Ages and Stages, Therapy Tools, Tips and Tricks, Uncategorized

Will it work? How to choose a product/program for your child with Down syndrome

questionmarkBefore we go a further into feeding & children with DS, I’d like to pause with this post on how to figure out if a specific treatment is best for your child. Let’s say you walk into your SLP’s office and they are really excited about a continuing education course they’ve recently attended. They tell you all about it, thinking that the techniques would be perfect for your child. We’ll call the treatment X. After a session you think your 2-year-old with DS may be talking more. Excitedly you share this with your SLP. He or she is thrilled and recommends that you purchase Y so that you can do X at home. You agree even though the product is expensive because,

You will do anything to make sure your child is able to talk.

This is a common story. The therapist is well-meaning. The parent is searching for the key that will open communication. But the question remains; did treatment X really work? Was it maturation? Was it all the other parts of speech therapy that worked? Was it the supplement you started 3 months ago beginning to reach its full potential?

If you take a step back and begin to look hard at these questions it can be quite unnerving. I know. I’ve heard it. I’ve lived it personally and professionally. And after you take that step back, you have options:

A)     You plow ahead because anything that seems to work is worth it to you. You get on that bandwagon.

B)      You tackle these questions head-on, asking your therapist, physician, and friends what they know about X. (I know you. Googling has already been done). You want to know more before your sold on this. You are cautiously optimistic.

C)      You don’t say anything. Your therapist uses X in his/her sessions, but you can’t find the time to follow through at home. A few years later you donate Y to a new SLP confessing, “If you can use these, please do. If not, just throw them away for me.”

If you’ve been reading this blog for any length of time you know which option I encourage you to choose. (B! Pick B!)

Now that you’ve staring into the abyss of questions and doubts and hopes, what’s next?

Toolkit for Assessing New Treatments for Parents and Clinicians [1]

  1. Realize some degree of doubt regarding treatment claims is okay. Really. Even if “they” look at you like a crazy fool for not immediately buying in. First answer the nagging questions, then accept or reject what is being suggested.
  2. Find balance: learn to be open to new ideas while scrutinizing them. Look for compelling evidence* before you choose to believe the claims.
  3. Look for confirmation of the treatment claims by others outside of the treatment. In other words – research supporting the claims, conducted by those with no monetary interest in the product or program.
  4. Ask if the claims have been debated by professionals. If so, why? Remember treatment should be based on data that shows effectiveness. Unfortunately, there is little research in DS regarding specific speech/feeding treatments. However, many studies have included children with developmental disabilities or disorders common in children with DS. Some treatments have 1 study that support its use and 10 more that show it doesn’t work. It’s not personal; it’s fair. Look at all the evidence, not just the articles that support claims.
  5. Be wary of the following terms as it relates to specific products or programs: anecdotal evidence (In my own practice…, my child starting speaking after using X), case study, expert opinion, authority, guru, testimonial, etc. While these terms can be convincing at first, they should lead you to…more questions. Don’t despair AND don’t end your search here!
  6. Is it too good to be true? One technique cannot possibly be good for all children or all disorders. It’s more likely that the treatment is not as effective as claimed. I illustrated this with two pictures side-by-side of a little girl with DS in a presentation at the 2011 NDSC Convention in San Antonio. The first she had her tongue protruding, the second it was in her mouth perfectly. The technique? Nothing. Just an instant later with the same camera. You can’t believe everything you see.
  7. Facebook Frenzy. Has is caught a lot of attention online? Is it showing up in your Yahoo! group, or Facebook news feed? This should be processed as: proceed with caution. Just because someone claims a treatment works online, in the popular press (like a parenting magazine), or TV show doesn’t mean it’s going to work for your child. Remember a couple of years ago when a child with Autism was shown using an iPad with a specific type of app? Do you know how many families have come to our clinic requesting that app? Unfortunately, it’s not the best fit for most children with DS. *Evidence comes from peer-reviewed journals where researchers discuss their studies. Self-published books or trade magazines (Advance) are not included as evidence.
  8. Pseudo-scientific jargon AKA words meant to sound scientific. Be aware that most treatments/products/programs won’t sound absurd. They are well marketed and use terms to make customers (that’s what you are) believe claims. Ones I’ve heard include strengthens muscles in children with hypotonia (low tone), improves tongue retraction (When? For how long? For what?), brain based program, etc.

Phew! That’s a lot to digest. So, I’ve put it in simple terms on this worksheet for you.

Ultimately, the decision to use a specific treatment is up to you. Even if you find out it’s beneficial in DS, that doesn’t mean you have to use it. Keep in mind that any program has to fit within the boundaries of your family in terms of:

  • Cost – Do not, I repeat, do not break the bank to purchase a must-have product(s)
  • Duration – How long the program is needed
  • Intensity – How frequently is the product used
  • Reality – Are you ready for the commitment now?  What barriers exist that may prevent you from following through with the program? If not now, could you manage in 6 months?

Whatever you do, do not buy into a product or program out of guilt or desperation. It’s not worth it. Weighing your options wisely will give you peace of mind now and in the future.

References

[1] Lof, G.L., & Camarata, S. (Nov., 2011). Clinical science: Distinguishing fads, myths, and evidence. Seminar presented at the National Convention of the American Speech-Language-Hearing Association, San Diego, CA.

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6 thoughts on “Will it work? How to choose a product/program for your child with Down syndrome”

  1. Thank you so much for this post! I am starting to feel so much pressure (which I have been putting on myself). I have been feeling like I am not doing enough and I am feeling so lost when it comes to helping my daughter with her learning to talk. I have been looking online at “products” that are there to help with her learning to speak. They are not cheap. I am still researching as I don’t want my panic to be the reason for buying.

    1. Right – Don’t buy out of panic. Take a deep breath! I will post on some well-researched ways to improve speech in the near future.
      Best to you Anna!

    1. Thanks Joan! It is ALWAYS hard as a parent. I can’t give you enough credit. When you’re on the inside it’s difficult to see the forest for the trees. And in DS/ASD there are so many voices adding to Mommy-guilt, “Are you doing such and such with your child?”
      I am thankful for professionals like yourself who try and offer balanced, practical tips on real life.
      Thanks for your continued support! Jenn

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