Those with Apraxia of Speech diagnosis--some questions.

smiling76

I guess I'm just looking to commiserate with others who had this diagnosis for their child.  When were they diagnosed and how?

Do you you see a regular pedi or a specialized one?

What have "they" said about the future of your LO in terms of their speaking capability?  I honestly don't know much--I mean, will he EVER be able to speak sentences and live a "normal" life?

My heart breaks just knowing he's a prisoner in his own body---his mind WANTS to talk, but he physically CAN'T.   I just cry thinking about it.  I know he's getting the help he needs but ugh.

ALSO-- is your LO in daycare at all???  My son goes to developmental preschool where he is getting help for this-but it's 1/2 day and then goes to daycare.  I talked to daycare today about it--but wonder what your experiences with a daycare center have been.

Any other resources you've tapped in to? 

ridesbuttons

smiling76:

DS is 2.5 and has been in speech therapy for nearly a year.  He started with zero words, zero signs; his word count now is good, he talks in sentences and is developing normally; however, due to probable apraxia he has significant omissions/substitutions and his labial sounds (b, p, f, v) in particular are difficult for him 

I guess I'm just looking to commiserate with others who had this diagnosis for their child.  When were they diagnosed and how? see above, suspected apraxia within a couple of sessions based on my observations/Q&A and his one-timing certain words

Do you you see a regular pedi or a specialized one? We have a GP; regular pedi has been consulted on 2 occasions for evaluations

What have "they" said about the future of your LO in terms of their speaking capability?  I honestly don't know much--I mean, will he EVER be able to speak sentences and live a "normal" life? GP/pedi have no opinions at all on his speech; SLP thinks that DS 'will get there, it's just going to take time' (paraphrasing from appointment review this morning) she is optimistic and quite delighted with his willingness to work and lack of frustration (he will try different ways to get the same thing done)

My heart breaks just knowing he's a prisoner in his own body---his mind WANTS to talk, but he physically CAN'T.   I just cry thinking about it.  I know he's getting the help he needs but ugh.  This is the toughest thing, isn't it?

ALSO-- is your LO in daycare at all???  My son goes to developmental preschool where he is getting help for this-but it's 1/2 day and then goes to daycare.  I talked to daycare today about it--but wonder what your experiences with a daycare center have been.  DS goes to full day preschool 5 days per week with mostly NT kids; he is doing very well there (preschool here is different as kids start junior kindergarten the year they turn 4)

Any other resources you've tapped in to? I'm Canadian so the services available to me are different, but yes.  I have someone come to our home once per week to work on speech in a different, more play-based way, it is also just a different set of eyes/ears for DS. 

BUmama

smiling76:

I guess I'm just looking to commiserate with others who had this diagnosis for their child.  When were they diagnosed and how?

Lydia was just about 2.5, which is on the young end for a diagnosis. She was diagnosed by her SLP, the other SLP in the practice and then the diagnosis was confirmed by her neurologist (for insurance purposes, we like to cover our tushies!).

Do you you see a regular pedi or a specialized one?

Lydia no longer sees a pediatrician, instead she sees the same GP DH and I see. We ran into problems with the pedi's not wanting to treat her because she had a seizure disorder as an infant/toddler. Even after weaning off meds and being seizure free for years they did nothing without consulting the neuro.

What have "they" said about the future of your LO in terms of their speaking capability?  I honestly don't know much--I mean, will he EVER be able to speak sentences and live a "normal" life?

Our SLP expects Lydia to stay in speech therapy through about 4th-5th grade. After that she should have the motor plans in place to manage. They have said that when very tired or agitated/upset she may slip back into some of her old speech patterns. But yes, she already speaks sentences and has a pretty normal life.

My heart breaks just knowing he's a prisoner in his own body---his mind WANTS to talk, but he physically CAN'T.   I just cry thinking about it.  I know he's getting the help he needs but ugh.

ALSO-- is your LO in daycare at all???  My son goes to developmental preschool where he is getting help for this-but it's 1/2 day and then goes to daycare.  I talked to daycare today about it--but wonder what your experiences with a daycare center have been.

