Just Plain Weird

Ten years…. Max’s age as of last week and the amount of time I have been a mom to a child with cerebral palsy.  One would think, I would think, that I would have gotten the hang of it by now.

This past year brought Max much success and many skills.  He overcame a terrible case of anxiety and panic and sailed through school rather easily.  He began to walk without his walker and gained independence in taking care of himself, going to the bathroom, getting dressed and staying home alone for a short bit of time.  He can now swim enough to play in the shallow end of the pool without any assistance and he sleeps better than ever (with the help of a happy pill, otherwise known as Melatonin.)

The problem is, with all this progress, he is still neither here nor there.  The less his disability stops him, the more unfair things seem.  The irony of that is giving me a headache.  He wants to live in the places where no one else has CP  – where he faces things he cannot do every minute.  More recently, the hurdles are social. Children ( and adults alike) do not/will not/cannot comprehend how someone can be regular on the inside but different on the outside.  There is just no explaining it. It is not enough to say that you accept people with disabilities or act like it’s no big deal. There is something more, but I don’t really know what it is. This  is our final frontier.

Kids either think Max can do whatever they do and they do not adjust their expectations in any way and completely fail to see that Max is no longer standing near them or involved in whatever the activity is but they keep going about their business OR the opposite happens and all they see is his disability.  Last night, Max went to a community kids event at our pool.  The kids his age were all diving off the diving board and in the deep end but he found some younger kids to play with in the shallow end.  He was alone some of the time, and with kids some of the time.  When he is with another child, he is shining and smiling and will do or play anything.  Then the child leaves.  Max stays put and light goes out until another kid happens to come along.   Part of the problem is that I am extremely and supernaturally aware when I am with Max.  I am always close enough to come his aide physically, which puts me in the unfortunate position of overhearing, over-watching and over-analyzing.

In line at the snack bar, a boy came over to Max and said hello – I didn’t know him but Max did.  They exchanged a brief hello and then I overhead the kid point to Max’s walker and say to him, “I feel so sorry for you.  You always have to have that thing around.  What’s wrong with you?”  Max said, “It’s ok, I was born like this,” and turned away to order his Skittles.

Sure, he handled it and didn’t know I even heard it. I suppose exchanges like that are so commonplace, he doesn’t even mention them.  But, it happened and it keeps happening all the time.  At camp, a boy told his mom that he was so proud of how nice he was today because he talked to the kid with the walker.  Well, whoop de do…

Max IS going to camp – a huge milestone and the camp is doing a great job of helping Max, but perhaps they are helping him a bit too much.  I sense they are stopping him from doing certain things and keeping him away from the other kids because they are too aware of what he can’t do and that he needs help.  We are thankful that they are willing and able to help him in the areas he needs help with so I hesitate to complain. Granted, we are paying them to help him, but we all know not everyone is accommodating and accepting so we have to tread lightly.

It seems as though they are overcompensating by making it ALL about his disability. A child who has known him for years came home from camp alluding to the fact that he is doing a good job of “treating Max differently.”

Either the disability matters or it doesn’t.  Which is it?  I just don’t know anymore. Should the fact that he needs help putting on his shoes, tying his bathing suit  and carrying his backpack define him as a person?  Because most kids don’t need help with those things, the fact that he does makes him different, and in the eyes of most, less than.  Except…. for the purpose of pointing out how lucky you are because you don’t have trouble with those things.  People repeatedly tell us how they get their kids to do stuff they don’t want to do by reminding them how much harder the very same thing is for Max Rubin.  He has become a de-facto parenting aide.

It would be like the rest of us having our faults and limitations pointed out to us by everyone who sees us.  If it were me, a person behind me in line would say, ” Hey, how come you don’t always work out when you say you are going to and why did you fail to pay the electric bill on time? ”  Max has his limitations pointed out to him every turn.  Doesn’t anything else matter? Again, I don’t know.  All I know is that so many interactions lately are strained, bordering on uncomfortable, and just plain weird.




One Response so far.

  1. Christie Ayers (Sterling's Mom) says:

    I LOVE this post! I had the same “CP MOMMY MOMENT” at the pool this year. Sterling was left in the shallow end with the younger kids while his peers were jumping off the diving board and doing all sorts of acrobatic tricks. Now I know why he hates going to the pool. Never again will I make him go. It was all I could do not to crawl back to my car on my hands and knees in desperate pain….pain that radiates from the marrow of my bones! I have many of the same thoughts as you express. Does it help because we can relate? I don’t know. Perhaps because now I feel a little more normal. 🙂

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