Wednesday, 22 August 2012

Tongue Protrusion in People with Down Syndrome

Tongue protrusion in people with Down Syndrome

Since Felix has been born I've had quite a few people ask me why Felix, and others with Down Syndrome, often have their tongue sticking out. There are several reasons for protrusion of  the tongue in people with Down Syndrome. I'll try and explain these as best as I can.

- Babies with Down Syndrome usually have a much weaker suckling motion than other babies, often making breastfeeding very difficult. The weaker suckling, combined with a higher than average palate, means that babies with Down Syndrome will usually hold their tongue in a forward position in order to effectively feed. 

- People with Down Syndrome generally have smaller mouths and higher palates, making their tongue disproportionately big in relation to their mouth. It used to be thought that their tongues were bigger than usual, but it's actually their mouths and jaw which are smaller. 

- Very often, those with Down Syndrome have narrower airways, sometimes causing respiratory problems. As a result of this, people with Down Syndrome may have trouble breathing through their nose so will breathe through their mouth instead, thus protruding their tongue.

- The most common reason for protrusion of the tongue in people with Down Syndrome is poor muscle tone (hypotonia). Various muscles of the body can be affected by hypotonia, including the bowel (causing constipation), lungs (difficulty breathing) and limbs (affects the ability to stand, sit etc). The tongue, of course, is another muscle and can be difficult to control if the person lacks strength in that muscle. Felix will hold his tongue inside his mouth most of the time, but if he is concentrating hard or is tired it will protrude from his mouth a bit.

I explain it as being like when you or I go to the dentist and have an anaesthetic in our mouth. For a few hours afterwards, our mouth will hang open and our tongue will protrude a bit and feel huge inside of our mouth. It feels like we lack control of it's motion. If we try to talk, we sound a bit funny and may even drool a bit. This is similar to the lack of muscle strength people with Down Syndrome experience. People often say that those with Down Syndrome 'talk funny'. Try speaking out loud next time you've been to the dentist and really think about it. It's not that you don't have the ability to talk, but when you lack the strength in your tongue it affects the sound of your speech.

There are conflicting views amongst parents of children with Down Syndrome about what to do about tongue protrusion. Opinions vary from ignoring it, to pushing their tongue back inside their mouth every time it sticks out. I believe people need to do what they feel is the right thing for them and their child, causing the least distress as possible. Personally, we're not worried about it at the moment. Felix was breastfed for 18 months (which meant he had to build up some strength in his tongue, because it's harder to suck than a bottle). We have also tried to use cups which encourage him to hold his tongue in a more natural position. He does protrude his tongue sometimes, but I think we'll wait until he's older and then maybe remind him to put it back inside his mouth if he's doing it excessively. 

Little bits of news

Firstly, I'd like to say a huge thank you to those who have taken the time to read my blog. Since I began writing my thoughts about life with Felix, at the very end of February, I have had well over 11,000 people visit my blog. I really hope it has been encouraging for those of you walking the same path as I am, or for those of you about to embark on your journey with a child with Down Syndrome. For the people who are reading to become informed about Down Syndrome, I applaud you. You are those who, along with us who have someone in our life with Down Syndrome, are making a difference in the world and creating a more accepting and inclusive future.

Some fantastic text was added to a photo of Felix, by a friend of ours, to create awareness of the 'abilities' of people with 'disabilities'. This photo was then put on Facebook and within a day, has gone viral. I hope the photo touches many people and makes them think about how much people with disabilities have to offer the world. It's great to see Felix's little face pop up on my news feed over and over again! Thanks to Jim for the great job he did :)







18 comments:

  1. Very good information and such a sweetie! Our son is 18 with DS. Shortly after he was born the mom of another young man with DS visited me in the hospital. The best advice she gave me was to gently tap his tongue and he will pull it back. Doing this small reminder from infancy has benefited him greatly. Just like any other muscle you have to use it or you lose it. So just that small reminder helped him so much. But in saying that, every child is different. I am just glad that someone passed this along to us because it worked wonders.
    Our son constantly amazes me every day, what a joy he is to have in our lives.

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    1. Thank you! It's great to hear from parents of older kids and hear about your experiences and advice. Your son sounds like an incredible young man. I look forward to watching Felix grown and learn. He fills every day with so much happiness!

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  2. Felix is so freaking adorable!!! (:

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    1. Only just noticed this comment...sorry for the late reply! Thank you so much...we think he's gorgeous!! Definitely lights up every day! X

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  3. Seeing Felix's picture brought back memories of one of my students with DS. He is a cutie pie. People with DS are very smart, and like his picture says "did you know I've got way more abilities than disabilities" THAT IS SO TRUE! Mom, keep up the good work. They are a joy to be around.

