CAN ANYONE WITH DS LEARN TO READ? WHY? WHY NOT? WHAT INFLUENCES THAT ANSWER?
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.
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:
- Undiagnosed autism/ASD/other diagnoses
- Undiagnosed vision issues
- 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. So let’s look at those over the next 4 weeks. Today we’ll start with Block #1, undiagnosed autism/ASD.
Block #1: undiagnosed autism/asd or other diagnoses
I see this the most. Parents come in with a child who exhibits autism from the very first interaction in our session; yet the parents had been told by medical personnel, “It’s just Down syndrome. It’s typical; we expect that,” when the child was actually struggling with a secondary diagnosis and needed special help, including ABA therapy. I’ve written about this and given examples of parents who had experiences meeting this brick wall in the book Down Syndrome Parenting 101(see Chapter 19, starting on page 152.)
From that book, I’ll quote one of the dads to clarify the importance of getting an accurate diagnosis. Rob is the father of a girl with DS who survived rare brain tumors. Early on, the parents suspected something wasn’t right and sought medical evaluation. Rob said, “It’s easy to fall back and say it’s just Down syndrome, but it’s not always. You do your child a disservice by defaulting back to the ‘Down syndrome’ position. It’s a process of trial and error; you’re constantly probing. It’s a process of elimination, and you will end up being the expert. Even going to the ‘top of the top’ doctors, we found they had formed very strong biases based on just one or two cases they knew about! So trust your gut.” And I would add these words of advice from the mom of a child with DS/ASD: “If your child is exhibiting behaviors that don’t match up with those of his peers who also have Down syndrome, think about it. Have it looked into. Don’t assume that you know what autism is. Just because your child is not ‘Rainman’ doesn’t mean that he doesn’t have autism.” (Down Syndrome Parenting 101, pg.153.)
Autism trumps Down syndrome. Period. So we need know if autism or ASD is in the mix; if so, we “teach to the autism.” I am backed up on this view by the Sie Center for Down Syndrome at Children’s Hospital Colorado, which specializes in the diagnosis of DS/ASD. I can also vouch for that from my experience of teaching students with that dual diagnosis: we teach to the autism.
When parents walk into my room with a child/teen who exhibits strong ASD behaviors and has never been evaluated by someone who specializes in that and other diagnoses which can co-occur with Down syndrome, I direct them first to an evaluation with the goal of not only getting an accurate diagnosis, but also getting ABA services. ABA will impact the learner across the board in all environments: home, school, therapies, etc. So if you have a “gut feeling” that something else is going on, that can certainly derail learning to read. Get that clarified first!
Next week we’ll talk about Undiagnosed Vision Issues…the hidden culprit!
See you then,