Showing posts with label speech therapy. Show all posts
Showing posts with label speech therapy. Show all posts

Monday, March 3, 2014

Treating Apraxia in Children with Down Syndrome

Please welcome guest blogger, Christine H., mom to beautiful, resilient, Olivia who has T21, as she openly and honestly shares her hits and misses in her quest to successfully help her child speak despite the additional diagnosis of apraxia. 

Sweet Olivia!
Our journey with apraxia really began when Olivia was about 18 months old. We saw a Speech Language Pathologist (SLP) for a consultation and she said that Olivia was showing signs of apraxia.
 
Why? She was not babbling and could not imitate mouth movements at all. Olivia could imitate other gross motor movements, like body gestures, but not oral movements, such as puckering, blowing, etc. 

I truly think I have tried EVERY therapy out there is, which I will describe below.... (All items she recommends can be found at the DS Day to Day amazon store.)

What IS apraxia?

According to the National Institute on Deafness and Other Communication Disorders, apraxia is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. 

The severity of apraxia of speech can range from mild to severe. People with apraxia of speech may have a number of different speech characteristics or symptoms. One of the most notable symptoms is difficulty putting sounds and syllables together in the correct order to form words. Longer or more complex words are usually harder to say than shorter or simpler words. A person with apraxia of speech also tend to make inconsistent mistakes when speaking. For example, he may say a difficult word correctly but then have trouble repeating it, or he may be able to say a particular sound one day and have trouble with the same sound the next day. Someone with apraxia of speech often appear to be groping for the right sound or word, and may try saying a word several times before he says it correctly. Another common characteristic of apraxia of speech is the incorrect use of “prosody” — that is, the varying rhythms, stresses and inflections of speech that are used to help express meaning.

Here is what I didn't know: According to Libby Kumin, speech expert in Down syndrome, about 30-40% of kids with Down syndrome also have apraxia. It is MUCH more than a speech delay. It is a speech DISORDER. If your child has apraxia, you can NOT compare their speech with typical kids with DS. And sadly, our kids with apraxia develop speech MUCH slower than other kids with DS, with the first words arriving at about age five. 

 It doesn't mean they won't ever talk (although some kids don't, but it is rare!), but just to expect it to be slow going. Apraxia is also VERY frustrating. One day she will say a word PERFECTLY and you think they have it down, the next day it is GONE! And the parent is thinking where did it go? It is part motor planning and part memory! For example, Olivia can say "bye" and "kuh", but she can not say "bike". 

So now that you know what it is (and you're thinking the future is bleak!), I am here to tell you its not. 

There is a LOT you can do. I am a research queen, so let me save you some time....

First thing IF you suspect your child has apraxia, get a diagnosis by an SLP who knows what apraxia looks like. Believe it or not, a LOT of them don't! The treatment plan is different for our kids. If you suspect it, what should you be looking for, other than the signs above, of course? For starters, if your child is not babbling (mama, papa, dada, etc.) by the age of two and cannot imitate your pucker or blowing, then you should suspect it and get a diagnosis. Do NOT believe it when/if an SLP says that your child is just delayed because of the Down syndrome diagnosis!

Next, you must get this book: Speaking of Apraxia: A Parents' Guide to Childhood Apraxia of Speech by Leslie Lindsay.
And also this book: Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professionals (Topics in Down Syndrome)by Libby Kumin. On pages 125 - 126, Kumin lists the characteristics of apraxia in our kids.





You must have these CD's: Talk It Rock It, in your car.  They are music specifically designed to encourage your kids to talk.  It is basically speech therapy in the car!!! 


I HIGHLY recommend Talk It Rock It's Imitation Station CD and "Animals Movin and Groovin". Make copies of them so you can play them at home too.


If your child is age three or older, I highly recommend hippotherapy (a form of speech and other therapy in which a therapist uses the movements of a horse to provide carefully graded motor and sensory input). There is something about being on a horse that strengthens the core that is really beneficial for our kids. More details are Lindsay's Apraxia book. 


