It’s Never Lonely Over Here in the Alternate Universe of Asperger Syndrome

Mothers of kids with Asperger Syndrome and all kinds of disabilities are always telling me they feel alone.  I always reply, I’m not lonely – I’ve always got guilt as my constant companion!

That ugly “G” word – guilt; but guilt isn’t necessarily a bad thing.  Guilt is my main motivator!  One of the reasons other parents constantly tell me I’m such a great parent trainer is because I’ve done everything wrong at least one time.  That’s how I know what to teach other parents.  I learned the hard way. Guilt is what keeps me from making the same mistakes over and over again.

Yes, I know all the traditional wisdom taught about loving yourself and forgiving yourself and not allowing guilt to guide your life.  I’ve just never been able to live that way, no matter how much I want to.

Yes, I rationally understand that I had no control over my kids’ personalities.  I did all the “right” things when I was pregnant.  While I don’t like it one bit, I do understand that there are just some things in life I can’t control.  Being catapulted into the alternate universe of Asperger Syndrome is one of those things.

So what do I have to feel guilty over?  It’s probably a lot easier to cover what I don’t feel guilty over, but I’ll attempt to share some things that make me feel guilty.  First and foremost on the list, I feel guilty about the parenting my typical son received.  That’s a hard one!  How do you live over here in the alternate universe while keeping one foot firmly planted in the “real” world?  It’s like splitting yourself in half.

Recently, my son with Asperger Syndrome introduced to one of his friends.  He said, “Mom, I’ve been trying to tell her what my childhood was like.  All I can remember is one big fight.  So, what can you tell her, mom?”  There’s that straight-arrow thinking and meticulous honesty again!  I thought about it for a minute, and said, “Actually, that’s all I remember, too.” That straight-arrow landed square in the middle of my guilty heart.

Balance – such a touchy, guilty subject.  It’s something every family who has a member with Asperger Syndrome works on every day. Let’s face it.  There is a lot more for us to balance.  There are therapies, ARD meetings, special behavior plans, daily schedules, medication management, and the list goes on and on.  Then there is all the “real” world stuff to do.  There’s work, the holidays, the other family members lives, and working to make everything “look” OK for all the people who love us.

The bottom line is guilt does no real good, except to make you vigilant and motivated.  Although I don’t like my daily life on some days, I wouldn’t trade it.  I couldn’t trade it even if I wanted to.  So I might as well try to like it.

The only replacement for guilt is acceptance.  When I choose to accept my life in the alternate universe, I seem to be filled with thankfulness and not so much guilt.  Guilt subsides when I realize that I did all I knew to do at the time I did it.  I cannot control what I don’t understand and neither can you.

My guilt will ever be with me, niggling me on, keeping me moving.  So will my acceptance that this is my life now and it’s not such a bad place. It’s all about that balance.

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