Say what???

As most of you know, my son was born almost two years ago and was diagnosed with a physical injury and a developmental delay. The physical part is fairly healed but he still receives physical therapy for his balance and to help him get a better tone throughout his body. The developmental is fairly significant, in speech, anyway. He is about a year behind. Now, in comparison to other issues with other children, we realize how healthy he is. He hasn’t tested positive on any autism spectrum, and he is not in need of occupational therapy. We are wholeheartedly thankful for this, and we realize how lucky we are.

Forgetting statistics and setting aside other children, when you have a child with delays, however minimal they are, it’s a scary thing. You cannot help but think about what it is you did wrong, even though you did nothing wrong. You ate the right foods, you got the right exercise in, you did yoga, you meditated, you prayed, you did everything right. I have a horrible paint chip eating habit, and I stayed away. Can you believe that? You think about what you could be doing now, even though you really are doing your best. After a long day at school for him, and work for me, we sit on the floor of the playroom and watch a little TV and play with some toys. Should that TV be on though? We rationalize that with the fact that he is at school playing hard and learning harder for about 8 hours a day. When he gets home, he just wants to chill out. But should he be laying on a pillow with me watching the season premiere of House? Shouldn’t we be coloring with him or something instead? By the time I get home, I admit that it’s really difficult to decipher which grunt means what, knowing full well it mostly means more goldfish crackers, or teddy grahams. Thankfully, I resist feeding him for enjoyment and pacify him. I may not be perfect but at least I have that going for me.

When people ask me if he is talking up a storm or running up and down the stairs, I just smile and say we are working on it. Other people are well meaning and go on and on about their cousin who didn’t talk until he was 3, and now he runs a car wash, yada yada yada. Or they tell me not to compare him with all of the other kids, because there really is no real “timeline”. Yes, I suppose that all kids are different. And no, I suppose a true timeline doesn’t really show up in the bible of babies. However, when you have a room full of hard core professionals evaluating your child and you get approved for funding for therapy 3 times a week, you tend to believe the professionals.

You might know me well enough now to know that I don’t need my child to be like every other child. Certainly not. But simple things like pointing, saying Mama or Dada, or asking for juice is something that pretty much every kid in his class can do. And aren’t you frustrated when you want something, but you are at a loss for words? People tend to think that a speech delay means that he cannot recite the encyclopedia. But it’s more about communication. It’s about movement of his mouth, messages from his brain to his mouth, and connection. Plain and simple. Only it’s not.

I am not embarrassed by any of this. If anything, I wonder if when I talk about it, I make it sound a bit more serious than what it is. But then I know in my heart of hearts that I explain it to people how I see it. Listen, this child is beyond adorable. And he is hilarious. He responds to theme songs and commercial jingles. He does this hilarious hooting sound with the back of his hand on his mouth and a wiggle of his fingers. When he does it quickly, it’s a greeting. When he draws it out, it means he likes his environment and wants more of it. Kind of like his seal of approval.  He thinks that his dad and mom are the funniest people on earth, and by the looks of it, he trusts us, even though he is trained to cry when the doorbell rings. He knows when the therapists are here. He even rubs his eyes and tries to lay down on the floor and pretend like he is sleeping. So it’s no mystery that the dude is smart.

I think about the long term, and whether or not he will be slightly behind forever. What kind of resources will it take? Will we teach him how to be proud of himself, self reliant, and how to make the most of what he’s got? Will we, as his parents, think of him as different, even if we don’t mean it? I imagine at some point he will give us the business. Just this weekend he stole a chicken wing and ran around the house eating it without choking. It didn’t even dawn on me that he was old enough to do that. It made me think about what we do and don’t do as parents, and ultimately led to this post.

I keep in touch with other parents in my situation and this helps. The folks who mean well and keep talking are starting to get the hint to taper down what they say and just listen to our updates. I know that my husband and I won’t place any limitations on this kid, and we won’t let anyone else either. But in order to do that, we need to be honest with ourselves and really think about what we do and don’t do as parents. Questioning our routine, maybe rethinking some priorities will help. It doesn’t mean that we are beating ourselves up. And yes, we need time for ourselves as well, but we can make that work. So maybe tonight for my part we will sit down in a circle and try to read to him, without the tv on. Judging by the look on his face last night, House isn’t going to be that great this season anyway.

Bebe

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2 Comments (+add yours?)

  1. Big City Copper
    Sep 23, 2009 @ 18:51:16

    I’m proud of you Bebe.

    Reply

  2. thecrabbucket
    Sep 26, 2009 @ 05:53:08

    I love this post. And I love you for being exactly the kind of mom David will ever need. Love you Asshole, your well-meaning friend, Lulu. 😡

    Reply

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