For blog reading, I recommend the following:

Pursuit of Research's Therapeutic use of fish oil for apraxia

Our Perfectly Imperfect Life Blog

Learning sign language, while controversial in our community, has been a HUGE blessing. We started teaching it to Olivia when she was nine months old. She did her first sign at 18 months...it took awhile! BUT I am so glad I did! Without it we would have had huge behavior problems because she couldn't communicate and we don't have that. In addition, it is a wonderful way to help our children learn imitation. It was a nice bridge into the speech program that we chose to use with Olivia.

Learning how to read has also helped Olivia to talk. I recommend starting with your child's favorite things written on flash cards. Working with the Downs Ed See and Learn (match, select and name program) has also helped. Olivia is now starting to read ALOUD basic sentences. I won't go into details on a reading program here as there are others who have done an excellent job with that. (You can see Teach Your Child to Read.)

I give Olivia a LOT of supplements too (except where indicated, see Andi's blog and the DS Day to Day amazon Store).

 Fish oils as recommended by Pursuit of Research
Green Tea Extract
Gingko Bilboba 
Blueberry Extract 
Choline
Acetyl-L-Carnitine

As for therapy, you must have an SLP that is an expert in apraxia. A lot of people do PROMPT therapy. We tried it for about two or three months and did not have any success with it. Unless you have wonderful insurance (which we don't), it's an out of pocket expense, and at $150 an hour, that can quickly add up. I also found that it is not IMMEDIATELY able to duplicate. I know some people have had good success with it and I am happy for them, but it needs to be done frequently, which is costly, and it can take awhile...as in months. Honestly, I am not THAT patient! 

We had the most success with Speech EZ. Lynn Carahaly is an expert in apraxia and has been a keynote speaker at many conferences. We spent a week in Arizona with her. Within TWO DAYS, Olivia was starting to babble. Lynn uses prompts that are VERY similar to sign language. So if your child knows the alphabet in sign language, which Olivia did, he will pick up how to make sounds very quickly. (Signing Times ABC's)

 At the end of the week, Olivia was saying about five words. Are you kidding me? When we went there, the only word Olivia had was, "Hi!" 
Five words in a week!! I will take it!!! I was ecstatic, to say the least. 

Lynn teaches you how to do a program at home, so that is what we have been doing. I'm not as consistent as I would like, but we try to get the program in at least three or four times a week. It takes about 10 - 15 minutes.

We have also done Talk Tools and Beckman Oral Motor therapy. Neither one of those methods produced actual speech for Olivia (probably because apraxia doesn't happen because of weakness or paralysis of the speech muscles [the muscles of the face, tongue and lips].)  I do think these therapies helped to strengthen her lip muscles, but we actually never worked on speech sounds during these therapies (shocking, I know!). The only time Olivia worked on actual speech sounds was during the therapy sessions in Arizona. I still, however, do Talk Tools to strengthen her lip muscles and to get that tongue back into her mouth! 


We also work with some great apps on the iPad. We love all of these apps. Olivia probably likes Speech Box the best, but she likes all the other ones too.

Articulation Station
Tiga Talk
Speech Box
Speech-ez apps

As for Olivia's story, we had a preliminary diagnosis of apraxia at 18 months due to no babbling and a fairly quiet child who was unable to imitate lip movements. As the years progressed, Olivia moved from mild apraxia to severe apraxia simply because she did not progress with speech at all. It wasn't until we learned the speech-ez program that Olivia had changes at the age of four! 

 She is now almost five and is reading simple, "I see a ____" sentence books. She can say about twenty to thirty words with many more approximations. AND, here is the kicker: This girl is a leukemia patient. She has been on chemotherapy all of last year. We have both worked hard. I hope my story will help someone else whose child has apraxia.

 Thank you for sharing, Christine! I know your hard work and experience will save parents a lot of time (and money!).

