Early Inklings

I already had an inkling of my daughter Rina’s uncrushable spirit at one week of age, as I watched her struggling to turn her head from side to side. Gone was the lethargic figure I had beheld in the hospital. As she grew older it was obvious that the so called “typical” profile of children with Down syndrome being “laid back and easy going” just did not apply to her. At around age two, I took her to the “International Center for the Enhancement of Learning Potential” (ICELP- Feuerstein Center) in Jerusalem, requesting ideas on how to best work with her. While there, Rina attacked the papers stored on the lower level of the evaluator’s desk, gleefully spreading them across the floor. I was told that there is a significant number of children with Down syndrome who have a tendency to the “hyper” side, and that Rina obviously fell into this group. However, she added that the question of whether Rina had ADHD or not would need to wait several years, and was not important right now. The good news, I was told, was that these children tend to be very curious, and thus easier in some ways to teach. (Just to show how discouraging negative viewpoints can be, the next day I had an appointment at the local child development clinic. There Rina also proceeded to turn the office upside down. The doctor looked on, and said in a solemn tone: “ I do not like this hyperactivity. Does she have any hyperactive siblings?” I felt crushed, and only avoided feeling extremely discouraged because of the upbeat attitude I had encountered the previous day at the ICELP.)

The age of “the great escape”

From age two to four, Rina advanced quickly both physically and mentally. She was very active, on occasion doing daredevil antics that made my heart tremble, yet simultaneously striding forward in cognitive achievements. Between ages three and five, she became an expert in “the great escape”: slipping out of playschool, or exiting the house (often in various states of undress). Usually she didn’t get too far, but on occasion she did cross busy roads. Thus each and every escapade was a heart-stopper for us. We quickly learned (even her siblings) to always lock the door. I also tried in various ways to “label” her with our address and phone numbers, by way of necklaces, watches, and tags. At the time though, we didn’t consider her a child with ADHD. She was simply impulsive with a “spunky” personality.

Behavior Problems Emerge

As Rina grew older (ages 5-7), her natural love of learning seemed to decrease, and she became very adapt at using avoidance techniques. She also loved getting attention, and used negative behavior to obtain this. She continued to study well with me, but was able to wrap nearly all of her therapists “around her finger.” Therapist after therapist found her extremely difficult, if not impossible, to handle. I started being picky about the personality of new therapists, choosing those who I thought would not let Rina “get away with murder.” And while she would study with me, she tried my patience whenever we were outside of the house, continually “acting out” in stores and on buses. It also became obvious by age six that her problems with toilet training were behavioral. (She was trying to get attention by having “accidents”) A few therapists mentioned the possibility of ADHD. However, I was sure that this was not the case, as I was able to study well with her. I saw the problem as purely behavioral. Slowly I started using behavior modification techniques with Rina. She earned prizes for not tapping people on the back when we traveled by bus. She received no attention (well, almost) for toileting accidents. I found a tutor for “preparation for first grade” who was friendly yet exceedingly firm. In addition, I tried to ensure that Rina was in bed on time every evening, as lack of sleep also seemed to be a trigger for negative behavior. An operation to remove her adenoids, correcting sleep apnea, seemed to help her behavior for a while.

Nearly diagnosed- but not quite

At this time I was battling for an inclusive placement for Rina for first grade. One morning she was evaluated by staff from the local school system. Rina actually behaved very well, knowing that “first grade” was at stake, and they were impressed. However, the tester mentioned to me that Rina would “lose contact” every few moments, and needed to be brought back to the task at hand. She recommended that we see a neurologist. I considered seriously for the first time that Rina might have ADD (or ADHD). By now Rina was nearly eight years old. The neurologist we contacted recommened a test. He prescribed five milligrams of Ritalin each morning, for three weeks. We saw absolutely no difference in her behavior, and dropped the idea of ADD/ADHD. My belief that most of her problems were behavioral was reaffirmed in my eyes. While today I still see behavior management as the primary need that Rina has, I also realize that at her weight, this initial trial of medicine was “too little and too short.” As the school year started, Rina turned eight. No school in our area was willing to include her, and the city education services did not give us a placement. As I continued to fight for my daughter’s right to an inclusive education, I hired a private teacher and sent Rina to “first grade” three hours every morning. This teacher was excellent, handling Rina’s misbehavior systematically, and encouraging Rina to have a positive outlook towards her studies. She taught Rina that it’s OK to say, “I want a break.” But she also taught her that it is OK to stretch oneself for five more minutes before that break.. We taught Rina about her disability, and allowed her to say that something was “hard.” She also learned the concepts of “trying hard,” “succeeding,” and “satisfaction.” However, in spite of all these positive developments, Rina became obviously more distractible and hyperactive. We also had several incidents where she “disappeared” (escaped), even after turning our backs on her for only a moment. These escapes did not seem to be calculated behavior, but rather sudden impulses on her part.

