Does Anyone Else Have a Child with Apraxia of Speech?

Updated on November 05, 2009
T.R. asks from Saint Joseph, MI
16 answers

Hi,

My beautiful three and half year old girl was diagnosed with severe Apraxia of Speech about six months ago and I am really struggling with the reality that no one can tell me for sure if she will ever talk or how well she will if she learns how. My daughter speaks to me with sign language and by showing me what she wants, but she cannot verbally produce any words except for mama, dada, nana, papa, and bus. She understands everything going on and follows directions well, she just can't verbally express her own thoughs. Apraxia is a disconnect between the thought in the brain and the muscles of the mouth/throat... so she knows exactly what she wants to say, but the words just don't come out or at least not without a great deal of struggle. She currenlty attends a speech therapy specialized preschool 5 half days a week that has been very helpful, but she is the only child in the class that cannot produce words. I was just wondering if anyone has any personal experience with Apraxia of Speech and if you wouldn't mind sharing it with me? I don't know anyone else who has a child with Apraxia and would love to here if you have advice or insight on what I should expect. If there was anything that really helped your child progress I would be very grateful to hear from you.

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A.P.

answers from Detroit on

I actually have a friend in the area dealing with this with her 3 year old. I could ask her if she's willing to email about this. I know it has been frustrating for her.

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B.

answers from Detroit on

My son was also diagnosed with apraxia when he was about 2 years old - he couldn't say anything. Needless to say, there was lots of frustration on both sides! The thing that helped us the most - beyond the speech therapy - was using the sign language. For therapy, we did public speech therapy (one on one) through the school district. We also did private speech therapy - using our medical insurance. Because the diagnosis was actually a medical problem (apraxia is a neuroligical disorder), our insurance covered it -- check with your insurance. Even if your insurance doesn't cover it, I would still recommend finding another 'private' source. Depending on where you live, you can find some reasonably priced programs - specifically for the summer at local hospitals. I used North Oakland Medical Center
###-###-#### in Pontiac - since they are in an econmically depressed area, they had a really good summer program - x number of sessions for x total dollars.

One key thing from therapy that we learned is REPETITION, REPETITION, REPETITION! You can't say the words enough for them - and reward them when they are trying. You actually have it a little easier since she can already say some words (we had to deal with getting my son to learn to vocalize also!). Just keep working on it - and make sure that she is vocalizing every time she uses a sign - she may try to just use the sign language since it's easier for her - but force the issue until she makes a sound when asking for something using the sign.

Additionally, your speech school teachers ought to be able to give you some 'homework' / tips. One of the games we played a lot (at home) was the 'honey bee tree' - we were able to make the 'buzzing' noise everytime we shook a bee loose! If you are interested in this game, I still have it and would be happy to ship it to you - you pay the S&H. Or, you can still buy it at Toys R Us, it was around $20.

I know it's hard suffering through this - and not knowing if your child will learn to talk - been there, done that (we had euphoric days when he'd say a word - and MANY days we hit rock bottom and couldn't stop crying!). I can't say that your daughter will talk, but take heart - my son was discharged from speech when he was 4.5 years old and is now in Kindergarten and noone has any idea of his earlier trouble. Good luck, stay sane!

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H.B.

answers from Detroit on

I don't have any experience with Apraxia of Speech, but when my son was three he did need some speech therapy. I had great success with Beaumont Hospitals program! They really had a wonderful staff. There was alot of interaction between the therapist and parents. You could observe the sessions or have them taped so you could reinforce at home what they worked on in therapy. Although my son was only there for a short time other moms with children who had more serious conditions spoke very highly about it as well. I wish you well.

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A.R.

answers from Detroit on

Hi! Wow - this question hits right at home w/ me! My daughter just turned 2 and we've been struggling to figure out why she doesn't talk! We have been to 3 doctors now and each have said she is just stubborn, that we don't force her to talk, and that all kids develop differently and not to worry because there are no other delays. They have all said to just be patient and that speech therapy would do no good at this young of age.

Through this great website...I found out about the Early On program and called the ISD to get her evaluated...we've had that completed last spring and their conclusion is that she was not bad enough to warrant any services...they did mention the possibility of apraxia - but wouldn't even write the word down for me to look up!! our caseworker said it was too early to diagnose so not to worry...at least now i have the spelling and lots more to find out on the internet!!

currently she's had a big breakthrough...she now can say almost 15 words and is starting to try to talk a bit...we've been thrilled!! we've also taught her some signs, but have been hesitant because we've had differing opinions on whether it helps or not from doctors...but seriously - how can you survive w/o at least some communication??!!

sorry i have no advice for you...i wish you all the best...thanks so much for the question - i have learned tons!! am very interested in the other responses...good luck, A.

also - if anyone does have some helpful suggestions on how to get help for my daughter - we live in genesee county - any advice is welcome!! i know my insurance does not cover speech therapy so i'm afraid of what's ahead...

