Tagged "special needs child"


Ask a Therapist: Down syndrome Feeding Question

Posted by Deborah Grauzam on

Hello, my daughter is almost 2 years old and has Down Syndrome. We had the opportunity to meet Lori Overland when my daughter was about 9 months old. I feel so fortunate to have found TalkTools while my daughter was very young, although we still have some struggles. Our OT is familiar with TalkTools and is also a feeding expert. We have an issue with tongue thrust/protrusion. My daughter drinks from a straw but she sticks her tongue out. I think she may still be using the suckling action. (We have never used sippy cups.) She eats a lot of foods and we have always tried to introduce solids on the sides. She does chew and bite on things and we are slowly progressing to more challenging chewing foods. We have your straw program but have only used the first straw due to tongue issues. I believe she has what is called a reverse swallow – she sticks her tongue out to move food back before swallowing.

My daughter sticks her tongue out when playing and puts everything in her mouth. Sometimes I feel like  it's a game to her to stick her tongue out. We also have some chewy tubes and a z-vibe. My daughter will sometimes bite down on the z-vibe but doesn't care for the chewy tubes. She loves to have her teeth brushed now and bites down on the toothbrush all the time. I am sad and discouraged and not sure what to do. I feel like we have worked so hard but she still has this problem. I know it can be corrected, I just don't know what our next step should be. Any guidance you could share would be wonderful. Thank you so much.

Hi, children with the diagnosis of Down Syndrome often have this issue. The first thing you need to do is see an Otolaryngologist (ENT) and have him/her look at the adenoids, tonsils and Eustachian tubes to ensure that there is no airway obstruction causing the tongue to be displaced forward for breathing. Sara Rosenfeld-Johnson explains these issues in this article.

Once there is medical clearance, you will need to do a series of feeding and oral placement activities to provoke three main goals:

1. Jaw Stability

2. Lip Closure

3. Tongue Retraction

While I cannot diagnose or create a program plan without seeing your child, a few general suggestions can be given.

A. I suggest you take Lori's course on the Down Syndrome Population and/or her Sensory-Motor Feeding course. You have a great start with slow feed for solids and the straw, however it seems you need to add a few more pre-feeding tasks to the repertoire. Maintaining tongue lateralization and Lori's tongue hugs would be helpful. Cheek toning and the upper lip stretch will be useful as well.

B. I suggest using the Honey Bear Straw Cup mid line, supporting the jaw and superimposing the correct oral motor skills for swallowing by supporting the jaw, and squirting small amounts of liquid into her mouth in sequences. This breaks the suckling habit. The straw should be no longer than 3/4 of an inch.

C. A combination of Oral Placement activities such as: Bite Blocks, TalkTools Horns and Bite Tubes would be great for her, but this type of plan really needs to be created by an experienced TalkTools Therapist. Please visit the "Find a Therapist" page. We also offer traveling clinics -- perhaps you can catch up with one of us when we are local!

Hope this helps :) Thanks for your interest in TalkTools!

Robyn Merkel-Walsh

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Ask a Therapist: Nutritive Feeding for Charge Syndrome

Posted by Deborah Grauzam on

I have a 4 year old student with CHARGE SYNDROME. He has minimal intake and could be looking at a feeding tube if this declines any more. Mom is totally fighting with him (holding one hand with her mouth, the other with her non-feeding hand and then spoon feeding with the other!). Feedings take at least an hour to get adequate intake. Would love to pick your brain!

Hi Lisa, I would be happy to talk to you about your little one with CHARGE. I often see parents who are frantic to get their child to take adequate nutrition. In therapy, your goals should be to assess this child's sensory motor skills to support feeding and to work on the underlying motor skills to support safe nutritive feeding. I would also recommend consulting with a nutritionist to make sure this child is getting adequate nutrition. Perhaps you can look at a complete nutritional shake (something like Complete), so he does not need to be force fed, while you are working on sensory motor skill development. If this child is unable to get adequate nutrition by mouth, tube feeding may be a the best option. It often allows parents to relax, work on developing the motor skills for oral feeding and to enjoy mealtime with their child.

Hope this helps!

Lori Overland

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