Blogging for Kids with Disabilities Day: My Lil' C
For eight hours every weekday, I experience a mild anxiety. This has nothing to do with work or the other minutia of life. It has everything to do with my cute, cuddly, smart and funny nine-year-old son, Lil' C.
He appears to be a normal, happy, active boy, falling well within the normal physical and intellectual parameters for his age. But if you look closely, you see he is twitchy - he scrunches his face for no apparent reason - fidgety, prone to tantrums, often distractible, and neglectful of details. He has ADHD, diagnosed just this spring, and a mild OCD. The signs were apparent last year and even before, brought on by stress, yet somewhat manageable with behavior modification (before his diagnosis). However, his behavior in the classroom worsened last year, becoming disruptive to his classmates on a large and small scale. He has the aforementioned signs and symptoms plus a history of explosive behaviors that seem to be provoked by changes in schedule, or when other people don’t follow his perceived rules. Oh, he also has a tic disorder that is somewhat exacerbated by his medication. Along with behavior modification, he is being treated with a stimulant, Strattera. We switched to that one after an increase in his first med, Adderall XR, made his facial and hand tics worse.
But I worry about him when he’s not under parental or grandparental control, when he’s at school or day camp. I worry about The Call. “Lil' C is in the office, crying, inconsolable.” Or “Lil' C lashed out at another child during recess.” These calls came a few times last school year and during the past summer. During these meltdowns, he can get very angry and hit himself. I feel bad for the teacher who takes time out of a jam-packed schedule to attempt to calm my son.
He gets very upset if he perceives that other children are not following rules and will attack them, yelling at them, and rarely hitting or kicking. I’m mortified when that happens because Lil' C himself has been a target of bullying at school, and it makes me angry when he is physically attacked or gets in trouble for something a bully has instigated. After a meltdown, he expresses regret, but he does not appear to feel guilty.
We like to give him pep talks before potentially tantrum-inducing situations, reminding him that change might happen at any time during the day or rules of organized sports aren’t likely to change in mid-game, so keep a cool head please. If he does have a meltdown, then later we discuss the details in the peace and calm of home and strategies he has available to prevent future meltdowns if faced with a similar situation.
Lil' C’s tics are another source of anxiety for me. He has a friend, X, afflicted with ADHD and Tourette’s Syndrome. X was treated with stimulants before his diagnosis of Tourette’s, so his notable, distracting tics - repeatedly hitting his elbow on his desk, among others - were only made worse by the med. He spent a lot of time last year in the principal’s office because the teacher found his behavior distracting to the other students (it wasn’t known he had Tourette’s at the time, and the teacher thought he was purposely acting out). To make matters worse, classmates made fun of his tics, something he has no control over. Diligent research on his mother’s part led to a pediatrician who specializes in spectrum disorders (ADHD, autism, Tourette’s, etc.). Now X’s tics are almost entirely gone, and his ADHD signs and symptoms are greatly diminished due in part to a multi-faceted regime of non-stimulant meds, dietary supplements and other treatments. He can sit still and concentrate on the task at hand in class. And the kids don’t tease him about his tics anymore. But I worry that Lil' C will be teased about his, even though he reports it has never happened.
So now the good news: I haven’t received The Call yet this year. Nor any e-mails complaining about Lil' C’s classroom or playground behavior. When asked about his day, he cheerfully answers, “Good.” Meltdowns? No. Teasing? Nope. Distracting behaviors? Nada. Trouble concentrating? Nyet.
And more good news. Since X has made remarkable progress with his treatments for ADHD and Tourette’s, we have decided to seek treatment for Lil' C from X’s pediatrician. For the moment, we are maintaining the stimulant medication because it works, allowing him to concentrate in school and control his fidgety urges, too. His tics are minimal, and another side effect, appetite suppression, is a mild factor for our naturally slender son.
Best of all, he is still the same sweet, quirky child we know and love; the med didn’t turn him into a zombie or change his personality. In the near future, we will be initiating an additional alternative treatment, EEG neurofeedback. The following is taken from the pediatrician’s website.
Cygnet EEG neurofeedback system (www.eeginfo.com/cygnet) offers significant advantages over previous systems, with better signal/noise filtering, 2 channel inputs, more effective protocols, and great new games for the kids to play. EEG neurofeedback allows users to train their brains to be more focused, calm, and effective by translating changes in brain waves into visual images and games. Simply by sitting and looking at the screen, the user reinforces brain patterns associated with improved neurological function. In one randomized trial, EEG neurofeedback was as effective as medication in relieving symptoms of ADD, and the improvements were maintained months after the therapy was stopped. It also appears to be effective in relieving symptoms in autism, although this patient population has not been as well studied.
Lil' C thinks he is playing a video game, but he is training his brain to be more focused, less distractible. X has benefited from this therapy, according to his mom. She reports he is more focused at school, and he is a happier child, less likely to have an outburst when there is a change in schedule. The therapist/psychologist said results are apparent after twenty sessions. Lil' C will begin EEG neurofeedback when one of her current patients discontinues treatment, and there’s an opening in the schedule for sonny. Other treatments to consider include blood tests for antibodies to foods, streptozyme and basic metabolic tests, possible restrictive diet, supplementing with amino acids, and the medication Tenex, a high blood pressure med (alpha-2 agonist) that is very helpful for tics and also for hyperactivity.
Insurance doesn’t cover EEG neurofeedback therapy and it only covers half of his name brand medication (no generic Strattera, yet). Most of his treatment for ADHD is an out-of-pocket expense, yet I feel fortunate that, thus far, we have had the means to provide it for him. I’m aware that parents without health insurance and fewer resources are faced with very difficult decisions.
I don’t care what it costs to make him feel better about himself; I’ll gladly pay the fees, or commit to weekly appointments, whatever it takes. Then maybe I won’t feel so anxious on a daily basis. No, on second thought, I’ll probably worry about the garden-variety minutia of my everyday life instead.
Links to more blogs for kids with disabilities:
tamela_j
juniperus
Cis_Masque
SabreBabe
sonoran-mamma
tudorpot