Reality Bites

I subscribe to a lot of autism support pages. I learn a few things, and I always hope I have some wisdom or experience as the parent of an older child I can humbly offer in return.

Lately I’ve been seeing question after question about behaviors. Specifically, parents of young, and sometimes very young, children asking what they can do about safety, melt-downs, and self-injury. “I’m afraid he’ll hurt himself, I can’t take my eyes off him for a minute, what can I do?”

I can’t bring myself to reply to this kind of post. How do you tell someone get used to it, this is your life! And still manage to be positive and supportive? My life has not been easy. No, my life has been hard! No matter how much therapy or what kind your child gets, no matter how many distractions and holding maneuvers you master, no matter how many blaring alarms you put on the doors, your child is probably still going to get hurt. Or hurt himself, or you, or someone in the vicinity that’s close enough to come in contact with their feet or their teeth or the object they’re going to throw without warning. They are still going to escape your ever-watchful eye, when you’re in the bathroom, or look away to pay the cashier, or check the price on something. Hopefully you won’t have to sprint through a yard at a picnic to keep them from running off a cliff, or have the whole family searching neighbors’ backyard pools or the lake to make sure your baby is didn’t get to them first (speaking from personal experience *shudder*). But things will happen, no matter what.

And you can never fix enough things to keep them totally safe. Alarms on all the doors? They learn how to open the windows. Put a fence around your yard? They learn how to get out of it, or climb over it. Put down two carpets to keep them from hurting themselves in their room? They start pulling the chair rails down and eating the carpet padding.

I’m sad to say, the only thing that keeps our kids alive and healthy is us. Us losing sleep so they’re never alone, even at night. Us being with them everywhere we go because no one else would react like you would in an emergency and know the signs that one is coming. Us leaving places before we would have and leaving carts full of groceries in stores to chase them outside when they bolt. Us knowing within a minute that they’re gone and running out the front door to find them before the unthinkable happens.

It’s a thankless job, for sure. Your other children sometimes resent the constant attention your special child has to have, and the fear that comes with living with constant volatility. Most of your family – even your spouse – and certainly not the rest of the world, will ever know how much you went through, and what a miracle it is that your child is alive and well! So, yes, you will have to do exactly what you are doing now for years – and years. Sometimes the unfairness is totally draining, not that you have been given this special child to keep safe, but the unfairness of no one ever knowing how you did it and giving you your appropriate super-mom props. And when you can’t work because of all this, even looking down their noses at you because that’s “all you do.”

So I empathize with you, the mother of the three year old, the five year old, the seven year old. I empathize, but there really is no answer except to keep doing what you’re doing, because it really is all up to you. And as someone once told me, you shine like a star in a sky full of “normal” parents. So hold your head up high and learn to sprint!


2 thoughts on “Reality Bites

  1. You respond the just the way you do, with kindness and you are great at it.

    People have a tendency to want to sugar coat things, but you know I have always appreciated and found other appreciate the message, “yeah, autism is tough, but you adapt. I understand your pain, but you can do it. I am there for you when you need me.”

    Now, let’s tell them something that it useful and compassionate, like, “It is important to do all the things they are telling you to do to address autism, but make sure you take care of yourself and your whole family. They need you and you need you at your best.”

    • I’m afraid I’ve never really learned to take care of myself that well all these years! The only thing that makes it better for me is her getting older and being able to entertain herself and the seizures abating for a while!

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