Part 3

Note: If you read my previous articles “Parts 1 or 2” already, skip down to *UNDIAGNOSED ADD/ADHD. If you didn’t, read this first part (in italics) because you need this initial information!

Parents often ask me, when they use my Special Reads curriculum, “How long will it take for my child/teen to master this? And can he learn to read?” The answer is twofold: that depends on the learner, and that depends on you. The “you” part of it is fairly simple; the “learner” part is more complex, and there are 4 possible stumbling blocks…


The “you” part of it is straightforward: how much effort are you able to give to this, and are you willing to learn how to teach it? The Reading Bundles on my site come packaged with plenty of instruction, and I’ve made that instruction reader-friendly (including the Whole Child Reading book), but you’ll have to set aside time to read it! As far as teaching time commitment goes, that’s not much to start with: my “reading prescription” is 5 Minutes 2x a Day for emergent readers. That’s it. The time stretches gradually with success and enthusiasm.

Your Learner

The “learner” part of it is more complex. That involves personality (of course), interest/lack of interest in books, age, and secondary diagnoses, if any. Here are the often hidden stumbling blocks I’ve encountered with my students:

  1. Undiagnosed autism/ASD/other diagnoses
  2. Undiagnosed vision issues
  3. ADHD
  4. Lack of early training in at least a minimum of compliance

In my Whole Child Reading workshops focusing on teaching reading to learners with DS, I say at the outset, “Meet their need and they will read.” Then I go about explaining how to do that; but I also talk about 4 stumbling blocks. Last week I wrote about the second block, undiagnosed vision issues. Today we’ll continue with Block #3, Undiagnosed ADD/ADHD.

*Undiagnosed ADD/ADHD

This 3rd possible block is probably obvious, though not always. Too often children who need the therapeutic help from getting either an ADD or ADHD diagnosis get missed because an evaluator will  simply say, “It’s just Down syndrome.” Well, I’m here to tell you that it’s not just DS. 

Having a nephew who had severe ADHD, I was alert to signs of the same when my son Jonathan (DS) was only 3 years old. In dealing with her son’s ADHD, my sister had discovered the Feingold Diet for Hyperactive Children, a diet which eliminates all artificial additives (colors, preservatives, etc.) as well as naturally-occurring salicilates (tomatoes, many fruits, etc.). It worked for her; my nephew was in control unless he ate off diet. So I tried it with Jonathan; we had moderate success with that, but coupled with Down syndrome, his behavior was out of control by the time he was 7.

a qualified evaluation

Enter help in the form of Dr. Bonnie Patterson! Those of you who’ve been on this road for decades will probably recognize her name, as she was a frequent speaker at conferences. To our great fortune, Dr. Patterson was on the medical staff of the Down Syndrome Center at Children’s Hospital Cincinnati, where we lived.

We brought Jonathan to her doorstep for what we knew would be a qualified evaluation. Dr. Patterson knew the difference between what I call “Plain Vanilla Down Syndrome” and DS + something else. She and her team put Jonathan through a multidisciplinary evaluation which took several weeks with various therapists.

The cattle chute

Now, I want you to contrast that with the recent experience of one of my students and his parents in Los Angeles. I encouraged them to have him evaluated for possible apraxia (in my experience, it was severe for him) and autism/ASD. This child spent 30 completely uncooperative minutes with a developmental psychologist who pronounced him just fine except for Down syndrome, recommended group speech therapy at school twice a week, and showed them the door. In the dad’s words, “It was like a cattle chute.”

That is not, I repeat, not, a qualified evaluation. Please don’t settle for this! Too often we, as parents inexperienced in the new world of special needs, accept the word of the professional, whether or not the professional has the background to make an accurate assessment.

we Got the diagnosis!

But back to Dr. Patterson…when we met her and her colleague some weeks later to hear their assessment, we got the verdict. “Jonathan has very severe ADHD, and it is impacting his life across the board much more than Down syndrome is.” She added, “He also has Oppositional Defiant Disorder (ODD), which we see in perhaps 40% of cases of ADHD with Down syndrome.”