Update 3/24/2015
Wow.  I can't believe it's been a YEAR since I wrote this blog post on our journey with apraxia.  In a years time, Olivia has continued to become more vocal, particularly when reading, but even more vocal as a whole.  She has been off of chemo since June, 2014, so this is also playing a role as she just feels BETTER.  Olivia even had a five hour double knee surgery at the end of November 2014 that she had to recover from and still the speech gains are huge.  In July, 2014, I started back with Beckman oral motor therapy because the tongue was REALLY coming out. I added Talk Tools in January of this year because I felt the combo of the two might be just right for Olivia to strengthen her mouth muscles. 

In the middle of October, I saw a speech program advertised on Facebook called Gemiini.  It is digital video modeling. I knew about the research on that and had seen improvements with Olivia when I used it. I have a VERY open mindset when it comes to trying new things.  I figured I'll give it a try and if it works GREAT! If not, no harm, no foul. Just out a few bucks. To give Olivia a voice is worth it. So I jumped in. I was VERY impressed with what I saw.  First they have over 12,000 videos!! Holy jeepers that is a LOT.  Second, all of the videos feature mostly kids with a few adults.  Olivia LOVES watching kids! Third, they have videos of the child's mouth (only!) saying the word. I KNEW this was going to be a hit.  Fourth, I can create video sessions from the 12,000 video choices to create a session that EXACTLY suits Olivia! I don't know of any other program that I can do that with.  Okay, game on! The program is a little complex because there are so many videos, but I quickly figured it out. I created videos to target exactly where Olivia is weak in. Here are some examples of ones I created:

  • D sounds and words.  ("Duh" sound, dance, doll, dog, - close-up of the child saying the word and the sound)
  • T, S, and R words.  (Tuh, SSSS and RRR sounds and simple words for each letter.) When I focus on the letter sounds, I am also combining Speech-Ez with it.  This double whammy seems to really be helping. 
  • Really long video session for long car rides with 82 different video clips - Olivia, duck, duck, goose (her favorite), names of her cousins and friends, W sound and want (really trying to get her to say this word correctly), D and M words and sounds and some other pre-school games.  I also mixed in some humor to keep her from getting bored.  When I hear her saying new words that are in the video in the car, my heart just melts. 
  • Social skills (saying please, thank you, making choices and more)
  • Conversation - I want (ball, bear, cup, food), I love you, Are you sick, Do you need help?, I don't know. 
I think Gemiini fits in perfectly with a neurodevelopmental program.  When we were on NACD, they had me make videos and some of them are EXACTLY what is in Gemiini.  

The key with apraxia is repetition. They say that apraxia requires about three one-hour speech sessions a week.  I can't afford that at $150 an hour. That's insane and we don't have good insurance.  The school district MIGHT provide one hour a week. Maybe. It's still not enough.  Gemiini fills the gap! It's not a replacement for her SLP or all the other things I am doing, it's in addition to.  

They have an iPad app, which doesn't require WiFi, so we download the sessions and can watch it in the car.  We watch it at breakfast and lunch and probably one other time during the day, plus if we are out for over 10 minutes in the car. Olivia will often take the iPad and go right to the Gemiini app to watch it and practice saying words!!

I would say Olivia can now say approximately 200 words; again mostly through reading. Her spontaneous language is now around 30 or so words. Her horse therapist commented to me today on how her articulation is REALLY improving (she said "yellow" perfectly clear when asked what color the beanbag was) and asked me what I have been doing.  "Gemiini," was my reply.  

It's been a REALLY LONG time, since I have been excited about something, but I am super excited about this.  I strongly believe this is going to be a deal changer for our kids! The math piece alone is unbelievable.  They really made it visual. There are pieces on how to take a shower, how to interact with other kids, how to play with other kids, so so much there!  Bottom line, YOU (or your SLP) can create what your child needs.  I am constantly tweaking the videos to appeal to Olivia so that she keeps enjoying watching them. 

