Oral Therapy

InsideSMA is proud to announce the guest author for this Parents Point-of-View segment on Oral Therapy.

Brad Fisher is an SMA father and is widely respected by the SMA community and is one of the top SMA Oral Therapy subject matter experts.

Visit Brad's website: www.asonginthisworld.com

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The Benefits of performing oral therapy are many. Stimulating the facial muscles and getting them to fire will give your child more of a chance to increase or at least maintain range of motion in their jaw. For infants that are pre teething oral motor therapy will help your child transition through the teething stage easier because you will be stimulating the gums cutting down on teething time.

Because the average SMA Type 1 child can’t chew the teething process is prolonged and one of the main benefits I have observed is that teeth cut through more quickly and also come out more quickly than children that aren’t receiving oral therapy. It’s my opinion also that stimulating the facial muscles and moving the jaw simulating what the jaw does while eating will only increase your child's ability to manage their secretions. Also stimulating the facial muscles will keep what is there firing and allow your child to maintain or increase the muscles used to express themselves like smile!

"stimulating the facial muscles will keep what is there firing and allow your child to maintain or increase the muscles used to express themselves like smile!


I have done a lot of research over the years since Shira’s diagnosis and my philosophy is based on what injured athletes and astronauts receive in terms of physio therapy. Therapy given to your child once every 2 weeks is not going to do much if anything for them. Muscle has memory and like working out the more consistent you are delivering oral therapy, CPT and physio the greater the benefits are going to be.

It’s important to work with your Speech Language Pathologist and have them train you and improve your technique. Don’t forget that even the professionals have to constantly upgrade and learn new techniques. It’s important to go slowly and never force any therapy and injure your child.

"It’s important to go slowly and never force any therapy and injure your child."

Keeping a log book after each session and recording all the positive and negative changes you observe is also a good idea. Remember that performing oral therapy isn’t the end all.

 

It’s also important to let our kids suck on flavored tongue depressors, taste flavored tonguefoods, and amplify their voices using a personal voice amplification system like a Reizen or Voista system so that they can develop what Non intervention in fatal illness becomes a self fulfilling prophecy voice they have through vocal play etc. Intervention is key at every level when dealing with SMA as Dr. Bach says, “Non intervention in fatal illness becomes a self fulfilling prophecy.”


For the first 4 years of Shira’s life I dreaded what the future would bring in regards to how it would physically change her body. I pressured my Occupational Therapist and our Physio Therapist to give Shira a lot of attention but they didn’t have the time to deliver much care.

So I trained myself so that I could deliver Shira’s physio therapy as well as researching all devices etc. that would improve her quality of life.

The years were going by and as time went on Shira’s face was being neglected. I realized there was a huge disconnect between the Speech Language Pathologists and Ot’s and PT’s. The reason for this is the face is the domain of the SLP and the OT’s and PT’s do not tread in this territory.

"I realized that her taking a soother was imperative to keep the jaw open"

pacifier

Long before I started performing oral therapy on Shira I realized that her taking a soother was imperative to keep the jaw open. Luckily Shira has always relied on soothers to help her equalize the pressure of her bipap. The soother works as an orthotic keeping the jaw open increasing Shira’s range of motion. Because she is on bipap around 12-16 hours per day this has helped keep Shira talking.

Still I was searching for answers as to why we work on the physical body of our children from the neck down but not their faces. One day I saw a video of an SLP delivering Beckman Motor Oral Therapy on a child. I started copying what I saw on the video and noticed a huge improvement in Shira’s range of motion, secretion management, enunciation of words, facial expression and more in just a few days. I knew right away there was something to this. As I researched further another parent told me about rubbing her grandchild’s face with a mini massager she had purchased atwww.superduperinc.com

I purchased one immediately and incorporated the massager into Shira’s routine. After following the routine I saw on video for about 3 months I called my very absent SLP and asked if she could get me more info regarding Beckman Motor Oral Therapy. She advised me that MOT would not be suitable for Shira and the disease she has. I informed the SLP I had been administering the therapy for 3 months and saw a huge improvement.

I quickly told our local institution I did not want to work with my current SLP any more as she was very ineffective. The head SLP met with me at which point I told him I had learned my technique on line and he agreed to come over and see what I was doing. Needless to say he was impressed that this type of info was on line and that I was delivering it so effectively. He could also see the positive effect it was having on Shira.

z-vibe

My new SLP advised on my technique and added a few more procedures to go along with what I knew as well as teaching me the actual Beckman Motor Oral Therapy protocol. I also employed the Z – Vibe (buy extra batteries at time of purchase) and a nuk brush into our routine. All of the devices needed to deliver a stimulating oral therapy for our kids can be purchased at www.superduperinc.com

Another important observation I made years ago was we must amplify Shira’s voice so she can hear herself thereby use her voice and develop her voice like regular children through voice play. Many SMA children don’t do this because they can’t hear themselves.

Mic

So in short amplification of the voice along with stimulating the facial structures daily has truly had a huge positive impact on Shira’s quality of life. This is just another area the medical system has not even considered looking into and in my own opinion a dangerous oversight! I say get your SLP on board or deliver it yourself!