Medications

As the situation worsened, I went to our pediatrician, and requested a re-trial of Ritalin, but at a bigger dosage. We tried seven and a half milligrams daily, and quickly upped the dose to ten milligrams each morning. At this point the effect of the Ritalin became obvious. Her impulsiveness decreased, and her ability to concentrate improved. The proof was those rare mornings when I would forget to give Rina her pill, the teacher would invariably comment, “I don’t know what got into Rina today…” or she would call and ask if we had forgotten. I think that it is important to note that we are not giving Rina the medication to control her behavior per se. We give her the medication as a tool to help her concentrate and filter out distracting stimuli. This gives us a chance to teach her the techniques needed to overcome himpulsiveness, to see beyond this moment, and to relate to her studies as a productive, positive experience. The next year we obtained an inclusive placement for her, and at first Rina did very well. We tried varying times and dosages of her medication, in an effort to cover the entire school day (to one-thirty pm). The problem was twofold. First, was the fact that the Ritalin only covered a four hour span. Even greater was the problem that the “rebound effect” as the medication wore off was quite pronounced in Rina. At times we felt that the rebound effect was worse than Rina without Ritalin at all. (The month that the rebound effect hit her at eleven thirty A.M. I was afraid that we would lose her inclusive placement). In addition, her behavioral problems increased as the school work became harder for her.

As she neared ten years of age, I had Rina evaluated by a neurologist who is not only expert in ADHD, but in ADHD coexisting with other major difficulties. In addition, she is also very pro-inclusion. This evaluation was stretched over several visits. Both the teacher and I had several forms to fill out describing Rina’s behavior, and Rina was tested by the neurologist. In addition, a computerized test to check her impulsivity and her distractibility was done. This test was even repeated, with a slightly increased dose of Ritalin, to see if a larger dose would be significantly helpful. We received a “definite” diagnosis of ADHD. Even though Rina is not terribly hyperactive, her impulsivity, belligerence, and distractibility clinched the diagnosis. (Impulsiveness, belligerence, and distractibility are also markers of ADHD, no less than the hyperactivity which people are more familiar with). The doctor recommended a higher dosage of medication for Rina (partly because of her above-average weight), and a switch to a medication called Concerta.

That solved Rina’s “rebound” problem, as she does not experience it with the Concerta, which tapers off more gradually than regular Ritalin. In addition, the twelve-hour dosage solved the logistical problems of in-school dosing. It also covered the afternoon and early evening hours, which made life much more pleasant at home (and at homework time!) for Rina and for everyone else. (An aside about swallowing medication: We had previously taught Rina to swallow her thyroid medication and her Ritalin tablets with water, with varying success. With trepidation I viewed the large “forbidden to chew” Concerta. I found that with a spoonful of yogurt, Rina was able to swallow it without problems.)

Educational modifications

However, the correct medication was only a partial answer. In addition, we needed, and succeeded, in working out a better program for Rina at school. We gave her more frequent breaks, and more one-on-one preparation for harder subjects. We switched the prize for good behavior to something she wanted: computer time. These all helped Rina considerably in controlling her behavior. It must be noted that while we saw an immediate improvement in her behavior after rearranging her schedule (within a week), things did not become perfect. Unlearning negative behavior is a slow and difficult process. In addition, any tension at home, lack of sleep, or having a “substitute” aide would make the day trying for Rina, and she would have difficulty behaving. I would love to be able to claim that Rina’s behavior is well-controlled, but this is unfortunately not yet the case. However, we have made great strides in managing her behavior. For example, Rina has always hated leaving class with the aide for one-on-one instruction, preferring to be with her friends. She would often throw full blown tantrums on being taken from class. We recently succeeded in gaining her cooperation in leaving class, but only with a food prize promised at the end of the day. She is still very sassy, impulsive, and at times downright ornery. (As she is now 11, I would not be surprised if some of this is due to her nearing the teen years.) She is also smart (knows just what she wants!), loving, and self-aware. And she is definitely trying to be more cooperative.

We are trying to develop in her a realization that independence and friendship go hand in hand with responsibility and respect for others. The other day a fawning stranger said of her, “Oh what a doll!” I smiled and said, “That’s not exactly how I would define her.” Loveable? Yes, definitely. Smart and sensitive? This is surely true. A cute, quiet, passive doll? Well, Hardly.

Mrs. Palatnik lives in Israel, and is the mother of a large family, including Rina. She is active in the local DS support group, and by profession is a registered nurse ( not working at present). The author may be contacted at: pruth@zahav.net.il ”Our Flight with Rina” was originally published by Down Syndrome News and Update - Down syndrome Educational Trust, England Volume 3, number 3.

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