PART 4: CAN ANYONE WITH DS LEARN TO READ? DEALING WITH NONCOMPLIANCE

When the child rules and the parent is exhausted…

Note: If you already read my previous articles “Parts 1, 2, or 3,” skip down to *NONCOMPLIANCE. If you didn’t, read this first part (in italics) because you need this initial information!


When parents ask me, “How long will it take for my child/teen to master this reading program? 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 I’ve encountered in teaching…

You

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 reader-friendly instruction (including the Whole Child Reading book). As far as time commitment goes, 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

 Last week I wrote about the third block, undiagnosed ADD?ADHD. Today we’ll continue with Block #4.


 

*Noncompliance: Lack of early training in at least a minimum of compliance

I said “early training.” If you didn’t start early, start NOW. Now is so much better than never, I can’t tell you.

As the mom of a child (now 34) with Oppositional Defiant Disorder (ODD), ADHD, and Down syndrome, I thought I was a near-expert in dealing with noncompliance. That was before I began teaching reading to learners of all ages with DS. My repertoire expanded!

In my book Down Syndrome Parenting 101: Must-Have Advice for Making Your life EasierI’ve written about many techniques for dealing with our kids with Down syndrome who are noncompliant and can easily outsmart us. Why did I cover so many ways to deal with this challenge? Because our kids can quickly figure out what we’re doing, block that technique, and we have to find a new way to train them.

Train? Yes, train

Do NOT be afraid of that word. It can be exhausting for us to be consistent and hang in there until the lesson is learned and the behavior is modified, but our kids are never going to survive well in the world without learning to behave. Take your vitamins with a double espresso and forge ahead.

Take a look at Down Syndrome Parenting 101 where I’ve devoted two full chapters to noncompliance. (Chapters 13 & 14: “Born to rule” and “The noncompliance face-off”).

Best advice, besides taking a look at those methods? Be consistent. Don’t cave. Take care of yourself so that you can last. I think among the sweetest words ever said to me were spoken by one of Jonathan’s caregivers (he lives in his own apartment with rotating caregivers) who noticed how the mere threat of “calling mom” had an immediate effect on his compliance: she told me afterward, “Good job, Mom!” Those first 16 years or so were worth the struggle!

An example: James (not his real name)

I’ll give you an example showing how ignoring noncompliant/inappropriate behavior can be a huge stumbling block. Here’s one story…

A new student came to me recently, age 5. I’ll call him James. Down syndrome but no secondary diagnosis…yet. (He had not been evaluated.) I could tell that he was bright, and his parents told me that he absolutely loved books. But…enter the Wild Man. He was all over the place, throwing things, spitting, completely noncompliant and out of control.

James had never been to preschool or any daycare, and when his parents did try to put him in a classroom situation, his teachers could take only 5 minutes of his presence before calling his parents. “Come get him.”

I observed him and looked for any suspected undiagnosed problems, but it wasn’t clear yet. So I began to work with him. In all my teaching, I try to attune with the learner, to intuit what he can or cannot do or understand.

the immoveable force

I sensed that this child was bright, so I had high expectations of him. I became The Immoveable Force. I put up with zero behavior from him. A super-firm, “You don’t do that in here!” became my mantra. He looked surprised. Did he test me? Of course. Was I as flexible as a brick wall? Guess.

What I learned eventually was that he had no idea how to behave, no idea what learning was about. He had no idea what was expected of him, not even how to play a simple matching game even though I walked him through it several times. As he finally understood what I wanted him to do, his interest came alive and he placed the card on the correct part of the board instead of throwing it wildly in the air.

I felt that this boy had been bored out of his gourd and acted out because he had no idea what else to do. He had no training. His parents chased him chanting, “No, no, no!” while he did exactly as he pleased.

Did I recommend that he get a qualified evaluation? You bet. Let’s find out what’s going on here.

remember the “Dog whisperer”?

I used to sometimes watch Caesar Milan on his “Dog Whisperer” show. Of course he trained the dogs, but to my surprise, he gave even more emphasis to training the dog owners. As I watched James’s parents futilely run after their child, as they had for 5 years, without him paying them the slightest attention, Caesar’s methods came back to mind: it’s the parents that need training as well as the child. They feel helpless and frustrated and have no idea what to do. “The definition of insanity is doing the same thing over and over and expecting different results.” (Says Al Einstein.) If it’s not working, you move on and try something else. Get help.

ABA for down syndrome!

What if everything you’ve tried isn’t working? Enter ABA therapy (Applied Behavior Analysis).

Finally, finally we understand that this therapy, which has been so helpful for individuals with autism, can also be highly effective for our learners with Down syndrome. My publisher, Woodbine House, has a brand new book out on that very topic: using ABA to teach and train children with Down syndrome.

If you’re struggling with noncompliance or other behavioral issues, explore the possibility of having a qualified evaluation done and requesting ABA therapy for your child. It can be transformative.

Thumbs up for courage and compliance!

 

 

 

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