First off what IS apraxia? According to the National Institute on Deafness and Other Communication Disorders is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). 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. People with apraxia of speech also tend to make inconsistent mistakes when speaking. For example, they may say a difficult word correctly but then have trouble repeating it, or they may be able to say a particular sound one day and have trouble with the same sound the next day. People with apraxia of speech often appear to be groping for the right sound or word, and may try saying a word several times before they say 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 Down. And sadly, our kids with apraxia develop speech MUCH slower than other kids with Down with the first words arriving at 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 they 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 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 let a SLP tell you that your child is just delayed in their speech because of Down syndrome!
Next, you MUST get this book. Speaking of Apraxia
And also this book Early Communication Skills for Children with Down syndrome. On page 125 - 126, she lists the characteristics of apraxia with our kids.
You must have these CD's in your car. They are music specifically designed to encourage your kids to talk. It is basically speech therapy in the car!!!
If your child is age three or older, I highly recommend hippotherapy. There is something about being on a horse that strengthens the core that is really beneficial for our kids. More details are in the book above.
For blog reading, I recommend the following:
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 them learn imitation. It was a bridge into the speech program that we used with Olivia.
Learning how to read has also helped Olivia to talk. I recommend starting with their favorite things on a flash card. 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.
I give Olivia a LOT of supplements too (except where indicated see Andi's blog dsdaytoday.blogspot.com).
Fish oils as recommended by Pursuit of Research
Green Tea,
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 duplicatible. I know some people have had good success with it and I am happy for them, but it can take awhile..as in months. Honestly, I am not THAT patient! We had the most success with https://fdhkids.com/ 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. She uses prompts that are VERY similar to sign language. So if your child knows the alphabet in sign language, which Olivia did, they will pick up how to make sounds very quickly. At the end of the week, Olivia was saying about five words. Are you kidding me? We went there and the only word Olivia had was Hi! Five words in a week!! I will take it!!! I was ecstatic to say the least. She 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 produced actual speech for Olivia. I do think they 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 in her mouth!
I have not done the Kaufman program (although I did order set one of the cards) primarily because it is too far for me to get to. I have heard some people have had good success with it. http://www.northernspeech.com/
I have not done the Kaufman program (although I did order set one of the cards) primarily because it is too far for me to get to. I have heard some people have had good success with it. http://www.northernspeech.com/
We also work with some apps on the iPad.
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, a fairly quiet child, and 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.
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