New Speech Device being tested in Europe

There's a new speech device being tested in Europe with children who have Down syndrome. It looks very cool and promising. It would make sense that this would work, because children with DS respond very well to PROMPT therapy. 

Speech Device Helps Children with Down Syndrome

A REVOLUTIONARY speech therapy technology aimed at helping children with Down’s syndrome is being rolled out to the Capital’s classrooms.

Experts at Queen Margaret University revealed teachers and learning assistants at schools across Edinburgh and the Lothians were using hi-tech techniques based on electropalatography (EPG) – where children learn to pronounce sounds with the help of visual patterns generated by a mouth palate containing dozens of electrodes.

QMU researchers have been developing EPG for 20 years but revealed they were now taking it into classrooms, with 20 pupils who have Down’s benefitting through 15-minute bursts of therapy.

They said the new approach marked a radical departure from conventional aural feedback methods, where subjects are asked to listen to sounds and repeat them, which are often less effective as children with Down’s usually respond better to visual stimuli.

Joyce Fegan, a teaching assistant at Prospect Bank Primary School, who is using EPG with 11-year-old Grace Hampson, said: “It has made a huge difference. We’ve noticed her speech has slowed down and it’s been a lot easier for
her when pronouncing sounds and words.”

Researchers explained that EPG uses a palate made for each child which contains 62 electrodes monitoring exactly where the tongue makes contact with the mouth during speech.

The signals are then fed into a device that converts them into a simple pattern on a 
computer screen showing tongue-to-mouth contact.

The therapist – also hooked up to the device through a palate – is then able to show the correct pattern to the child for each sound, enabling them to learn the pronunciation.

“It’s been very positive,” said Ms Fegan, who has been using EPG with Grace every day over the past three months.

“Grace knows exactly how to produce sounds because she’s seeing them on a screen and she really enjoys using the palate.

Ms Fegan revealed that another P7 pupil, Niamh Savage, was also benefitting from the trial, with nine-year-old Rimni Rudden Davey also set to get on board.

Results from classroom trials will be analysed by experts at QMU, who said EPG should “significantly improve” speech production among primary school pupils with Down’s.

Dr Sara Wood, QMU speech and language therapist, said: “By targeting younger children, we are hoping to correct speech problems before they become entrenched. We hope this work will help pave the way to a much brighter future for people with Down’s.”

‘The whole experience has given her more confidence’

• GRACE Hampson, 11, a primary seven pupil at Prospect Bank, has been taking part in EPG sessions for three months as part of the QMU trial.

School staff and family members said they have already noticed an improvement in her speech.

Mum Rosemary, 49, said: “I think EPG has made her think about the sounds she’s producing much more.

“The screen makes it easier to imagine the sounds and picture them, and I think the whole experience has just given her more confidence.”




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Afraid of Change?

Anyone who is involved in Down syndrome and targeted nutritional intervention will likely know that it's a very "hot topic" on many online message boards. Just asking the question, "What does everyone think about TNI or Nutrivene?" will open up a huge can of worms.

I found this out the hard way when we first discovered Nutrivene. Little did I know that it would be such a debated topic when I asked everyone's opinions on this matter. Although, it is much calmer than it was a few years ago on many online message forums, it's still a very passionate topic. And if you're on the "wrong" (I use that term loosely) message board it can bring quite a heated discussion.

For years I have been puzzled as to why this is such a huge debate. I understand people discussing this, weighing out the pros and cons, sharing experiences, etc. But, there are certain statements that are made frequently, which have always left me in confusion. These statements are made when the topic regarding the use of any supplement or TNI comes up on most (not all!) online message boards and email forums.

The statements are always along the lines of:

-I accept my child for who they are and I don't want to do anything to change that

-I don't want to change my child

-I don't want to take away the 'Down Syndrome' from my child 

These statements puzzle me.

From the beginning of us looking into the use of TNI for O, it was never because we wanted to change him or remove the Down Syndrome.  He had some serious health concerns and we needed something to help him be a strong, healthy boy.

When people say these things, I wonder why they would say something like this, unless they just do not fully understand what the use of TNI is for. And, it's obvious, from statements like these, that they don't understand. Because, if they did understand, they wouldn't say those things.

