Anybody who has a child with a disability knows it's an very different parenting experience.
With a child without a disability, you are the parent, the leader. You call the shots. You want to teach your child the right way to do things, and once you show them what is expected, that is it, they better tow the line, to use the old cliche.
With a child with a disability, it's the polar opposite. You cannot expect the child to do something they are just not capable of. They have limitations, and to try and push beyond them is like trying to cram an elephant into a light socket. Forget it, folks. It ain't happening.
So you learn to take the child's lead. Instead of them following you, you follow them.
I realize some people think this is nuts. The child calling the shots? What would the parenting experts say about that one? Making concessions for a child? Impossible!!
My husband and I have been the direct, and indirect, recipients of these opinions.
For example, Mishayla gets easily agitated and nervous in a place where there is a lot of people. This is common for many children with developmental disabilities. They just aren't able to process a lot of stimuli at once.
One place Mishayla would have these "melt-downs" was in restaurants. She would not eat at the table. The only place she was happy, was underneath it, where she didn't have to see anybody. We tried everything at first to get her to not do this, but she would become so distraught, then we would get upset, and that would be the end of any type of harmonious dining experience.
So we said, "To hell with it. Let her do what she wants."
So when we went out, under the table she would go, usually with her iPod. The waitress would come and want to take our order. Tony would order, then I would order, then Tony would say, "and she'll have the corn dog with the fries, and a diet Coke."
The waitress would look at us, perplex. She probably thought he was just an eccentric, maybe feeding his imaginary female friend. When we would see this confused look, we would point under the table to our daughter, happily listening to her music. When the food came, we would pass the food and drink down to her, and she would have her own private feast. Sometimes we would pass our food down to her, and she back up to us.
Some waitresses found this charming, and would laugh and play along. Others I could see found it pretty bizarre. Not to mention the looks of some of the other patrons.
It was easier when we had a booth. But if we had to have a table, that got pretty interesting, because everyone can see what's going on down below, and that there is a little person under the table eating.
I remember one morning we had gone to breakfast at the International House of Pancakes, and we had to take a table in the center of the restaurant. Of course Mishayla adhered to her usual routine. Our food came, and as we was eating, I looked up to see this man in a booth directly in front of us. He was with his wife, and three children around Mishayla's age.
To put it in the vernacular, he looks at us like we were the scum of the earth. His eyes said what kind of people would let their child eat on the floor in a public place?
But I was willing to endure people's derogatory opinions and dirty looks if it's going to make my daughter more comfortable, and that was all there was to it.
And that included my own family.
My own mother could not fathom this parenting philosophy we had embraced. When Mishayla and I lived with them for 3 months, it drove my mother nearly to madness to see me allowing Mishayla to eat on a snack table in front of the TV, because that was the only place she would eat. In the house I grew up it, meal time was nearly a religious experience. It took place only at the table. These were the hard and fast rules of the universe I was violating.
"That child is running you when you need to be running her. You will regret it."
Whatever, I thought. And the thing is, she now eats at a restaurant just like the rest of us. What she needed was time. For a child with developmental disabilities, everything is in slow motion. What takes most kids a short time, can take someone like Mishayla years. But it does happen. It just happens on their own little clock, and if you give them the space to come to where they need to be in their own way.
This has been true with many things with her. Just this year, at age 12, she began to sleep in her own bed in her own room, lights out. And she prefers it that way now, after years of sleeping with Tony and I, sleeping on a mattress in the living room; anything to avoid sleeping in her room. And many kids go through this; but it takes them less time to come to the place they need to be. It took her several years, but she got there, which is what she always seems to do.
Unconventional? Maybe. I often think the forces of the universe gave Mishayla to Tony and I because we are unconventional, independent people that aren't easily swayed by the opinion of others. We are comfortable outside what is expected. And parenting a child with a disability can often leave you on the outside looking in.
I say embrace it. Eat under the table. Sleep on a mattress in the living room. Learn from a child that has their own internal clock no one can interfere with.
I always say kids like my daughter have more to teach us then we have to teach them. And I'll always be learning.
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