Now I knew what was going on. That’s the benefit of getting a thorough eval, even if it gives your child a new label. You’re already dealing with the problem; what difference will it make to know what it is? Plenty. Knowledge is power, and knowledge leads you to information and solutions. So for the next 5 years, I shifted gears. My focus was ADHD, and Jonathan benefited from it enormously. Behavioral intervention (including ABA help) is recommended to help manage ADHD or ADD, and of course pharmaceuticals like Ritalin.

Why did it take 5 years? Because he couldn’t take Ritalin or the next category of possible drugs (we tried), and I had to research natural therapies. I’ll never forget the wide-eyed terror of the Sunday school teacher who had Jonathan in her class on his 3rd day of taking Ritalin. “Don’t EVER bring him in like that again!” Ritalin, in fact, shot his hyperactivity up, oh, I don’t know…300%?

what about ritalin?

Is that typical of kids with DS? I can’t answer that definitively, though I tried to in my book Down Syndrome Parenting 101, in the chapter “When it’s not Down syndrome,” (pg. 152). While I was writing that chapter, I researched online, looking for other experiences of Down syndrome + Ritalin. I found only one, and that mom had to race to the ER because her son’s ADHD escalated dangerously; the ER doctor assessed her son and remarked, “Don’t let him near a window until the Ritalin gets out of his system.” Whoa.

The other input came from a friend whose daughter with DS was hyperactive. She later told me, “You know, when you said you had Jonathan on Ritalin for only 3 days, I thought to myself, ‘Well, she didn’t give that much of a try!’ But with my daughter, we lasted only 2 days on Ritalin. She’s nonverbal, and kept pointing to her head and signing, ‘hurt!’ We panicked and took her off.”

Does that mean it won’t work for other children with DS? No. It might do the trick and be just what is needed. It just didn’t work for me or my friend–or the ER mom on the internet! The alternatives I found were off the beaten path, but they worked; we spent several years applying one, then the other when we phased out the first one. Here they are…

natural alternatives

(1) Castor oil hot packs to the abdomen daily [this was miraculous, but a lot of trouble; we did it anyway at bedtime for over 2 years].

(2) Bioharmonic tones listened to daily for over an hour (after regular assessment to make sure the tone was correct for him.) An outstanding memory during that phase: Jonathan was sitting on the sofa, headphones on, for his hour of listening to the tone from his tone box, quietly reading a book. A friend walked into the living room, looked at Jonathan and said, “He’s not hyperactive. Why did you say he’s hyperactive?” I grinned. “He’s not now.”

(3) The supplement DMAE, added to Jonathan’s daily vitamins from Nutri-Chem in Canada. (An alternative to Nutrivene, similar.) He’s still on DMAE at age 34 because it helps his moods.

don’t try this at home

Am I recommending that you try these things? No. I’m not qualified to make those recommendations, and they were a lot of trouble; your schedule is already overloaded. It’s just my personal history of trying to find a solution for my son, and my point is that Down syndrome with hyperactivity is not the same as Down syndrome. It’s just not. I felt so blessed to find an MD who knew the difference!

I had to shift gears when I learned that he had that diagnosis, as any mother needs to when her child gets a new diagnosis that trumps the original diagnosis of Down syndrome. As I wrote about in Part 1, autism trumps Down syndrome, and we teach and help the child with that knowledge in mind.

In the end, everyone benefits from this shift in focus: the child, the family, and the classroom staff.

don’t settle

I’ve said this many times, and here it is again for you: Trust your gut. Don’t settle. If you feel something else is going on, it is.

If you get together with other families who have kids with DS around your own child’s age, and if her/his behavior seems out of sync with the DS norm, given that there’s a broad spectrum in that “norm,” follow your gut and keep going until you get an evaluation you can trust as true.

it doesn’t have to delay reading

Even with his triple diagnosis of DS, ADHD, and ODD, Jonathan adored books and could read independently by age 9. But I knew what I was dealing with, and took measures to try to treat it. I was also lucky enough to get trained as to how to teach him to read. It was the perfect combination.

I wish you the absolute best success!






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