Wednesday, June 29, 2011

Speech and Apraxia

Oh.....speech.....sigh. It's SO hard for Zoya. Currently, Zoya receives outpatient speech therapy at the local hospital once a week for 30 minutes. Before she turned 3, she got speech for an hour every other week at home.  With it being summer, she is only receiving minimal therapy through school.  She can say 10-15 words, although they don't always come out the same way....she has lots more approximations, but overall, her speech skills just aren't really close to her other skills developmentally. About six months ago I started wondering about APRAXIA, which is a motor planning disorder that makes speech pretty difficult. Just recently children with Down Syndrome have been getting diagnosed with apraxia more and more. The old theory was that kids with DS couldn't also have apraxia, but more recent research shows that is not true. Apraxia is also referred to as childhood apraxia of speech, verbal dyspraxia, or oral apraxia.

Here is a definition of apraxia taken from
Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.

Zoya is a tough cookie to figure out. She shows some signs/symptoms of apraxia but other things she shouldn't be able to do with apraxia, she can. All cases of apraxia present a little different so it's not exactly easy to figure out in some kids. Zoya's inconsistency in words/sounds is a big concern as well as losing words after she has learned to say them. For an example of inconsistency...the word "baby." Sometimes it comes out sounding exactly like "baby," other times she will just say "ba" or "baba." Vowels are very difficult for Zoya. She will learn one vowel, like long o, and then learn long e and no longer be able to say long o. She can imitate many isolated consonant sounds, but gets all mixed up when trying to produce more than one syllable. She also cannot mimic movement of her tongue like she should be able to. If I say stick your tongue out, she can do that, but she cannot move it up or down or side to side on command. It's just kinda there wiggling around, trying its hardest LOL.

So no therapists, until today, have been able to answer this question: "Is Zoya's speech developing sequentially like it should be, just delayed?" Kids with DS meet milestones, typically they just meet them later than children without developmental delays. This would be true for speech as well, and I hear the magic number for speech to really start taking off for kids with DS is around 4 years old. So, since Zoya is only 3, most therapists have had the "wait and see" approach....just saying, "she'll get it, let's just wait and see..." meanwhile just doing the same play therapy over and over. The play therapy has been great for Zoya's language skills, but has not done a whole lot for speech skills. I don't really like anything about the "wait and see approach" since she already waited the first 22 months of her life with no therapy. I've been pretty frustrated with speech therapy to say the least....up until today.

Today we drove to Buffalo, an hour and 45 minute drive, to meet with a couple therapists who are trained in the PROMPT speech technique. For the first time I felt lots of hope for Zoya's speech progress. These ladies are amazing and so knowledgeable about speech in general, and specifically apraxia. They are highly trained and LOVE what they do. They are in it to HELP kids and want to see progress just as much as I do. It is not JUST a job for them. I could tell that even before I met them, just talking on the phone to them. One of the therapists has a son who was diagnosed with apraxia and the other therapist was her son's therapist so they make a great team. They do all the evaluations together and then we will work with just one of them for therapy. They were shocked to hear that during the school year Zoya will only get speech therapy once a week for 30 minutes....and that is not all one-on-one either. They both work in early intervention through preschool age and said if we lived there Zoya would definitely get speech therapy through the school THREE to FIVE times a week! I said, "Well I guess that's why we are here." And they said, "Well I guess that's why out state is bankrupt and yours isn't." HAHAH.

They pretty positively told me that Zoya's speech is NOT following a typical development pattern that you would see in most children with DS. They saw many signs of a motor planning disorder such as apraxia. They were impressed with her jaw strength and muscle tone so we do have that going for us! There were lots of things she could do that they were very impressed it wasn't all bad news.  Although I could care less about whether or not she is diagnosed with apraxia, I DO care about the techniques that should be used with her based on the fact that she is likely apraxic. Traditional play therapy techniques do not help apraxia. Zoya tolerated the PROMPT technique very well and I have high hopes it will help her learn to speak. They don't solely do the PROMPT technique, they have some other tricks up their sleeves, but their overall approach REALLY impressed me!  She may never speak in full sentences (or she may) but she can definitely learn some functional language to communicate her way through life. When they said there is a motor planning disorder, I had a brief moment of sadness and got a lump in my throat and wanted to cry, but I got over it quickly and was almost relieved to hear someone say what I already knew. Mamas should always trust their instincts. So now that we've got an idea of the problem and a way to help it, I feel a lot better. The only problem is that it will not be fun driving an hour and 45 minutes one way once a week. It is also private therapy and out of state so that means insurance won't cover it. So I told Shawn he needs to sell more drugs (no worries, he is a pharmacist, so he legally sells them!).

I'd love to hear from other DS Mama's about what their kiddos receive as far as speech many hours/sessions per week and any specific techniques used? What has been helpful for your children in the speech department? Other Apraxia/DS Mamas out there? My next topic of research that I'm just starting to dive into is Augmentative and Assistive Communication Devices to help be her voice in the meantime.


  1. Lots of good information in this post. I am definitely going to look up the PROMPT technique, I've never heard of it before. I'm glad to hear that you're finding other avenues for help. That drive oh boy not fun at all...

  2. Glad you got some answers to your questions, and some good information. Hard to believe there isn't anyone in PA who can help! Good luck in your search, did you contact any private practioners now that you know what the Buffalo therapists have said?

    Sue M.

  3. Belle is significantly delayed in all areas especially speech. But just for reference Belle will continue to have speech therapy one on one in the home 2 times a week. In September she will have speech therapay in the home 3 times a week. Belle is only able to imitate ba, ma and an occasional da. I know therapy is helping Belle and I am so grateful that we are able to have this service in our home!!!