The day before my birthday in March, Olivia spontaneously said, "I love mommy" -- TWICE.  I think I died.  It was at that point that I knew I found something amazing for my child...for any child with a speech delay, really. I highly recommend you check it out. The pricing information is listed on their website.  If you need financial help, don't hesitate to apply for it!

And there's a Facebook group called Gemiini Secret Discussion Group you can join to ask questions and get support for the program.


Sources

 Wikipedia: Hippotherapy

The National Institute on Deafness and Other Communication Disorders: Apraxia

Related Posts

Getting Your Child to Communicate

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Wednesday, March 30, 2011

Getting Your Child to Communicate

Beyond the once a week speech therapist, (which I can't imagine would be enough to do much good!) there is a lot more you can do early on and along the way to help your child to communicate better. Many factors work together in order to achieve excellent speech and communication skills.
 
Since so many different parts of the brain and body have to cooperate in order to be able to talk, I use Jett's speech as a gauge to let me know how his brain is working. If his verbal ability continues in a straight or rising line, all is well, if it slows, stops or regresses, I know I'm missing something and need to address it.
 
How's Jett's communication?
Fortunately, we learned about steps to support Jett's speech when he was very young. (You can read more about his speech milestones here.) According to his IEP evaluation when he was a month shy of 3 years old, his articulation was excellent -- above average on a typical scale. At 3 years and 2 months, he says: "I see bags... I see bags from the grocery store!" (Which means he's coming over to empty them out for us so we'd better take out all the breakables!) "The bird is flying!" (He saw a hawk.) And the air was cooling down as night came on and he said, "It's cold... It's snowing! The snow is falling! In my mouth!" (We're in Florida, but he's read about snow in his books.) He also told me that the slide is too hot and dangerous. (He's been hanging out with my mother.) Last week, I was commenting on how often Jett's little brother was kicking me in my stomach and he put his hand on my stomach and said, "Ouch! He stung me!"

When Jett got an evaluation before he started 4K, he didn't qualify for speech therapy (he also didn't qualify for an intellectual disability!). He says stuff like, "I'm an astronaut, flying through outer space!" (He went down the tunnel slide on the playground.)
At 6 years old, he expresses himself well by letting us know what he's thinking, what he needs and answering questions. We are working on the back and forth communication that involves interest in others and empathy, which kids w/Asperger's (like Jett) often have trouble with. At this point, he makes conversation by As far as pronunciation, Jett does say "silly" instead of "chili" so I need to figure out how to work on that.

In this post, you'll find an organized variety of informative links to help you tackle your child's full range of communication issues:


Steps for Better Speech


Rule Out Physical Issues

Tongue Tie
First, look for any structural issues that may secretly be causing speech delays. Is your child tongue tied? TT would cause difficulty saying sounds such as "t", "d" and "n." Did you know that there are four types of tongue ties? I know a child with DS who was tongue tied but it was not discovered until she was 6 years old because it was further back in her mouth! 

 Clef Palate
Does your child have an undiagnosed clef palate? Have your child's ENT (Ear Nose and Throat) Doctor check for you. Here are several types:
  • Incomplete cleft palate- A cleft in the back of the mouth in the soft palate.
  • Complete cleft palate- A cleft affecting the hard and soft parts of the palate. The mouth and nose cavities are exposed to each other.
  • Submucous cleft palate- A cleft involving the hard and/or soft palate, covered by the mucous membrane lining the roof of the mouth.
I know a child who had a submucous cleft palate that wasn't discovered until he was three. It caused him to route air through his nose instead of mouth. So he was physically having a hard time talking. His wasn't found until they did a CT scan. Symptoms include: inability or difficulty blowing air out of the mouth; drink or food coming out of the nose and/or vomiting out of the nose; hard time saying any sounds/words that require breath blown out of the mouth like "f". And if there is a cleft, taking out adenoids and tonsils can be contraindicated because it makes the problem worse.

