The vast majority of children with Down syndrome are born with something called hypotonia, which means they have low muscle tone. This usually results in reduced muscle strength and a very floppy feeling when holding them. Hypotonia can affect only some or all muscle groups, including the mouth and tongue.
Fortunately, Lanie’s mouth muscles seem to be quite strong at this point with only her tongue showing signs of slightly lower tone. Her speech therapist thinks it could be because I started working with her months ago. I’m very hopeful that she will be able to communicate very well as her language skills increase. Time will tell.
For anybody reading who needs encouragement and/or advice from somebody currently in the throws of it, here are some of the tools I’ve purchased to help Lanie with any oral issues she may have now and stay off any problems she could potentially have in the future.
I first saw this tool a couple months ago on Noah’s Dad’s blog. Noah is a little boy with Down syndrome and his parents have been unbelievably helpful by posting videos and reviews and encouragements from the time Noah was just a baby. Noah is such a sweet kid and was really the first person to teach me that Down syndrome was not scary and that I didn’t need to be afraid. What an impact his young life has made so far.
The Z-Vibe is an oral tool that vibrates and massages the mouth gently. This allows for more sensory input and stimulation. As her therapist puts it, it helps to wake up the mouth and get Lanie ready for spoon feeding. Honestly, I don’t notice a difference feeding her after I use the Z-Vibe as opposed to not using it at all but we still use it faithfully because she likes it and over time I think it will help.
I kind of went overboard on her tip collection but I’m okay with that and as Lanie grows and her needs change I can add more tips. I have hopes that she won’t need them but if she does I’m glad they are available.
I cannot remember where I first saw The Juice Bear but as soon as I learned that sucking through a straw helps increase lip muscle strength and encourages proper tongue placement I bought one on Amazon. Really, any cup with a short straw would do but I like that I can squeeze the liquid up into the straw to remind Lanie that there is something good in there. She isn’t great at it yet, but she was able to suck water through a straw at 5 months old and that is pretty early. We don’t use it every day but I do offer her a small bit of juice in it a few times a week. Her therapist uses one with her too.
Lanie’s therapist gave her these two soft, rubbery tubes to chew on and Lanie really loves biting on them. Her jaw and cheek muscles seem to be very strong and these tubes will help to keep them that way. I don’t know where they get these but you can get similar ones on Amazon. There are also chew tube tips for the Z-Vibe.
So those are the tools we have so far for her oral therapy. She’s only 7 months old and I’m sure her needs will change over time. There are two books I would like to have for her. The Z-Vibe Tips and Techniques book and Early Communication Skills for Children with Down Syndrome.
We have noticed that when we feed her smooth baby food she does much better if I mix in some baby rice cereal, and she’s not fond of small bites. Apparently, the size of the bite and the added weight of the cereal is more stimulating and enjoyable for her.
Her physical therapy is just getting started but I do have a few things I’ve purchased and have been using. I’ll write a separate post on this before the month is out. Maybe tomorrow.