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K.V.

answers from Grand Rapids on

I have a son who we think may be apraxic but it's so hard to know. He is also deaf (has cochlear implants) and has Down Syndrome so cognitively he's about 2 years old even though he just turned 6. He went to an amazing oral deaf school for several years and although his classmates could all produce sounds and talk, he could not. He has words and sounds that come and go. The only word that has consistantly stayed in his vocabulary is "more". We use sign language with him and he has a 60-80 word expressive vocabulary. I don't have any advice just know you are not alone in your frustration of the unknown...

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M.S.

answers from Detroit on

Hi T.,
My son was in speech from age two until this year at age 7 when he tested out. He had delayed speech. In his two, three and four year old classes we had the same little boy who we became good friends with. He has Apraxia.
He is the same age as my son 7 yrs. He speaks with a board.
He can make some sounds that his family understands.
He is sweet as can be and is just a dear. Like your daughter his comprehension of language is great he just can't produce the sound. I know this is not giving you the information you are searching for. But this little boy is
in main stream classes with the help of an aid and doing well.
I hope you find the answers you need.
I wish you all the best.
M.

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T.L.

answers from Detroit on

My son has severe phonological disorder and has been in individual speech therapy since he was 3 yrs old (he just turned 4). Anyways...we go to Beaumont Pediatric Speech and they are so wonderful! My son has seen the same speech pathologist this entire time and has really shown improvement. I am lucky b/c my ins covers it in full, so if you have ins check into what your coverage is. I live in Grand Blanc and make the hour long drive every week, but it is worth it.
Good luck..it is a long road and there have been many times that I get very discouraged but it just takes alot of work for a even the smallest improvement.

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K.M.

answers from Detroit on

Hi T.,

I had to respond to you because I have a 5 1/2 year old boy with speech apraxia. I was totally scared once I got the diagnosis because I went on the internet and researched it. They could not tell me his prognosis. I think it is too early for them to know.

About my son. He was about 3 when he was diagnosed. They did not tell me if it was severe or the level of it just that he had apraxia. On the internet they told me the causes could be prematurity (my son was 9 weeks early) and it is found in children on the autism spectrum. So that freaked me out plus his preschool teachers told me he had autistic tendencies. Come to find out after $3,000 spent at the psychiatrist, that children with apraxia tend to have tendencies but it is the pragmatics that an autistic child lacks. So needless to say my son did not fall on the autism spectrum.

I will let you know how he is now and then fill you in on the progression. He is 5 1/2 now and in general kindergarden. He does receive speech, PT and OT through the school system. If you met my son, you probabally would not know that he has apraxia. It is pretty subtle right now. Sometimes he may miss or substitute a different sound in a word. Basically his speech therapist made a comment yesterday on something that he did and she said it is one of the residual effects of apraxia.

Now the history.... Sorry for the novel.

Things I have learned with the apraxia.
1. Effects his gross motor skills along with his speech. He does not know where his body is in space. Example most of us can walk with our eyes shut and put one foot in front of the other. My son can not. He has to look and watch as he puts one foot in front of the other. He never was the kid that would run and just jump off something. he had to stop and you could see him try to figure out in his head how to do it. After a while it becomes rote and he doesn't have to think about it anymore.

2. He is very visual and needs both visual and verbal ques. Now that he is learning how to sound out words and spell them he needs a visual que like legos or lines for each sound to help him figure it out.

3. He has had problems with sentence structuring and filling in the details. He has a hard time expressing his thoughts. I would have to piece together short phrases to figure out what he was saying. His social skills were behind due to this. He would not give alot of detail when talking about something. Now he can go on and on about something. We are all amazed.

4. Apraxia is difficulty with sounds. He may say the letter L at the beginning of a word but it is hard for him to say it in the word play. It might come out pay instead. We just correct him and work on words like those. He will substitute different sounds for words. example is zoo he will say soo sometimes. We tell him to turn the sound on.

5. He used to get very frustrated with speaking. He could not say yellow. It was sayo instead. We kept correcting him so much, he stopped using the word all together. Now he is saying it correctly.

6. There is alot of frustration with writing He does tend to get frustrated or overwhelmed with tasks. They need to be broken down for him. I am not sure if this is a personality thing or something to do with the apraxia.

Sorry there is sooo much here but with 2 1/2 years of private Speech and PT plus being in the school district since he was 22 months. I believe that the private speech therapy helped more than the schools. The schools are good secondarily but they do not provide what a child needs that has speech apraxia. Most of the time they are put in classes with other kids with special needs and they don't have time to focus on your childs issues.

Blue Cross Blue Shield will tell you that they do not pay for speech for children under the age of 5. That is not true, they will pay for speech if the child has apraxia. You might have to fight them, but they will pay. Trust me. I have not paid for 2 1/2 years of private therapy.

There are 3 good places I know of for private speech therapy.

1. Abilites Center in Walled Lake. This is speech therapy through play. Teaches you how to incorporate speech into everyday activities.

2. Kaufman center in West bloomfield. Uses the repetitive technique. Most kids don't like it but it works!

3. Kids in Motion in Milford. I don't know too much about it but it has good recommendations from the staff in the schools.

I hope all of this helps a little bit. You can work on it and she will be able to speak one day. It's alot of hard work and time but you can get there. Sign language is the first step!

