This week I asked several moms to help me write. Why? To help all readers understand the true spectrum of Autism Spectrum Disorders – not only between children, but between children in the same family. Every day this week you will get to meet a new child (or children)…they are very different from Tucker, and yet, so much the same.
What’s in a Word?
When my six year old was two, we knew life was going to be redefined. It was the first time we heard the word Autism concerning one of our children.
She was/is completely non-verbal, “low-functioning,” and very self-abusive. The fact that I know these terms shows you she is teaching me and not the other way around. The words sensory diet and self-stemming became concepts I needed to learn and teach the rest of my family.
Let me back up a moment. My husband and I have five children. Out of those five children two have autism, my middle child who will be six next month, and my baby who is two and a half. Today I will focus on my six year old (Kathy) because she, the precious angel that she is, is the one who taught us life was not going to be the way I had envisioned.
I used to see no problem with taking my children to the store or out to eat. I wouldn’t think twice about bringing anything more than diapers with me. Kathy used to throw screaming fits as far back as I can remember, I would try to understand what she wanted. I wanted her to tell us, but the outbreaks never seemed to have a rhyme or reason.
Her specialists and I started on a journey of “sensory integration.” At first I just thought it was something kind of far ‘out there.’ These people were off their rockers if they thought I was going to “brush” my child in the middle of Target. Then the tantrums got worse. The marks she was leaving on herself were painful for me (and obviously, her). I didn’t want one of my children hurt. My older two children were starting to get embarrassed by Kathy’s ‘scenes’ when we tried to go out.
It was an embarrassing sight. We were that family. The family that you probably stared at in the restaurant thinking “what are they doing to this kid?” Or “Why can’t they control that brat?” I wasn’t giving up hope though. I wanted to go out to eat with my whole family occasionally. Most other families get to, so why can’t we?
I would beat myself up about what to do to make the situation better.
Even bringing her to doctor appointments caused a scence. I found myself apologizing all the time. To everyone. For my child. I was trying every sensory thing the school told me to do. Sometimes they would work, other days it would look like she was in a boxing match. It did get better though.
She has calmed down quite a bit in her “regular routine.” She is such a sweet child when her sensory system is calm. Regardless of our struggles, I thank the Lord every day that He put her in my life.
Still, I am not ready to throw in the towel with my dream of eating out as a family. There are times we leave her at home with a very trusted sitter when she is having an off day. But every so often we try. Often it ends early with two stressed out parents and her siblings covering their ears. Regardless, I still have hope that one day we will all be together at a table with no screaming.
Maybe, just maybe everyone will even use a fork.
To read more about Jenny and her family, check out the blog: Motheringwithasideofwhine.wordpress.com