 Basic Body Functioning
Next, your child's senses need to be addressed. Is she hearing, breathing and seeing okay? Children can speak better when they can hear clearly, breath through their nose and be able to take nice, deep breaths. Being able to see a person's mouth and mimic them as well as clearly see text to increase vocabulary will help support attempts at speech.
Eat to Speak

Avoiding unhealthy foods and those that often cause allergies (such as dairy -- known to promote congestion) will help to keep nasal and ear passages clear so that your child can hear and breath better.

Toxin Free Babies

Down Syndrome OPTIONs Diet and Nutrition Section

Healthy Meal Planning Blogs

Address Sensory Issues

If you child is sensitive to sound, the likely culprit is candida or yeast overgrowth. An antifungal relieved Jett of his sound sensitivity. 

Neurodevelopmental exercises will help with sensory issues such as being overstimulated or understimulated by sound, touch or visual input.

What is Neurodevelopment?  
Get Your Own Neurodevelopmentalist

Oral Sensory Issues

Oral Motor Therapy also helps with sensory issues related to the mouth as well as trains the muscles and prepares the child with pre-speech exercises.
How to get your local Speech Therapists trained in Oral Motor Skills from Hannah's Shenanigans blog.

 
Verbal Input 

When Jett was an infant, I talked incessantly to him to make sure he had plenty of input. I just gave him a blow by blow account of whatever it was that I was doing. "Okay, Jett, now I'm trying to find a diaper for you so we can keep you nice and dry... Oh, here's a good one! It's blue with white snaps..." Studies show that babies who were talked to a lot spoke earlier than those who had quiet parents.

What's the best way to interact with your child to promote speech? 

Read this article by Miriam Kauk at the Einstein syndrome website, which shows the Communicating Partners method by Dr. James D. MacDonald. The support DVD is listed in the DVD heading below.

Here are some great video clips from James D. MacDonald of Communicating Partners with tips to help your baby express him or herself:

Free video clips to get you started right away.

http://jamesdmacdonald.org/Articles/youtube.html


Reading to Speak

Reading to your child in order for him or her to hear a variety of words in a variety of ways along with pictures will aid your child in learning new words to communicate with.

Books to Read to Your Baby

Books for Your Toddler (coming soon)

Make simple Conversation Books with inexpensive little photo albums to promote dialogue and more.

Should you teach Sign Language?
I did not use sign language with Jett, but I believe teaching a couple of signs would have eased frustration and promoted communication. (Such as milk, hungry, thirsty, potty, sleepy and hurt.) I, personally, would avoid straight communication through sign since we really want our kids to SPEAK.

Read Pursue Speech, not Sign on the Einstein syndrome website for another perspective.

If you do choose to teach sign language, here's a nice post to help you teach your child to sign by Gretchen Mather of Julian's Journey blog.

Proper Feeding to Promote Speech

Feeding your baby correctly will help with tongue thrust as well as to prevent ear infections.

How to Spoon Feed

Proper Breastfeeding for Down Syndrome

Electronic Support
There's also a variety of electronic support that you can use (to increase vocabulary & expose your child to different voices and sounds). However, actual face-to-face, one-on-one talking with (not to) your child is by far the best way to good speech.

Gemiini.org uses video modeling (videos of people carefully pronouncing words and doing activities) to unlock speech and language for people with special needs. Many children have seen results from this program. (Jett didn't like it, but he's not as interested in people's faces like most children. He did like the videos using foreign language, but there weren't many of those videos at the time we tried it.) There is a very active group on Facebook called MK's Gemiini & Beyond that you can join to learn more. It is run by parents, not Gemiini, so you can get unbiased info. I would absolutely ask to see how to qualify for a discount rate if paying $90 a month is not easy for you. You can see if you qualify to get it as low as $10 a month. They have a free trial, but they do take your credit card information and will start billing you after the 7 day trial, so mark your calendar and fill out any paperwork for a discount ASAP if your child seems to respond well.


