mommy4autism

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Structure & Chaos

on December 20, 2011

I am the mommy of a child with Autism. You already know that. For pete’s sake, it’s practically the title of my blog site, right? Well, I had to clarify, you know, just in case…

Anyway, now that I’ve reminded you of that particularly important fact, I want to talk briefly about what it means to be a Mom like me. If you’ve read my blog before, you already know that, in general, life is full of ups and downs with special needs kids. You know that we have hard days and then we have days with triumphs that fill us with joy and make us very proud to be the parent(s) of such awesome, unique kids. But there’s something else on my heart today…something maybe a little less joyful, a little more about those hard days I mentioned earlier.

I personally work from home, and so I am home when my son gets home from Kindergarten. Sounds great, right? It’s so sweet that I can be there for him when he gets home. I’m happy that I can be here for him, don’t get me wrong- but there’s more to the story that people don’t often think about. What is it? Structure. All kids need structure, and autistic kids of all shapes and sizes need it even more than most.

Unfortunately, it takes kids with special needs a lot longer to get used to a certain type of structure, and even then, when they do, the whole thing can fall apart in a day because that particular technique simply doesn’t work anymore. Let me give you an example.

When Alex was 3 or 4, I discovered that his special needs preschool was using PECS (Picture Exchange Communication system) to help direct him in activities and communicate with him more effectively. I was ecstatic, because he was responding so well to it, and so I decided to learn how to use the system and implement the schedule and other pieces in our home environment.

I went a little overboard. I’m not gonna lie.

There were pictures for everything, binders full of different types of food or toys, depending on whether he asked to play or snack on something. I converted his toy organization (or lack thereof) into bins, neatly stacked and placed on bookcases, then covered by sheets, so he would have to use the picture to ask for what he wanted. Velcro was my best friend. It was my thought that, because this system had worked so well at school, it was sure to work perfectly at home, too, right?

Well, I was wrong. Or, more appropriately, I was overzealous. Needless to say, I pretty much changed my son’s whole home life organization overnight. Over. Kill. The poor little guy was confused and frustrated.

This is just one example of one time I tried to do something to help add a little structure to my son’s life, like a “Good Mom.”

I will say that I stuck with certain parts of the system, and, over time they did work out to our advantage, but not nearly to the degree I had my heart set on.

The reason I give you this example is that, as noble as our intentions may be, as much as we want to do things with our kids, help them learn, succeed, communicate and lead less complicated lives, parents of special needs kids live a life of trial and error, daily. You never know what’s going to work, or what is simply not working because you just didn’t give it enough of a chance to work.

And some days are heartbreaking, because those things that *used* to work don’t work any longer.

There are still remnants of the PECS system all over the house…and I know that probably the most important thing I could do is re-implement the picture-oriented schedule, but do you know what it’s like to work, try to give your child some quality “together” time, AND develop AND teach a whole system that *may* or may *not* even work to begin with? And then to be able to stick with it even when he isn’t responding makes the whole thing feel so useless.

One of Alex’s therapists once told me that he sees parents try something for so long that they may have been 90% there…that if they had just kept on going on, being consistent with their technique, it would have worked. But we don’t always do that, because it’s disheartening to put so much effort into something that shows no progress over an extended period of time. And so they fail.

So why I am I blogging about this? I’m not sure, maybe just to get it off my mind. Maybe to give you a little “slice of my life.” Probably because I’m feeling inadequate as a mother. But the long and the short of it is that I am exactly that. I am a mother. I am not a special needs teacher, or therapist, or doctor, or specialist in the broad spectrum that is Autism. I am simply Alex’s Mama. And as Alex’s Mama, I have to work a little harder to provide appropriate, successful structure for my son’s home life.

And you know what? That kinda sucks.

Forgive my attitude, but it is, after all, my blog, and I think it’s important for other families to know the additional expectations that lay heavy on the shoulders of a family with a special needs child. I don’t ask for your pity, but I do find that informing people of these kinds of struggles brings a little more understanding into the world.

I feel lonely and lost sometimes. I wish I had all the answers, and I wish I could find a structured plan that would make Alex feel more settled. So many ideas, so many techniques are thrown at me every day, but how can I possibly know which to implement at which time?

The answer is that I can’t, of course. So I just try things one at a time, instead of plastering the entire house with Pictures & Velcro (which ruins paint, by the way) and changing his whole routine overnight. See? I’m learning, but I’ve got a long way to go.

So, I’m just trying and I’m loving him the way God taught me to. But it’s a good thing I’ve got a cheering section to keep me going!

(P.S. I’m cut off from buying any more Velcro. No seriously, it’s, like, an obsession.)

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