  4. My brother is 36 (DS) and he just go diagnosed with apraxia. I think if they would have made this connection when he was younger his speech would be so much better.

    SO happy Zoya will benefit from the knowledge we have now!

    Brooke Annessa

  5. when I began reading I was thinking on telling you about PROMPT! lol well glad that you got someone near of you! Here in my city PROMPT is way too expensive!! but the certified therapist from PROMPT institute is coming in a couple months and Elias' ST is going, so hopefully we will be able to get it in a cheaper cost :)

    I've seen several kids with DS and Apraxia getting much better speech after prompt :) so im sure Zoya will get much better with it :D

  6. Hi Zoya’s mommy ~ I have been quietly reading your blog for quite some time and it’s a long story as to how I discovered it…perhaps another time. Just know that I’ve been praying for Zoya and her friends on Reece’s Rainbow for a while. I finally felt a strong desire to connect with you after this post. Yuppers, I am a speech therapist! First and foremost, I wish I lived closer to you so that I could be Zoya’s private speech therapist!! She seems like she would be such a pleasure to work with…and of course the most awesome parent support ever!!!!
    AHHHHH it’s the good ol’ A word. In the world of a speech therapist that often proves to be the most frustrating type of diagnosis. It is perhaps just as frustrating for the therapist as it is the parents to hear. I completely applaud you for doing your research and finding these wonderful therapists whom are trained in PROMPT. I myself am not trained, however have heard wonderful things from a colleague of mine. I primarily do assessments and certainly miss the days when I had regular treatment sessions with my kiddos…(ok most days. LOL).
    So here it goes, a little advice. You may take or leave…
    Providing feedback is crucial for children with apraxia. However, children with Down syndrome often have trouble correcting their mistakes. Once Zoya has said something in a certain way, it is very hard -maybe impossible- for her to change how she says it, even when she’s reminded how to say it. At home instead of correcting Zoya when she is spontaneously speaking, or attempting a targeted sound/word, take note of her production. Then a few minutes later, set up a context where that particular sound/word will occur. That’s where the play comes in. For example, using a sign or a sound cue for the word you want can help her bring it forth. Use of a puppet or stuffed animal is also helpful. If Zoya can't come up with a word, you may say, "Let's have Elmo help." Then hand her Elmo and demonstrate the correct production. Always be careful to accept what Zoya can offer at the time. It isn't stubbornness or laziness that prevents her from getting a word out. For whatever reason, she is unable to, at that time. I think it is crucial for children with Down syndrome to get very frequent, repetitive practice with their words in order to maintain them. That of course is where a wonderfully supportive mom and dad come in! Remember, that you as parents are part of the team. You are Zoya’s first teachers! Having said that one of the roles of the speech therapist is to provide the parents the tools to be successful at home. I am not here to suggest that is not the case, just encouraging a fellow colleague/s in the profession to follow thru on that for mommy (whether it’s private or school based therapists).
    Just remember mommy, Zoya is one bright cookie and she certainly has a lot going for her. I am so happy that you have the time and the resources to dedicate to provide PROMPT therapy from these phenomenal women. I have no doubt that she will make great gains. As you begin this part of her treatment keep in mind the big picture, what is your overall goal for Zoya’s communication? I often encourage my parents that the more treatment the better!!! We are a team…a team effort it should be!! Perhaps you can focus on the speech (intelligibility) component during her private sessions and incorporate more language and communication goals for her IEP.
    Also, I noticed you were interested in learning more about Augmentative Communication/Assistive Technology. Have they mentioned Pictured Exchange Communication System (PECS)? Does her classroom utilize the TEACCH method? Were you thinking of those low-tech options or more voice output devices? Just wondered, I love the idea of supplementing Zoya’s communication that way.
    By the way, you’re doing an amazing job mom!!! Zoya is positive proof of that!


    Paul Vincent had a very hard time with speech. I kinda self diagnosed him with some degree of Apraxia. After seeing a ST for 2 years, 2 times a week, we were able to test out of speech therapy. He does great now... But at 18 mo he was tested at a 9 mo level! A full year behind. He had all the issues you describe. He could not move his tongue on command. He was able to start with animal sounds, then progressed quickly after starting with the Apraxia flashcards. The therapist made a HUGE difference. Also, going to preschool with peers helped a lot. He was much more willing to work for them! LOL

  8. I feel you on the long drives! It is a 2 hour drive (one way) to Claire's private ST and PT. We try to do them on the same day (they are both once a month) but that doesn't always work.

    The ST we have is awesome. She is both Talk Tools and Prompt trained. Love all of the great ideas she has! Hope the new ST works for Zoya.

  9. I'm so glad you found a prompt instructor. It really makes a difference. Although Kallen was a bit annoyed when we started, he will now do the prompting motions himself. Our language, Afrikaans has a more distinct pronounciation than English. Some is very similar to Russian. I hope that you will post some photos and information on what you're doing. But don't loose hope and become discouraged. Kallen turned 5 this year, and his speech is really blooming and becoming clearer

  10. I'm not a DS mama (yet!), but my oldest son was diagnosed with apraxia several years ago. He had three years of ST, sometimes twice a week and sometimes five times a week depending on what stage of the process we were in. He is now doing amazing and has no speech issues. It's a long road, but so worth the work. Good luck with Zoya's speech - she's a cutie!

  11. Hi there. Came across your blog and thought I'd tell you about an app for the I-Pad or I-phone called Proloquo. I teach sped and use it with my apraxic students. Google it and check out the website.

    P.S. I graduated from the Hurst too and adopted from Ukraine too!