apraxia of speech--your experiences

[Anonymous]

Hi,

Our daughter seems to have many signs of apraxia of speech, according to her SLP (we started 1 month ago). She is 22 months. She has no other developmental concerns at the moment (including hypotonia or other dyspraxic signs). I am reading "The Late Talker" and trying to learn as much as possible about this condition. I have questions and was wondering if those who had kids with apraxia could chime in. Currently, we are considering whether to put her in a daycare or soon a preschool program in part because we can't afford our nanny and speech therapy (not covered at the moment--we were denied coverage by EI, but the SLP thinks that at the next evaluation she will be clearly in need of services) and in part because our nanny doesn't drive and can't take her to therapy and its becoming an issue with work.

1) when was your child's dx made versus when did you first notice issues? did anyone turn out not to have apraxia but other language based delay?
2) how often did you do ST and where?
3) did you send your child to a special daycare, preschool or other school that offered extra services and if so, which one? did you have early intervention involved in services or did you have to pay on your own? If you went to a regular public or charter school, were you happy with services offered?
4) has your child 'caught up' or is catching up and at what age? as your child has grown older, are there other related challenges (reading? auditory processing, etc?)
5) did you use fish oil supplements and notice a difference? if so, which ones and how much?
6) did you consult a developmental pediatrician, neurologist or geneticist? I ask about the latter because this is child #2 with a neurological issue of some sort, and we are wondering whether genetic testing is warranted.
7) do you have other kids with neurological issues? (sibling has adhd, probably, and possibly dyslexia).

if you have anything else to share, I'd be grateful. Thank you.

[Anonymous]

DS is 2.5 and too young for a formal diagnosis, but we have proceeded as if apraxia is the diagnosis.

We noticed issues before 18 months, there was absolutely zero speech and no approximations, at all. But we started the eval process at 18 months and everyone agreed that he was significantly delayed. We immediately began ST once a week and then bumped it up to 2x a week. Once we went to 2x a week, we really saw significant improvement. He is still behind, but he is catching up and is now verbal -- probably at the level of a typical 18 month old. We hope he will catch up by K, if not before. There are no other issues that we are aware of. He had significant feeding issues until recently. He's an only child, so no other kids with issues.

I'm a SAHM, so I ferry to appointments. We plan to enroll him in regular preschool and continue with ST.

[Anonymous]

We noticed issues by about 14-15 months. We had private and EI evaluations at 19 months. We started private speech 1x/wk with a PROMPT certified instructor and EI speech 1x/wk with a therapist who had a fair amount of PROMPT training (but not certified). Progress at first was extraordinarily slow--I remember working on the word "on" for months. DS has never been formally diagnosed by a dev ped and his private therapist won't officially diagnose but apraxia has always been her working diagnosis. We pay out of pocket for private therapy with no reimbursement. We started the fish oil regimen from The Late Talker around the same time we started therapy, and I did feel like it made a difference in the first year or so. He is off it now because I saw no regression the couple times I pulled him off of it and then put him back on in the last year or so.

DS is nearly 4 now. His progress has been remarkable. We stopped therapy through EI when he turned 3 because both his EI and private therapist were sure he wouldn't qualify for preschool services for speech. We continue with private therapy, but he is doing so well that we periodically take therapy breaks (like we took the summer off from therapy) because his therapist is so pleased with his progress. She expects that he'll be done with therapy by the time he starts K.

He has always been in a typical daycare/preschool without problems. He does have other issues that are becoming more noticeable as he gets older even though nothing else really showed up when he was younger (sensory issues, issues with fine motor skills, attention issues, some broader motor planning issues, very late toilet training, etc). He started OT this past summer. For those reasons, we're finally seeing a dev ped at KKI next month to get a sort of global opinion on everything and so we can start thinking about what type of school environment will be best for him. He has an older brother who is in 1st grade in private school, and we're not sure private will be a good fit for younger DS. I do expect that younger DS will have learning issues crop up once he is in school because, while we were hopeful in the beginning that we would just deal with the speech issues and just check that box, it has become more and more clear that there are other things going on, and I expect those other things to get more and more noticeable as he enters school. Older DS has no known issues at this point.

[Anonymous]

Friends had a little girl with this condition. Therapy patience and all the specialists you mentioned helped with a road map to treatment. The child was one of twins. The other twin was lost early in pregnancy and one neurologist suggested the condition was connected to that. That part of the brain was changed and neuro connections were lost that over time can be remade in new pathways.
Because age is critical (developing brain) push for as much therapy and intervention as early as possible

[Anonymous]

I have an 8 year old who had an apraxia diagnosis. He received that diagnosis at about 27 months of age. We live in MoCo, so he qualified for a weekly home visit from a county speech therapist, and then he did private speech therapy (which we have always paid out of pocket for) twice a week.

He started a part time "typical" pre-school program at the age of two. At the age of 3 he started MoCo's part time expressive speech pre-school program and did both of these program's until he started Kindie. When he entered the county's pre-school program, we dropped the private speech therapy to once a week. We continued once a week private speech therapy until he entered kindie as well. He continued with once a week pull out speech services with the ES speech pathologist through the 1st grade. At the end of his 1st grade year, the school dropped his IEP, and we did not fight it. He never had academic issues, and hated being pulled out for the speech therapy.

