Tag Archives: Special Needs

How far is too far?

When you have a child who needs help, you will do anything for your child. This applies to all children. If your kid shows potential as an artist, parents will provide supplies, enroll the child in classes, or contact a friend who owns a gallery for advice. Parents of children with developmental delays are no different. Well, maybe a little different. We will really go the distance…and sometimes that distance may be too far.

Is it too far when we drive our children to appointments with therapists that take 3 hours round-trip — even when there a great therapists in our towns? We do this because our children have a better rapport with the 3-hour-drive therapist. Is it too far when have our entire family eliminate gluten from the diet because we have been told that our child has a drug-like response to gluten? We do this because we believe our dietitian and because the whole family goes on stand-by together.

In this vein of perhaps going too far, I took Isabella for her virgin neurofeedback session. The drive was not taxing (except for the traffic on the way home) and I do not plan on asking any other family members to use neurofeedback. Here’s why I’m not certain if I’ve gone too far. Among the forms that I was asked to complete about Isabella was a symptom check list. I hesitantly checked hyperphagia. It’s something that I know a bit about as a dietitian — it’s an inability to know when to stop eating. I also checked impulsivity, not hesitantly. Combined, hyperphagia and impulsivity are a bad combination. The result:  grabbing 7 cookies from a tray after eating a large meal and proceeding to eat all of them within minutes.

So, the MD who administered the neurofeedback informed me that its impact would last a few hours following this first session. Next time, the positive effects would last longer. We got home, I went upstairs for about 2 minutes or less. I came down to find Isabella surreptitiously stuffing a box into recycling. As I came closer, I realized that she had eaten all 3 (as in 3 children) of the chocolate treats…in that 2 minutes or less. Her coat and backpack were still on. I guess we’ll wait until a few sessions to see if the positive fall-out of neurofeedback lasts for more than the car ride home. After all, we did sit in traffic.

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Leaving home for more than an errand

A 13-year-old (same age as Isabella) boy with Asperger’s left school and rode the subway — for 11 days. Just writing the sentence makes my heart sink. He was reprimanded in school and did not want to deal with further scolding at home, so he rode the subway until a transit worker spotted him. All parents worry about their children getting abducted, thanks to all the publicized incidents since Ethan Patz in Greenwich Village. I remember seeing his image on milk cartons. Parents of children with development disabilities have much greater worries. We worry that our kids will get distracted and watch something in a store window instead of coming home. We worry that out kids will forget the way home. We worry that our kids will decide that they want to go to the park instead of coming home. So we don’t send them out alone. How long can we do that? At some point, children need to become independent.

 

Accommodations

Providing accommodations for children with special needs is standard practice in public schools. In fact, if a child has an IEP, it’s the law. Accommodations can be as simple and benign as seating near the front the classroom. These accommodations are meant to help the student perform better in school. Children without “special needs” are also accommodated. Instead of making special provisions for these children, the entire school changes. The most well-accepted of these accommodations is the no nut policies enacted in schools across the nation. One child has an an allergic response to peanuts, so peanuts and nuts (peanuts are actually a legume) are banned from the school. Sorta like guns. Consider this: many children are chemically sensitive, as are many adults. When exposed to noxious chemicals, such as perfume, these individuals may display unruly behaviors. Can we ask the teachers to please stop wearing perfume?