Life is not easy. Especially when you are in a family of invisible illnesses and disabilities. It can be serious, funny and downright hard! But we make it. Just like everyone else. We just do it in a different style.

Wednesday, April 1, 2009

A Lightbulb Goes Off

This started out as a response to one of my friend's blogpost. Mia, at General Hysteria, wrote a very important post about how she was finally going to change from being the MommyBot, to being a Mom.

MommyBot is my word for the mother who is running herself ragged tending to kids to her own detriment, and their spoiled rottenness. The mother who looks horrible, knows it and is so demoralized by her own tiredness that she has ceased to care. The mother that secretly wonders why she became a mother at all. I know, we all have "one of those days," but this is more than one day or two. Before you know it, this feeling stretches into months or all their elementary years.

Now, I know this is old school, but sometimes, I feel we are hovering too close, especially, if we have children with special needs or autism. I am not talking severe autism here. Those children do need constant care, especially if they can be aggressive or bolters.

No, I am talking about jumping at every call, every cry and every whine. Here is the response I was going to leave her. It got so long, it became its own blogpost!


Yaaay, Mia!

You don't know how happy I am to see this post!

Not knowing you as long as friends I have had for years, I didn't want to get on here and give you a good talkin" to, but I was really tempted. Perhaps my energy came through the Internet!

We can't give our children everything! We can't be there every moment. This is a left-over response from when they were really little and really needed that kind of care. I am not talking about severe autism that continues to need close supervision. I am talking about responding to every whim and noise.

One of the hardest things I have to do in the Unique Family is NOT run to the aid of everyone every time. With my bunch, there wouldn't be any of me left.

I don't know if you ever saw the movie "Ray," about Ray Charles. One of the most moving scenes was when he fell in their little home and his mother wouldn't come running to his side. She actually didn't even say, "honey, get up." She stayed quiet while her darling boy learned to rely on his other senses to orient himself to the world.

I keep that image in my head, EVERY DAY.

My oldest, Aspie son is nearly 17 now. He is so independent, it scares me, but I am happy. No one will take advantage of him. He knows how to shop, cook, clean for himself. He is learning money management and how to save. As we work with DORS in the next two years to get him working, he will be ready to be on his own.

My youngest, on the other hand, is my whiner, mommy's boy. And being chronically ill, makes it worse. Yesterday, he wanted to make a cinnamon toast sandwich. I told him how to make it. He went to look for the cinnamon and couldn't find it. Normally, I am just on "auto" and jump up and get it or even make it. But, recently, I decided that at 13, nearly 5'10" and 211 lbs, he is big enough to start learning the truth about life and his condition.

I told him two places to look, how to spell it and what color the bottle was. Five painful minutes went by. Everything in my heart strained to get up and end it, but I stay glued stubbornly to my chair. He literally took everything out of the top spice cabinet, then walked in and said he couldn't find it.

I sighed but stayed put.

"Go back," I said. "Look for this word," writing 'cinnamon' on a piece of paper, "It is either in the top spice tier or the one with the door on it."

He responded,"Oh, I didn't hear the second part." This is common in speech/language disorders and short-term memory deficits.

Back he went for ANOTHER 4 MINUTES! I was positive the toast was cold by this time.

But he found it. He called out triumphantly, "I got it!"

Trying to stay as calm as possible, I said, "Very good, now finish the sandwich. Do you remember how to do it?"

"Yes," he replied.

A few more minutes later, he emerged from the kitchen with his sandwich on his plate. He sat, ate it in silence and then said,

"Thanks, Mom," as he went to clean up and saunter back into the living room to watch TV. He practically fell into the easy chair, obviously tired from that little bit of exertion.

But, I got a "Thanks, Mom."

Not because I made it for him. I usually have to say "Now, what do you say?" to get the proper 'thank you.'

No, this reply was based on something different.

I didn't save him. I didn't make it easy. I made him do it. And, he thanked me for the experience.

Moms, I know we straddle a very tall fence. Spoil them or fear we are neglecting them. Run to every call or see if they can work it out for themselves. Don't be too hard on yourself if you are one side or the other. I straddle that fence, falling over to one side or another, too.

But, I think I am finally finding my balance. You will, too.

Take care.