His speech is not perfect, but he is mostly understandable-- there are still times that I have difficulty understanding a word he is saying. I don't think he'll ever have a career in radio. My husband and I have discussed sending him back to private speech therapy, but he is very resistant. People who don't know him do not notice any speech issue-- and it has never impacted his ability to learn, make friends or his behavior (which was why the IEP was dropped).

He has no other neurological or developmental issues. He has two older siblings that are completely neurotypical and never had speech issues (they are girls). I did do the fish oil for a short period of time, but do not feel it really helped. Our private speech pathologist said that she felt it really made no difference, but did not discourage it (it isn't going to hurt anything).

My thoughts on this whole process. Probably the most useful program for him was the expressive speech preschool program. His speech and vocabulary improved, and most importantly his confidence.

I have no idea if the thousands we have spent on private speech therapy helped. I do think a lot of it could be done at home, if you stick with a plan and are dedicated.

I would try and find a nanny that can drive, so you at least have private speech therapy as an option. It will also give you more flexibility with pre-school programs. I was a sahm when my son was doing all these therapies.

[Anonymous]

My DD has severe apraxia. She turned 3 a few months ago. She also has hypotonia and mild dyspraxia.

1. She's our oldest, so we didn't have much to compare her speech to. Her regular ped raised the possibility of a problem with speech just before 17 months. She started PT and ST at 19 months. SLP suspected apraxia at 21 months.

2. She currently does 3 hours of ST/week. For a while we had her at 4 hours/week and we'd like to get her back up to that again -- it's just a matter of logistics and cost right now.

3. We sent her to 2 year old preschool and I think it helped a bit. It was Montessori based, though; if I could do it over I think I would have chosen play-based because it makes offers even more opportunities for speech. For much of last year she saw a private SLP who came to her private preschool and saw other kids and her individually. She would also see an EI SLP 3 x/week at home. She qualified for EI at 30 months (we initiated the process late).

4. In 1.5 years of therapy she has gone from not being able to imitate any sound at all and referring to everything as "ba" to having a small collection of absolutely clear words, being able to approximate many more, and even stringing words together for phrases and short sentences ("I want juice please" or "monkey bars please") even though they are very tricky for her. She is catching up, but it feels like the target is always moving (b/c her peers at always advancing, too, of course). Other issues do seem to be popping up -- she seems to have some sensory issues, although nothing unmanageable. Balance and coordination are challenging (think riding a trike, hopping on one foot, etc.). It's too early for us to tell about reading (although she's very excited about learning) and her SLPs assure me that they don't pick up any aud processing issues, but I still worry about that a bit.

5. We use fish oil and I have no clue if it helps or not, but it doesn't seem to hurt. She is delighted to take her fish oil every day -- we use Barlean's Omega Swirl.

6. Her ped referred her to a dev ped at 17 months, which is when she was dx with dyspraxia. Having this diagnosis made her automatically eligible for DC EI services, although we didn't know it. Having an apraxia dx does too, although it's a catch-22 because SLPs usually don't officially dx apraxia until age 3, which is when EI ends here (for now anyway). We think the dev ped was good for the initial dx but we're thinking about finding a ped neurologist who can help us keep an eye on her in the coming years.

7. We have a younger son -- NT as far as we can tell, but it's early to know for sure yet.

Have you gone on apraxia-kids.org? I found it and their FB pages really helpful and supportive. I also liked the book "Speaking of Apraxia" -- kind of gave a roadmap, which was something I was looking for at the time.

[Anonymous]

Our third (and youngest) child has low tone and started in EI at 15 months because he struggled to pull himself up into a standing position (he wasn’t anywhere near walking). He’d met all other milestones on time and a speech eval at that time showed he was age appropriate. By the time he was 20 months, that was no longer the case and he started ST at 24 months. His non-verbal communication was excellent.

Progress was excruciatingly slow. Like a PP, we’d work on a single word for months. We taught him sign language and, counting the words he could sign he was on track for language acquisition. The SLP suspected apraxia at 28 months but indicated a formal diagnosis wouldn’t be made until he was at least 3. He made much better progress once we switch to a PROMPT certified SLP – and it wasn’t because the other SLPs weren’t good. They were but PROMPT was a far more effective approach.

The PROMPT certified SLP suggested therapy 2x/week. Because of fatigue issues, the sessions were initially only 30 minutes each. As his stamina improved over time, the session length was increased.

DS was evaluated by developmental pediatrician at age 3.5. He confirmed the diagnosis of apraxia and MERLD. We have a strong family history of ADHD (inattentive) but DS couldn’t be diagnosed until he was @7 because of language/communication issues. It was too difficult to determine if his inattention was due to his communication/language issues or because of ADHD. We’ve confirmed the ADHD but communication/language also plays a role.

