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.

Who am I?

Isabella recently stated that her school was different. I was surprised that she verbalized this fact. I thought, wow, this is great. Isabella knows who she is. She pointed out that her school had a large, grassy area. Yes, that’s different from your brother and sister’s urban schools. But that wasn’t exactly what I was expecting to hear. So, I told her that her school was for children with learning disabilities. Quite indignantly, she replied, “I don’t have a learning disability.” My first thought upon hearing this was: she has no idea who she is. When I told the story to a parent of a child in Isabella’s school, she had a very different reaction. Her’s was: she has self-confidence.

Okay. Those are two quite varied thoughts about self-awareness of a special needs child. Right? Well, maybe not. Maybe, the views are alike. Does she have self-confidence because she does not know who she is? Or, does learning in an environment with children who have similar abilities keep you level. The playing field is level. Children who go to school with varying abilities always know who the kids are who get the best grades, as well as those who get the worst. There are a lot of comparisons. And the comparisons don’t end there. Kids rate looks, clothes, humor, popularity, athletics, weight, body type, and so much more. Isn’t it okay for all girls to believe they are pretty even though they all look different? What’s wrong with a kid who didn’t make the varsity basketball team, but thinks of himself as a great basketball player? Nothing.

Kids need to value themselves for who they are. Period. Not as compared to someone else. Self-confidence derives from valuing yourself, not from valuing someone else. Child psychologists, teachers, parents all say the same thing. More than anything else, self-confidence is the most important value to confer on your child.

I’m feeling good today as a parent of Isabella!

Santa: is he still coming?

When my older daughter was 10 (I’m guessing), she said, “Mommy, I have something to ask you. I want you to tell me the truth.” Okay. “Is there any such thing as Santa Claus?” I answered her truthfully. Her response, “You’re lying.” Once again I am faced with a child and the reality of Santa. But the difference is that this child, Isabella, still believes in Santa. She’s 13. She needs to be told. Many children with learning challenges are exceptionally gullible. Often adults need to step in to set things right. No parent wants to see her child being taken advantage of. It really stings. So one day in the car recently Isabella mentioned something about Santa. I just came out and told her. She took it well. She didn’t say that I was lying. A few days later she mentioned Santa again. I reminded her about the truth. Yes, she remembered our conversation, but she was worried. Would she still receive presents under the tree if there was no Santa. Ah, perhaps the reason why some children believe for so long. Now that’s thinking!

Using language

Another milestone of sorts, not the kind that most parents mark, however. While dining at Fork in Philadelphia (highly recommended), Isabella provided a possible glimpse into her future. While eating — she duck, me risotto, her dad branzino, our companion hangar steak — Isabella proclaimed that she had developed a rating scale for restaurants. One was for terrible, two was for okay, three was for good, and four was for excellent. The rating encompassed service, as well as food. Our evening at the highly-acclaimed Fork was nearly demoted to a three when I had to ask for a red wine refill twice. All was restored when Fork’s owner delivered my vino. This is a sophisticated use of language in a conceptual way. It’s all good.

Today we made our way to the Reading Terminal Market. (I did not care for it when I visited a few years ago, but I thought I’d give it another try.) We were starved because it was eleven am and we hadn’t eaten. I spotted a diner that I heard mentioned on NPR because a celebrity couple dined there. Okay, if it’s good enough for the rich and famous, Isabella and I should be satisfied. My oatmeal was room temperature, clumpy, overcooked and enough for four. We’re not certain what Isabella was served. So my daughter came up with another rating — zero for it sucks.

Hair brushing

Hair brushing most definitely should not require window closing least the neighbors call the police. At our house this could possibly occur. Call it sensory issues or waiting too long to brush hair. It is a major ordeal. So we put it off. And it gets worse. It’s as if she has a gun shot wound. The screaming is loud accompanied by,”Stop it mommy. You’re hurting me.” Without the visual, that doesn’t sound good. So we avoid hair brushing. We have alternatives I suppose. Shaving the entire head or sound-proofing the house. We’ll probably just stick to putting it off.

Traditional treatments

We never actually experienced the shocking news of  a diagnosis for Isabella. Stuff was revealed gradually, which was not necessarily a good thing. There was no call to action. With each step forward, there were two steps backwards. Therapies were traditional in nature. Nothing out of ordinary was considered. An error in thinking. Though Isabella still has appointments with the same speech language pathologist and occupational therapist who she has been seeing since age 4, a lot more is happening at the cellular level. Sounds interesting, doesn’t it?

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?

Hello world!

Ever wonder what’s it’s like to raise a child with apraxia, autism, ADHD? Probably yes if you have a child with a challenge or you know someone who does or if you’re a therapist who has dedicated your life to these children. Well, I am both of these people — a mother to a child and a nutrition practitioner. Follow me on my journey of healing my daughter, Isabella Speranza.