Sunday, June 30, 2013

The Lies People Tell About Special Needs Parents

There's a narrative that floats around a lot about special needs parents. It goes like this:

Doctors told them their baby would never XYZ. But they didn't believe them. They refused to give up and now their child can XYZ!

This narrative is told over and over again. If you're watching for it, you see it everywhere.

I watch for it. I used to breathe it in, let it wash over me. I told myself: That's gonna be me one day.

Even still, I want it so badly. I want Malachi's disability to be conquered by hard work and determination. I want it to be just a matter of how much I refuse to give up. If only it could just be a matter of how much I refuse to give up....

But what I'm realizing is that whenever that story is told, it is never the whole truth. And, even more surprising, for every one of those stories, there are hundreds of parents out there who are trying just as hard and never giving up but yet somehow not getting amazing results. Those stories never get told, do they? Who would want to hear that story?

Malachi is three years old this week. If I am totally honest, his gross motor is nowhere near where I thought it would be by now on his first and second birthdays. He still can't sit by himself, let alone walk. If I can blot out from my memory the times when I thought he would have progressed so much faster, I can be pleased at the progress he's made in recent months. He is doing very well with sitting in a chair and I can even prop him up on the floor for a quick second or two without worrying too much about him falling over. His manual dexterity is improving greatly and his iPad skills are impressive. He is self-feeding quite a bit and though the quantity and variety of meals are a daily struggle, he is eating a lot more than last year. His speech is fairly clear and age-appropriate. He has pretend play. He is very funny. He can sight read lots of small words. He really loves numbers, letters and languages.  He can count in Spanish, French, Russian and Japanese and constantly asks us to translate things.

Yes, there are a lot of things Malachi is very good at. There are a lot of reasons for me to be proud of him and proud of whatever role I've played to get him here.

But that's where it gets murky. How much credit do I get for what he can do now? For example, was it my hard work that instilled a love of numbers in him? I don't think so. I think that in the chaos of an injured developing mind he just really finds comfort in predictable sequences. People tell me: no, you're a great mom, that's why. But that makes me feel squeamish because the other side of that coin is that if it was my hard work that made that happen, then why is it that every time I apply myself to the areas he struggles with I come up empty-handed? Am I just not trying hard enough? Have I — God forbid — given up?

I'm coming — round and round, like a buzzard circling — to believe that there is nothing I can do to fix Malachi. I come to this realization a lot, but it always butts up against that other narrative about the mom who never gave up and now her kid is OK.

It's so hard to know which obstacles are put in our way to overcome and which are our crosses to bear.

If there is an undeniable good to come out of this situation though, it is this: I have been humbled. I know now how little control I have on the world. I know now that life is not about checking off the right boxes, that my effort alone will never be enough to make the world right.

I know that even if Malachi does walk one day, it won't be because of anything I did. It won't really be because of anything Malachi did either. There are some kids who just don't ever learn to walk and it has nothing to do with whether or not they or their parents gave up. Then there are some who, it turns out, do.

Call it God. Call it fate. Call it whatever. But don't call it me.



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9 comments:

  1. Shasta: This is so good. So true. So honest. Obstacles to overcome and crosses to bear -- each life has a sprinkling (or an avalanche) of each. You ARE a good mom, and Malachi IS a wonderful and smart boy. His story will unfold as it will. Love to you all.

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  2. Yes. Absolutely. Sometimes what is just is.

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  3. I have to laugh every time someone tells me what an great mom I am because my son (who just turned 3) can spell certain words, has a fascination with numbers, and knows the alphabet frontwards and backwards--literally. I have gotten to that place where it's so much easier to stick him in the corner of a chair or couch and give him the ipad, tablet, ixl, or other device that teaches him all that stuff. So yeah, that's not me teaching him, that's me being the lazy mom and letting electronics teach him. And also I very much believe that he sticks to that stuff because he is good at it, he's comfortable with it, and it consistently impresses adults.

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    1. lol, I know exactly what you mean.

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  4. There are days that I feel so good with the staff we do with my son (he has cerebral palsy - spastic diplegia. There are other days, like yesterday (after we visited his doctor for an evaluation)that I feel I don't do enough, I don't know how to do things correctly and that the child is not helping at all. Yesterday I was angry and desperate. I didn't do any exercise with him at all. Then at night I prayed ''You gave him to me. Please give me the strength to do what I have to do with joy."
    Today the anger and despair were gone. We did all our exercises easily. The child helped a lot.
    There will be good days and bad days. But even if wanted to lose hope, hope won't leave us.
    Sorry for my English. I'm not a native speaker, I live at the other side of the world.

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  5. Nice post. Thank you so much. I am sure I will recommend it to all of my friend. At the same time, I would like to invite you to visit my blog at http://1newbornbabyclothing.blogspot.com which share all my happiness and sadness with you. Also you may get a chance to win many special gifts and offers from my blog. Looking forward to hearing from you very soon.

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  6. :'-) Special needs is (always &^%$@%$) plural, and I'm glad you acknowledge it in XYZ. Thank you for this article, and fighting for Malachi, not against XYZ.

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  7. Acceptance and continuing in good isn't the same as giving up. Sometimes we strive so hard against something or for something that we are always striving, not enjoying that which has been achieved. It's okay to be still, to sit in that moment, to enjoy exactly where you are in this place. That's not giving up.

    I enjoyed meeting you and the boys yesterday at the park. It was absolutely wonderful to be able to see two little boys playing in the water. You were educating others simply by being there and enjoying your boys. You were an advocate for your son in that moment. I hope this is an encouragement to you?

    Blessings,
    ~Kelly

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    1. Thanks very much, Kelly! I know exactly what you mean because watching you just being there with and for your happy brood of kids was an inspiration to me. It's nice to imagine that I have been that for others.

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