Even parents who have no experience caring for disabled children could guess the types of things I would put at the top of the list -- if they tried, for just a moment, to picture their own children struggling with an illness or disability.
They would wonder what it must be like to worry about the future and to grieve the inability to communicate with my son. They would try to imagine what it must be like to bury dreams and replace those dreams with uncertainties that literally can drive a parent mad.
But here is one of the worst things about autism -- and similar disabilities -- that only the veteran special-needs-parents will "get."
After autism slaps you around and kicks you in the ribs -- by forcing you to deal with the reality of what is "wrong" with your child -- it then does something even more painful.
It puts a mirror in your path.
A great big f'in mirror.
And in that mirror, you see not only the mistakes you make as a parent -- mistakes you are destined to repeat, even as you hate yourself for doing so -- but you also see the demons within yourself.
You see how much you grieve for yourself, as a parent and as an individual, even though it is your child who has really gotten the raw deal in life.
Score one in the selfishness department.
You see how you get so bogged down in the day-to-day of coping that you never manage to do the things you would like to do -- for your disabled child, for your other child, for your other loved ones, for yourself.
Score one in the unorganized, underachieving departments.
You see how much you wish things had been different. You look away from soccer fields and talent shows. You shut out the conversations of parents at events for your "other" child -- where nobody knows what it is like to wish that your son could just be "normal."
Score one in the jealousy and pity-party departments.
You see how sometimes you actually are angry at your child, even though it is the autism -- and not the child -- that drives the anger.
You feel your frustration rising when he stims -- because you wish he'd be doing anything, ANYTHING, else -- as long as it was something normal. (And, yep, I am not even going to put the word in quotes because, let's face it, I love him as he is but still wish he could just be normal, whatever the heck that means.)
You lose your temper when he strikes out at you, even though you know that if the tables were turned, and you were the one completely unable to talk, you would not face the world with one-tenth his energy and joy.
Score one in the bad-parent-who-loses-her-temper-and-does-not-deal-with-her-son's-disability-with-the-kind-of-patience-a-good-mom-would-have department.
The autism mirror never goes away and, man, does it shine a bright light on all your warts.
No matter where you turn, your mirror goes with you.
I sometimes feel like I can hardly function after I look in my mirror. I despise myself for everything I have not done, and for everything I cannot do.
But I know I am not the only one. And even though I cannot always see the parents walking with me step-for-step, they are out there.
A dad whose blog I just discovered tells it like it is:
Unlike the tales that Hollywood likes to tell, there are no saints or sinners when it comes to raising an atypical child. There are people that strap in, buckle up, and get the job done, and there are those that don't. There are no 'Saints' in this house. There have been times when either one of us wanted to strangle him. (Luckily for him it's never both of us at the same time). Handicapped children aren't intrinsically wonderful, beautiful, or even very much fun to be around. They're love-sponges that soak up all the love you can give them. And by that, show us that we have ever so much more love to give than we ever even knew we had. 'Mothers' or 'Fathers' don't always understand, but moms and dads do.
-- The Missing Piece