us it means we gave up.Is this disability, as a parent, genetically or biologically inherited. Of course not but it IS spiritually inherited if we believe that God chose US to raise this child. I believe God knew we could overcome our own disability.
What made me reach the second step? It was a sharp reality check. Someone once asked me how I had managed, all these years, to raise my child and take care of the rest of my family. My eyes widened and I was startled by the question. It had never occured to me to think of this task in that way.All I could say was, my child, was my child. He had always been this way. It was not like all of a sudden we had a maze of things to learn and do to meet my child’s needs.My child has never known any difference and neither has anyone in our family. With each step of the journey, if a new road block was encountered, it was either attacked and resolved or gently nudged into alignment of what we thought would work. So what became a reality to me was this: this wasn't some new, over-the-top, insurmountable problem every day of my life. The reality was we took each day in our stride. If something needs to be adjusted we did it. If steps needed to be taken they were taken. If I needed to advocate for my child to another group, organization or agency, it was done. Simple as that.
It wasn't always that easy but God didn't drop a HUGE problem in my lap all at once. God eased me into the job gently. I just never asked what the job description was.