It almost seems as if they are afraid that using something like TNI, that it will change their child for who they are. It makes me wonder about the use of other early interventions.

If someone is so concerned about changing their child, why do people do Early Intervention - Physical Therapy, Occupational Therapy, Speech Therapy, Feeding Therapy, etc? It's the same thing that TNI does. It could be called Nutritional Therapy. Because, that's what it is. It's helping their body and it's nutritional needs. Just as Physical therapy is helping their body in it's physical needs. Or, Occupational Theapy is helping their body in it's fine motor needs. Or, Speech Therapy is helping their body in it's speech production needs. Or, Feeding Therapy is helping their body in it's eating needs.

We fully accept O for who he is with his extra chromosome. We are not trying to remove the 'Down Syndrome' or the extra chromosome from him.

What we are doing, is helping O's body deal with the biochemical changes that the extra chromosome causes. This is not speculation. It's a fact that there are 250+ additional genes in the body of a person with Down syndrome. Some of these genes and proteins are overexpressed in DS and they cause all sorts of harm to the biochemical, medical and nutritional needs of a someone with DS.

I don't want O to develop early Alzheimer's. I don't want O to develop dementia in his 20's. I don't want O to get leukemia. I don't want O to have thyroid problems. I don't want O to have nutritional deficiencies. And the list goes on.

This change is what we are going for. Change that will help O be a strong, healthy, cognitively aware person with Down syndrome. And by God's grace, he has shown us TNI that has the potential to do just that. God has used that to help him and I trust He will continue to use it to help O.

That is the change we're looking for. But, it doesn't remove the fact that O was born with Down syndrome and that, we are not trying to change. If there was a way to fully remove the harmful effects of the extra chromosome, I would do it. But, at this point, that is not a reality. What is a reality, is to use TNI and various other nutritional supplements to help counteract some of the effects of the 21st chromosome.




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If Supplements Don't Increase IQ...

There was a question posed last week by a mother of a toddler with DS on one of the email groups I am on. The topic of low IQ's came up and she asked why would someone (including herself) spend all this money & time on supplements and early intervention if it doesn't raise the IQ levels.

The question intrigued me, because I have never thought of it. And I thought I would bring the topic up on the blog here.

We give all the supplements to O & do so much with him as far as therapy goes, not to necessarily achieve a high IQ. But, to give him the best possible chance at being healthy & thriving. 

That is proven in the lives of those who have children with DS and also in research studies.

Early intervention helps children with Down syndrome achieve key milestones in an earlier time frame. It helps stimulate their brain, helps strengthen their muscles & improves their tone.

Targeted Nutritional Intervention helps support proper brain function & overall health. It helps reduce certain metabolic levels which are in excess due to the third 21st chromosome. It helps increase levels of certain nutrients which are diminished because of the extra chromosome. It helps their immune system. It helps their tone. And I could go on and on with what all it can help!

With all that, never once has an IQ number come to my mind. The reason why we do what we do with O in regards to TNI & early intervention has nothing to do with increasing his IQ numbers. Honestly, I could care less what his IQ numbers are. I know that he is healthy, thriving and smart. That’s what matters. Not what any test might show.

Academic tests at his speech therapist have tested him a good 6 months to 1 year above his age. And that’s all by God’s kindness & mercy. Even if he were to test BEHIND (which he does in some areas), it wouldn’t be a big deal. He’s a blessing no matter what his IQ is.

The goal with giving supplements is what it does in the long run. It may help decrease O's chance of getting Alzheimer's or any of the other diseases that can come about because of the extra chromosome. As I said in this post, we have to look at it as a marathon, not a sprint.

Not in the long run of achieving the highest IQ on some academic test. No one needs a high IQ level from some test to say whether they are smart, or whether they are capable of understanding & doing well.

My little brother does understand. He is a smart little boy. He is thriving. He has excelled in his motor skills. And he's never had an IQ test done.

Treadmill Training for Early Walking

Dr. Dale Ulrich has studied & been using treadmill training for infants with Down syndrome to help them learn to walk. He's found that it helps in many areas if the child learns to walk sooner (cognitive help being one of them).