Lydia goes to all day kindergarten and gets pull outs for speech and OT because she has some sensory issues and fine motor skill problems. The previous 2 years she went to regular preschool half time and being around NT peers has helped her tremendously. And her peers can interpret for the adults.

Any other resources you've tapped in to? 

We initially tried EI but we only qualified for 2 30 minute visits per month for which we were charged $50 per 15 minutes (our insurance didn't cover EI and in our state it's a sliding scale based on income--of course, they never take out the cost of care that you spend, just your base income. When we tried EI was when Lydia was at the height of seizures and needing constant eegs/med adjustments/specialist appts with all sorts of DRs and we just felt like we were not getting what we were paying for). After 6 months of EI I called our insurance and got a list of SLPs that they covered and got her in for an eval. This was when she was diagnosed.

She gets 2 45 minute sessions per week with a private slp, 2 30 minute sessions at school and 1 30 minute OT session per week at school. We've also done several social skills groups to help her prepare for school.

kcisthebombdotcom

I don't have this diagnosis yet, as my child is still too young to be diagnosed. It is likely he has it as he exhibits signs of it already, I had apraxia as a child and it's genetic.

I was in speech therapy until around 8, but I speak normal sentences, excelled in school, and lead a completely normal life.

We have opted to start daycare, but he only goes 8 hours a week for now. My provider has a masters in early childhood education and has a speech delayed child herself, so she's been a great resource in helping us learn sign language/help him communicate. Right now, we're still on the waiting list for EI speech therapy, but I am beginning to look into private therapy through my insurance provider.

GL with your DS. 

smiling76

KC_13:

I don't have this diagnosis yet, as my child is still too young to be diagnosed. It is likely he has it as he exhibits signs of it already, I had apraxia as a child and it's genetic.

I was in speech therapy until around 8, but I speak normal sentences, excelled in school, and lead a completely normal life.

We have opted to start daycare, but he only goes 8 hours a week for now. My provider has a masters in early childhood education and has a speech delayed child herself, so she's been a great resource in helping us learn sign language/help him communicate. Right now, we're still on the waiting list for EI speech therapy, but I am beginning to look into private therapy through my insurance provider.

GL with your DS. 

I hadn't heard it was genetic?!  That's kind of "good" in that my FIL was a super late talker--didn't say a word before kindergarden---and went on to be totally fine.  I had read that there's no known cause or perhaps a brain injury, etc.  So this is kind of good to hear  

Your daycare sounds awesome!!

BUmama

From what I understand, a good majority of children with apraxia will have a family history of speech issues. We knew that our families originally thought we were blowing Lydia's speech issues out of proportion because my father, brother and DH all had speech delays and it was just to be expected. No one had anything as severe as apraxia, but we definitely had the family history working against us.

lujain

My daughter is 25 months.  She hasn't been officially diagnosed with apraxia yet.  Her SLP thinks that she has mild or moderate apraxia and will probably diagnose her down the line.

We see a regular pediatrician for typical problems.  Last year DD was evaluated by a developmental pediatrician for autism.  (She was not diagnosed with autism.)  DD is under the care of a neurologist for her hypotonia.  Next month we meet a geneticist to try to determine if there is a genetic cause for her developmental delays.

I expect that DD will be able to speak normally, although it might take a lot of work (therapy) to get her there.

I am a SAHM, and DD has never been in daycare. 

This website has a lot of info:

https://www.apraxia-kids.org/

The Late Talker by Dr. Agin was helpful.  The book is available on Amazon, or you might be able to get it at the library:

https://www.amazon.com/Late-Talker-What-Child-Talking/dp/0312309244/ref=sr_1_1?ie=UTF8&qid=1316727743&sr=8-1

Also, there are message boards on www.babycenter.com on apraxia and speech delays.

nictel

I've been following your speech posts on Toddler 24+ (was my other home board) since my son also has a speech problem.  He was diagnosed with apraxia a little before 2 and 1/2.  I have to run and pick my son up at preschool, but I definitely want to share my story with you, so I'll post later today.  Thinking of you and hope I can give good advice and share some positives with you!