DS was found eligible for a FCPS special ed preschool (non-categorical). He started when he was @2.5 and it was fabulous. It was far easier to get him in the special ed preschool than it was to get his brother (then in K) assessed by the IEP screening committee even though we had LOTS of private reports indicating delays. That brother also has ADHD (inattentive) and hypotonia but to a much lesser degree. We saw no need for genetic testing. These disorders are highly heritable but genetic testing didn’t seem warranted.

DS is now in 2nd grade and apraxia is not his greatest challenge – it’s MERLD. DS is solidly average in non-verbal intelligence testing but is below grade level in reading and math. DS has some social challenges because he’s unable to keep up with more complex conversations with his peers but he’s well liked. He has strengths that are valued/appreciated by his peers.

We use fish oil supplements (Nordic Naturals) and multivitamins but have noticed no improvements that we can attribute to them – but at least they don’t’ hurt.

[Anonymous]

OP here, thank you for all the detailed response. Its very helpful as we move forward and try to learn more about my daughter's challenges. SHe will not be eligible for a DC preschool for another 2 years, but we will look into easter seals and other programs where she might get some extra support. the Montgomery county expressive speech preschool does sound interesting--we have considered moving for schools anyway but my son just started a charter school we like.

[Anonymous]

Anonymous wrote:OP here, thank you for all the detailed response. Its very helpful as we move forward and try to learn more about my daughter's challenges. SHe will not be eligible for a DC preschool for another 2 years, but we will look into easter seals and other programs where she might get some extra support. the Montgomery county expressive speech preschool does sound interesting--we have considered moving for schools anyway but my son just started a charter school we like.

At three look at U of MD LEAP program. It is the best around. It is reasonably priced but transportation may be an issue.

[Anonymous]

The GWU Speech and Hearing Center is also a great resource. It may be worth it to have Prof. Kumar's clinicians do an eval on your daughter.

Check out CHAMP Camp next summer - it's an intensive therapy program that does wonders.

http://departments.columbian.gwu.edu/speechhearing/

CASANA is also a great place to get started - http://www.apraxia-kids.org/

[Anonymous]

Op: Could you please share what you decided to do for your daughter and how she is progressing now? I am in a similar boat as you were 2 yrs ago. My DS is 30 months old, was recently diagnosed with hypotonia and dyspraxia. We've been doing PT and ST 1x week (using a non-prompt certified SLP) since he qualified for EI services 8 months ago. However, we are looking to bump ST up to 2-3x week with a prompt certified SLP given his DX. Since DS will be turning 3 in the fall, I also need to consider what preschool would be right for him, hopefully one that is focused on speech development. Thanks in advance for any tips you can share!

[Anonymous]

I have a 13 year old whose CAS is resolved. Was in treatment starting at 18 months. Doing great in school now but got lots of support in elementary school (attended a DC charter school). No one who meets him now ever suspects he had a speech disorder but he does have an odd 'accent.'

Second the above recommendations for LEAP preschool, GWU's clinicians and the apraxia kids (CASANA) website and Facebook group. The more therapy you can do the earlier the better.

Watch for reading / decoding / spelling issues. A neuropsych exam in 1st grade or so may help you get ahead of other neurological issues your DC is at risk for such as adhd and other learning issues.

[Anonymous]

11:56 here. I know you didn't ask for an update from me but will give one anyway . Apraxia still isn't DS's greatest challenge, it's the MERLD. However, in unstructured situations or in spontaneous speech, DS's intelligibility, cohesion and sentence structure still breaks down. Not as bad as it was but still quite noticeable. He did NOT have issue with decoding and, in fact, decoded above grade level. However, comprehension was below grade level. It wasn't until he received support in all academic environments that he met grade level expectations. We spent thousands of dollars for an advocate and IEE to get the support he needed.

In hindsight, the PROMPT certified SLP was an excellent choice. Working to keep DS engaged and positive has also been key. If he's not feeling good about himself, he's not open to learning. We work hard on it. It helps that he's got older siblings and none of us make fun of his speech challenges.

[Anonymous]

For those who recommended LEAP preschool but also did private ST sessions with a PROMPT certified SLP, I assume that there was no issue for your DC with the preschool using a different approach versus the SLP? I heard that the U MD LEAP preschool does not follow the PROMPT approach, is that correct?

[Anonymous]

PP with 13 yo again.

Prompt is one approach to treating CAS and works with many kids. But there are other techniques too. And the best Prompt trained therapist has a variety of tools in his/her toolkit to utilize as warranted.

Over the years we had several therapists and they used different approaches at different times. Prompt helped a lot but wasn't THE silver bullet.

LEAP is especially great to build early literacy skills in kids with a variety of speech language issues and make sure they have the phonemic awareness needed for K and beyond. But it is a part-time preschool program and there are breaks for the university vacations. Also the clinicians are students so there is turnover.

We asked the LEAP clinicians to work on a particular set of issues (expressive language, length of utterances, descriptive language and social skills) that emerged as he gained more speech. But we continued to have our private Prompt-trained SLP responsible for most of the articulation work (2 sessions per week). The therapists knew about each other and shared reports and treatment plans at our request.