We have his info & articles in our book, but I thought I'd share this .pdf with you. Dr. Ulrich & his team at the University of Michigan have built a small treadmill for this, but it costs $1000. So, to make it more affordable for parents, you can use any treadmill, so long as you can reduce the speed to 1/2 mile per hour.

He explains the above as well as a lot more on how to use it here.

31 for 21: Therapy At Home

Thanks to all the advances in research with Down syndrome and the mindset change from the early 1900's, children with Down syndrome have so much potential and so many opportunities nowadays.

At times I think we can take it for granted all the opportunities children with DS are given when it comes to physical therapy, occupational therapy, speech therapy, oral motor therapy, feeding therapy, nutritional therapy and so much more. A decade ago, families who had children with DS didn't have all this information and knowledge.

So, the norm now when a family has a child with Down syndrome is to get the child enrolled in some kind of therapy program, be it a neurodevelopmental program, an early intervention program or just private physical therapy, occupational therapy, speech therapy, etc. This is all so wonderful, because most people who have a child with DS need this kind of help. It can be a daunting task to try to figure out how you can best help your child reach milestones.

And so every family learns the abbreviations PT, ST, OT.....and sometimes OMT or OPT ;). And the other abbreviations ND or NACD.

Every family will do the therapy work differently, since there are so many options, like I mentioned above.

For our family, that meant buying books on PT, ST, OT & OMT. Osiyyah never saw a professional physical therapist, or occupational therapist and I don't regret that one bit ;). He never even saw a professional speech therapist until he was 4 years old! And even now, we only see his ST once a month just to get certain ideas from her that I can't learn myself (specifically the PROMPT commands).

With Physical Therapy we bought Patricia Winders book, Gross Motor Skills in Children with Down Syndrome. 

My mom and I both read the book and followed it pretty closely. We'd read it and re-read it to see what therapy items we'd need or what we should be doing with Osiyyah at a certain age or stage. We built balance bars & bought therapy balls (to help build ab support). We sat him on edges of things and held his trunk to strengthen his core & help him learn to sit. We bought the Bumbo seat & the Boppy pillow, both to help with sitting (and both were SO helpful!). We bought a Jumperoo & a walker to help his leg strength. I feel like I'm forgetting some things, so if I remember them, I'll add them.

And Osiyyah did wonderful. He never needed a "professional PT." He learned to sit at 9 months old. He pulled to stand at 13 months old. He crawled for several months before walking and he walked at 17 months old. I will say his crawl was never the "four-point crawl", but he did it his own way and it didn't hinder anything. He can crawl on all four points now :). It would've certainly inhibited him had we forced him to learn to crawl on all four points.

For Occupational Therapy we bought Maryanne Bruni's book, Fine Motor Skills for Children with Down Syndrome.

We did the same with this book and bought Osiyyah all kinds of "toys" for therapy. Puzzles. Knob Puzzles. Stacking rings. Blocks. And so much more! He did wonderful on all of it! And he never saw a "professional OT" either ;).

For speech, I think I've said quite a few times what we use. In case you haven't seen it, this post & this post are two good summary posts.

We haven't really done an ND program, but I think they can be very beneficial.

Now, all this to say, that if the parent or family is well educated, therapy can all be done at home and the child won't suffer or lack anything. There's nothing I regret as far as us not seeing any "professional" therapists. Osiyyah has thrived with us (as in his family) being his therapists. We have such a large family and he gets so much stimulation, therapy and interaction with all of us.

We talked to someone at a regional center shortly after Osiyyah was born and they told us that it sounds like he'll be fine with our family, if we need any help, just give them a call. And we haven't really needed much help. At times, the research and what we read can be overwhelming and it can make one feel unsure as to where to start, but the more research that is done and understanding that comes, it all falls into place. I'm so thankful God has given us the opportunity to be Osiyyah's therapists. It has helped him tremendously.

I know we may not be the norm, but I wanted to do this post to show that therapy can successfully be done at home without much of any help from professionals. I know not every family has a kid (myself!) 16 years older than their kiddo with DS to do all the therapy with, but our family happens to have that ;).