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S.C.

answers from Detroit on

Hi T.- My son (almost 3 yrs) also has Apraxia of speech and is basically the same as your daughter. He has very limited words- he saids basically nothing on his own- you need to make him say it. He goes to the Kaufman center in West Bloomfield 2x per week- started in Sept. He is progressing a little- more words just not on his own. However- I do have a question on where your daughter goes to the speech therapy specialized preschool? I think this is a great idea for children w/ speech problems. Please let me know. Thanks

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L.B.

answers from Detroit on

Hi T.,
My daughter is also diagnosed with speech apraxia. We received our diagnosis at age 2 and she is 2 1/2 now. We have been attending individual speech therapy through Beaumont children's rehab. in W. Bloomfield for approximately 6 months with great success. The individual therapy was a great start and she will then progress to a specialized preschool at age 3. I also wanted to let you know about something that has really worked for us...Fish Oil. After a lot of research on apraxia, i have found good documentation that fish oil is beneficial. Specifically we use Nordic Naturals ProEFA. You have to order it from the website, but it has made a world of difference. We started therapy first and added the fish oil 3 months in and wow - even the therapist noticed a difference. If you would like any additional information on this, please let me know. Hang in there. I know many children with Apraxia who are in elementary school now and you would not ever know they struggled.

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P.R.

answers from Detroit on

T., people from all over the country bring their apraxic children to see Nancy Kaufman at Kaufman Center in West Bloomfield. She even sells an apraxia kit.

Have you read any of the information about Omega 3's (fish oil) and speech/talking? I believe the book, "The Late Talker" contains that info. Be sure to check w/ your ped before starting any supps. I'm not not a doctor--am just a mom.

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K.M.

answers from Saginaw on

My son just turned 5 in October. He started seeing a speech therapist around age two because he didn't use any words or really make any sounds. At age three, he was diagnosed with speech dysprexia. After looking that up online, I found that it is the same as apraxia of speech, just an older term that isn't used so much anymore. After 3 years of individual speech therapy, he is now in kindergarten and attends speech therapy in a small group. He has had MAJOR improvements in the past few years. He is still not completely understood by people other than our family, and there are certain sounds that he just cannot make, but he is doing so great! Since starting kindergarten, his speech therapist has been working with him on the g sounds. He can actually make the sound now, but only alone. If there is a word, like great for instance, he says r-reat. But if he focuses on the g, he can say it, but now combined with the rest of the word.
We started his speech therapy with the Saginaw public school district by recommendation of our pediatrician. He saw the same therapist for the first two years. Her name is Mindy Irwin. She is with the Early On program that a previous poster mentioned. She was so great! Last year, during preschool, he saw Kelly Mason, who sadly did nothing to help him. It was a struggle for him to be there and he did not improve at all from her techniques. This year, he is seeing Mrs. Davies (can't remember her first name) and she is actually one of the first people who evaluated him when we first were looking into treatment.
I don't have any suggestions that would help. I wish I did.

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B.T.

answers from Detroit on

Hi T., my 3 1/2 year old twins have severely delayed speech. I know this is so frustrating, it has been very difficult on us. Although they are not diagnosed with apraxia, I though it would be helpful to share. Our boys started using sign language when they got into early intervention at 18 months, and signing was a godsend. They love the "Signing Time" videos too. Now they do produce words and some short sentences but can be very difficult to understand, sometimes it is like translating a foreign language. Anyway we are moving from Chicago and they will get speech at school, but we are also looking into some intensive programs, depending on what insurenace will cover. I took them to the Abilities Center (in Walled Lake, outside Detroit)and will probably get them services there. They have private and group speech and other services and seemed very supportive, you can check their website. Also I am eager to meet some other families with the same challenges.

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A.W.

answers from Detroit on

I have an almost three year old who may have apraxia (it can officially be diagnosed until sometime between three and four.) Have you gone to the apraxia-kids website? It is fantastic! We go to speech therapy through the Intermediate School District. However, in addition we see a private speech therapist. We love our speech therapists at the ISD, but my son did not make any real progress until he started with the private speech therapy. It is not cheap, but our insurance covers some of it. Plus, we will scrimp in other areas if we have to. We go to Lesley Boykin at Let's Talk Kids in St. Clair Shores. She is fabulous! Check out her website as well! Good luck and God Bless!

By the way, where are you? If you live close (I am in Mt. Clemens) and would like to get together, let me know!

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E.C.

answers from Philadelphia on

My son is 4 and was recently diagnosed with dyspraxia. I was referred to a medical nutritionist named Kelly Dorfman. My first phone consulation is this afternoon. She is getting excellent results with supplements and nutrition for the apraxic chilid. Check out the articles on her website: www.kellydorfman.com

I am also taking my child to A Total Approach in Glen Mills, PA: www.atotalapproach.com They gave me the referral to Dorfman.

Hope this is a blessing to you and your family!
~E.

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C.P.

answers from Saginaw on

My son has gone to the Speech and Language Clinic at CMU in Mount Pleasant since he was about 2. He is now 10 and has shown major improvements over the years. I'm not sure where you are located but I'm sure there are other universitities that have specialty programs like CMU. They have been a godsend!!!

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