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    1. Thank you! People with DS can never be underestimated, that's for sure!! Felix has amazed us with his desire to learn! He really is an inspirational little guy! Glad you've had the pleasure of working with someone with DS :)

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  4. This is a beautiful blog. I don't have a child with DS, but I read every word. Just love it. Thanks.

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    1. Thank you Jenna. As you can see, it has been a while since I've been on my blog so I didn't see this message until now. I'm hoping to start back up soon. I'm glad you've enjoyed reading. I love sharing about my little guy's life :)

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  5. My son is 5 months and I was wondering if this was a trait.... thx so much for sharing your very cute son with me.

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    1. I'm sorry I'm only just seeing this message now. I have been so busy, my blog has taken a back seat lately. Congratulations on your new little guy...he will bring you so much joy!!

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  6. Felix is beautiful! I don't have a child with DS but recently started watching the new show called Born This Way to learn. & am amazed at how smart & "normal" the awesome people with DS are on the show. They have wonderful parents also.

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    1. I'm so excited that you are going out of your way to be educated about people with Down syndrome. You are right...people with DS are amazing! Thank you for being someone who is working towards making the world a place of acceptance and equality for those with disabilities. As a parent, it warms my heart!

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  7. my little brother who i cared for as he was #7 n i #6 in family and now at 52 with our parents gone i am again caring for 24/7, he outlived and overcame every obstacle the medical folks could offer my folks as best case scenarios - i often look at him and even in his advanced age with complications the look of complete "trust" is what i perceive most folks are attracted to with ds children through to adulthood, if they are part of the family as my mother ensured, the ds becomes transparent and the challenges diminish to nothing more than daily routines. as my brother ages it becomes brutally apparent the aging process targets him more than i, as of four years ago he could write/read common words and do simple math along with sports, soccer, basketball, those days have passed, my only advice to anyone would be take time to enjoy the extra needs of those with special needs - its stops time, slows your pace, you become more loving as an individual as you give what you get, unconditional smiles, hugs, love, handshakes, thank you's and so very much more, its all in the facial expressions, pure love... good lord bless all that come to know and care for them, we are better for knowing them.

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    1. Thank you for sharing! I'm sorry your brother is having some difficulties as he is ageing. How beautiful for him to have someone, like you, who loves him so much and cares so deeply for him. I totally agree with you... our lives are so much more enriched by having people like your brother, and my little Felix in them. Much love x

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  8. Thanks Jenna, your Felix is adorable. I don't have a child with DS, but the people I've met over the years with DS have been some of the sweetest souls I've ever met. You answered my questions beautifully. I'd love to see updates on Felix as he grows if you intend to share that with your blog. God bless your family, Chrissy

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    1. Thank you! Yes, people with Down syndrome seem to have a gentleness about them and an intuition for the way others are feeling, which is quite incredible! I hope to keep updating (hopefully more regularly) about Felix as he grows. Thank you for your message!

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  9. I realize it has been awhile since this blog has been published and commented on and I am not sure if it is one you are still active on, but I wanted to comment anyway, in hopes you may see it. First of all, your child is adorable. What a handsome young man. I can tell he makes you proud.

    I don't have a child with Downs. I never had biological children, but do have a stepdaughter, who is now an adult. I wanted to read your article, anyway. I was interested because I used to work in a large hospital, on a neurology floor, and we used to get a lot of patients with Downs who also had seizures. I always had a special connection with these special people. One of my co-workers there said in all her years working in nursing, she had never seen anyone with the ability to get along with those individuals the way I could. When I finally quit (to go back to college and change careers), she made me promise that if I ever went back into the medical field again, I would work with people with Downs. I could make good things happen with those folks; I could get those who were severely impacted to respond--they would acknowledge my presence with smiles, laughs, eye contact, whereas they would completely ignore everyone else; one who was always severely agitated and had a history of hitting and biting would smile and run and hug me each time she saw me-I got a complete behavior change each time for the positive; and they seemed to just genuinely like me. My friend once asked me how I did it and I told her that it was because of my viewpoint of them, not to be afraid of the disease, and to treat them as any other normal person because these individuals are not dumb and they know when someone truly likes them or not, and they are responding to the fact that know I truly like them. She asked me what my specific viewpoint was and I told her---there is a person inside there, now go find it. :)

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    1. Thank you Marnie for your beautiful message. I have not been as active on my blog as I would like to be over the past couple of years. I went back to work when Felix was in kindergarten, so I don't have the time to write like I used to.
      Thank you for sharing your story. What you have is a gift that not everyone has. Thank you for looking beyond the disability and seeing your patients as the people they are; individuals in their own right, who have the same rights to be loved and included as everyone else.
      My Felix is amazing. He will be 7 in a couple of months and still teaches me so much every single day. He is such a gift!

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