My Reviews of Educational Media

Readeez: Songs Supporting Reading Free Download


What supplements best support speech?
Longvida Curcumin

Jett said his first word four days after starting LC when he was 8 months old. It was "water". He's not the only one who's seen huge leaps in verbal ability on it!

Neuroprotek

Jett started this at 19 months old and I have seen great improvements in his speech including more syllables and parroting early on and has progressed now to two-word sentences (and larger) at 27 months old. This post also explores the benefits of Piracetam. I had given them at the same time, but realized later that NP was the one that really helped Jett's speech.

L-carnosine

I had been giving Jett 100 mg everyday, but when I increased it to 400 mg at 27 months old, I saw a big increase in expressive language. See my post Why L-carnosine for the T21 Population?

Protandim

I know of three moms who have given their child Protandim which is a mixture of green tea extract, bacopa, curcumin, ginkgo, milk thistle and ashwagandha. Two moms saw huge increases in speech and one had a negative reaction, which stopped when she stopped giving it.

Helpful Books can be found at the DS Day to Day amazon Store.
Play To Talk: A Practical Guide to Help Your Late-Talking Child Join the Conversation by James MacDonald Ph.D. and Pam Stoika Ph.D

Early Communication Skills for Children with Down syndrome by Libby Kumin

Helpful DVDs

Parent Kit: Using Oral Placement Therapy With Your Child - TalkTools®
This is a great parent DVD for quality, at-home speech therapy. You can purchase the entire parent kit which includes all the tools necessary including a 3 hour DVD where Sara demonstrates how to use each of the tools at home. This is a link to just the dvd http://www.talktools.net/s.nl/

Talk tools works on building oral motor skills (muscles in the mouth) to build a foundation for speech production.

Communicating Partners DVDs: ECO I and ECO II and Shortcuts are great companions to or replacement for (if you must) the Play To Talk books because they show you exactly what to do and how to do it. I'm a big fan of James D. MacDonald's techniques!

For Apraxia 

See this post: Treating Apraxia in Children with Down Syndrome

What have I seen help preverbal children talk when nothing else has? 

The QRI Home Laser Program. QRI is short for Quantum Reflex Integration. This program involves using a safe, hand-help cold laser (beams of light and LEDs) along with an easy to follow step-by-step instruction booklet and online course to teach you to effectively integrate your child's reflexes. Unintegrated reflexes effect many different aspects of your child's development including speech, movement, cognition, mood and behavior. They even have a Talk Protocol. I spend from 30 minutes to an hour a day on each of my children while they nap and have seen great results.

 Join the QRI Cold Laser Facebook group and read their FAQ to learn more. You'll find posts from parents and practitioners who use it on children who have Down syndrome (and other issues). 


Regression or No Progress?

If you have tried all of this and your child still doesn't speak or you've seen regression in speech, I'd strongly suspect an infection that may have traveled to the brain... Some people call it PANDAS or PANS, which is a misnomer. Unfortunately, it's more common than we realize. (I see it quite often in those who have DS.) This is the best book I've found on the root cause and what you can do about it: America Is Infected.


Related Posts
Treating Apraxia in Children with Down Syndrome

Protecting Your Child's Hearing

Improve Your Child's Vision

Keeping Nasal Passages Clear & Mouths Closed

Books to Read to Your Baby

BrillKids is offering discounts for Special Needs

Early Steps for Better Speech

How to Spoon Feed

Readeez: Songs Supporting Reading Free Download

Readeez Sale

My TV/Video Strategy

Parent's Resources for Guidance on Down Syndrome

Get Your Own Neurodevelopmentalist

15 Things A New Parent Should Know

Some TV is Good for Our Kids

Longvida Curcumin

Piracetam

Why L-carnosine for the T21 Population?

Neuroprotek
 
 
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