Excavating your kid’s life

24 years ago I became the mother of twins.  They were gorgeous, full term bright-eyed girls who looked nothing alike. One had piercing, dark blue almond eyes and a very serious expression, the other had big, round grey blue eyes and was always looking beyond you. The round-eyed baby was etherial and her eyes would click back and forth like a kit cat clock we noticed from the time she was three weeks old. She would be totally stoic and then cry, kind of like a kitten. “Blind babies have eyes like that…” a friend casually said.  Maybe a little harsh buut it was pretty obvious that something was wrong with this kid’s eyes and at three months we got a diagnosis: ocular albinism. It  shouldn’t have been a surprise, my Father had the same thing. My pop had the same light blue eyes that clicked back and forth.  My dad was also legally blind. My dad was an old-timer, born in 1928 and honestly, I had never thought of him as disabled. He supported my family, made us go to church and was absolutely obsessed with both politics and sports. It never occurred to me that he had a disability. Then again, I never bothered to ask why he couldn’t see. I guess it didn’t matter to me.

Turns out that I felt a little differently about my own daughter’s diagnosis. At four months, our local county supplied us with an Infant Stimulation program and from that moment on, my daughter went to school almost non stop for the next 22 years. From infant classes, we went to toddler classes which included the other twin and it became really obvious that even with all of the intervention, my low vision baby was not catching up with her sister. In addition to being slower, she had terrible fits and would scream and cry when I so much as left the room, the kitten cry had turned into a tiger roar. She would play with q-tips rather than toys and although she had lots of words that she could say, she wasn’t talking.

It doesn’t seem like 1997 would be the dark ages of diagnosis for kids with developmental disabilities but we did have to wait until she was for to get an autism diagnosis, the prevalence at that time was 1/10,000.  The only thing I knew about autism was from watching the movie Rain Man and even with that really limited knowledge, we knew what was going on with our daughter. We were relieved to have the diagnosis because we had heard of many treatments for autism and were happy to have a direction to go in.

Now, when you have twins, and you see one sailing along, developing language and tiny, adorable opinions, and then see the other continuously stacking the same tower, lining up the same q-tips and using a banshee style scream as (seemingly) the main form of communication, you will become VERY motivated to work toward some sort of resolution.

I looked into a few treatments and had I had the money, I would have gone full on Son Rise. If you haven’t heard of it, it’s one part attachment parenting, one part Scientology and one part Amway. Plus, you get to celebrate everything and although they didn’t mention cake, my celebrations always include cake so, you know cake.

I didn’t have money so I chose Applied Behavioral Analysis using Discreet Trial Training which is still pretty much being done the same way now as we did it 20 years ago.  I still have mounds of paperwork from my home program which I keep like I’m going to go back and find something that I missed, or find some clue or maybe just to go back to a time when I though that my twins would be graduating from college together.

I also have at least a two foot stack of old IEPs, MFEs, quarterly reports from case managers and various therapists. I can’t part with them because some part of me knew that my daughter was never going to have so many people pay so much attention to her. As an adult, she has no friends. No one texts her, no one calls her phone (in fact I have to ensure that I make one call a month from it or it gets deactivated) and every aspect of her life is carefully “staffed” by all of these amazing compassionate strangers we call home health aides. Nothing in her life is spontaneous. This all may sound sad but I think she is really happy with  her life and the way things are.

All of these mounds of paperwork may have really helped her live as independently as she can, I’ll never know any other outcome but I can look at these papers, these assessments and I know that there were other people at the other end of these assessments writing them, thinking about her and wondering how she was doing.



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