V is for Vest

Many people with autism also experience sensory integration problems. You may notice that your son wears long sleeved shirts and pants, even in the warmest weather. Or perhaps your daughter can't tolerate seams in socks, or tags in any of her clothes. Some kids run around constantly, jump, climb, hang upside down, or purposely bump into things. Others will squeeze their eyes shut tightly if the room is too bright, or cover their ears to block out certain sounds.

Sensory integration disorder (also called sensory processing disorder) can co-exist with autism spectrum disorders, and has also been seen in people with ADHD. It can be diagnosed by an occupational therapist (OT) who will know lots of strategies for dealing with it. One of the strategies we used with our son for many years was a deep pressure vest, as seen in the photo at right. I have written an article that gives more information on our experience with the pressure vest, and how it differs from a weighted vest. I hope you'll check it out.

It looks like all the hard work is finally paying off, and our son will soon be saying goodbye to his pressure vest forever. Right now we are conducting a trial at school, so his OT can evaluate whether he can manage without it. We had already stopped using it at home some time ago. And his use of the vest at school was reduced a fair bit too. Assuming the trial goes well, he won't use it at all anymore.

This is one of those moments we reach as parents of special needs kids, that we thought for a long time we would never see. It helps to see the progress, especially when in other areas we still struggle. We are always growing together, and looking back on the years we relied heavily on the vest to help our son deal with sensory input I feel great today. A step at a time, we're moving forward!

I'm blogging my way from Z to A in May!
You can find my "W" post at Parenting in the 21st Century.

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Universal Screening: No More Down Syndrome Children?

A non-invasive screening for Down syndrome could replace 98% of amniocentesis, claim the authors of a recent study. But advocates for families of people with Down syndrome have expressed concern that universal access to a safe, first trimester test would mean a larger number of women being pressured by doctors to terminate pregnancies if the fetus tested positive for the condition, otherwise known as trisomy 21.

Dr. Brian Skotko specializes in Down syndrome, and was interviewed for a recent Time magazine article. He welcomes the new test, but is also concerned about the potential downside. "81% of medical students reported they get no medical education about people with intellectual disabilities," says the article. Shotko wonders how doctors will counsel an expectant mother after a positive test result for trisomy 21. His own research has found that incidence of the condition dropped significantly with improved screening options, when projections based on maternal age show there should have been many more babies born with Down syndrome in recent years.

Could universal access to a safer screening mean the eventual elimination of all Down syndrome children? “As a clinician," he says, "I raise it as an open question. It's a question of which forms of life are valuable.”

As the mother of a child with autism I have been confronted with a similar question: if current DNA research led to gene therapy that could "cure" autism, would I want my son to receive the treatment? It is tough not to want the very best for our kids, and reducing the challenges they face in life is certainly an attractive proposition. But would he still be the same boy afterwards? I wonder if he would, or whether it would change him forever. Autism is part of what makes my child who he is: it is part of his world view and it has shaped his personality since he took his first breath in this world. Could I bear for him to lose something that integral to his very being? Could he?