Let's talk dyslexia and PROFOUND speech

[BlsdMama]

Impairment, shall we?

 

Okay, Olivia, four in June, is most likely severely dyslexic. Her directionality issues mimic those of Tim EXACTLY. (He is diagnosed profound, not severe. We also have a mild and a moderate.)

 

Olivia could not say "mom"or "dad" before age three. She had no words. None. I'd say she has close to twenty now with an assortment of grunts.

 

Intellectually she is totally normal. I'm certain of this. She is CRAZY CAPABLE of making us understand in the most creative ways. I adore this kid.

 

She is easily embarrassed, especially about her speech. We have avoided therapy because we can't find anyone who can tell us they are knowledgeable about how dyslexia and language processing in the brain affects speech and if it can even BE useful to have therapy.

 

Talk to me.

 

I drove three hours last night (and three hours home) to hear a dyslexia lecture on what I thought was specifically going to address this issue of speech. It did not. She said kids like Olivia are considered "locked in" and very difficult cases. She was a solid speaker (I've heard Susan Barton speak twice and a couple other gals) and I enjoyed her but it was on dyslexia which I've heard all the same information multiple times. I spoke with her after the engagement and she recommended a speech path friend for an assessment. That alone may end up worth the drive. I'm willing to go. (Two hours) but I'd sure like to be a little knowledgeable do I can prep questions.

 

Anyone here deal with a child so language impaired with totally normal intelligence and dyslexia?

 

She mentioned Einstein syndrome. I'm not at all convinced that's what I'm seeing. Is say normal intelligence but not genius.

[historically accurate]

I'd look into Apraxia of Speech.  It often goes hand in hand with dyslexia.  If it is Apraxia, PROMPT therapy is the gold standard.  http://www.asha.org/public/speech/disorders/ChildhoodApraxia.htm

[wapiti]

I would definitely look at PROMPT, though I only know what I've read here (do a search of this board - look for OhElizabeth's posts).

 

If it makes you feel any better, two of my kids had *zero* words on their 3rd birthday.  One took off after that (it just so happens, the one who had ear tubes at 2).  The other one was in regular speech therapy at school until 9 y.o.  At 12, he's still embarrassed about his speech, which really surprised me.  He is not dyslexic, though the covd optometrist said that he's a dyslexic processor, i.e. *very* visual-spatial strengths.  Highly gifted in math.  He was not reading until the end of K, but then his reading level took off.  He still doesn't read a ton at home.  He has long had a slight language processing glitch involving difficulty with inferences and such, but both his reading and language usage percentile scores, on the MAP for example, are well into the 90s now.  He had a short, intensive round of private OT for sensory issues when he was 4.5.  At 3 y.o., the school psych said he was "severely developmentally delayed" (I distinctly recall choking back my own laughter, because that particular label didn't fit the boy I knew, who managed to make jokes without speaking ever since he was a baby; I guess that label had mostly to do with the speech and his utter lack of fine motor skills).

 

Make sure you dot all i's, cross all t's:  I would want a thorough audiology workup to rule out any hearing issues, if you haven't already done so.  The school district will likely do one.  Alternatively, to do one privately, an ENT's office typically has an audiologist on staff.

 

Now that I think about it, I'd want a full set of evals with the school district - if you have any faith at all in the quality, that would be the cheapest route to getting started - and then go from there.  They'll do an OT eval too, which you probably want with your concern about dyslexia.

[krismoose]

I'm an SLP - definitely look into apraxia of speech and use that term when inquiring with local SLPs about therapy. Unless they're in a specialized center, most SLPs that I know wouldn't work with someone for dyslexia, but rather the other speech and/or language issues that are present. :)

[Pen]

My ds received SLP help for speech long before I ever realized he had dyslexia. The SLP therapy was useful for speech.

 

So far as I know a lot of dyslexics have a history of having had speech trouble also. I've never heard that anything about dyslexia makes trying to remedy speech issues something to avoid.  What has made you think so?

[PeterPan]

BeckyJo beat me to it!   :D    

 

You definitely described a scenario that could be apraxia of speech.  My ds needed PROMPT to unlock his speech and LIPS to then dig in on the phonemic awareness.  He's still really crunchy, like so crunchy he tests as dyslexic with phonological processing even in level 3 of Barton.  I don't give a flip because he's sounding out words and learning to read.  I'm not trying to turn him into a linguist, kwim?  

 

So I'd view the speech and phonemic awareness as two separate questions and solve them separately.  I would NOT call random SLPs if you have apraxia.  Look on the PROMPT Institute website and use their provider locator.  Ours is an instructor and she KICKS BUTT.  I walked in with my kid, and in the VERY FIRST SESSION my kid spoke.  Now not all kids do that.  I'm just saying I had NO doubt I was getting the right therapy.  And with a 2 1/2 (now only 2!) hour drive each way, I had to be really confident it was worth it, kwim?  PROMPT is also brilliant for homeschoolers, because they can teach you to carry it over at home.

 

Now, about LIPS.  LIPS plus PROMPT is insanely powerful, insanely.  You have this direct portal into their brain with the motor planning, and then you're able to start connecting it to visual representations, tiles, and alphabetic.  Fabulous, fabulous tool.  But if you start doing it for sounds they aren't yet solid on, you're gonna have the SLP screaming.  I decided, because my boy was newly 6, to say screw it and stop the speech therapy entirely for a few months.  So we've done nothing but reading, which has made his speech go to pot.  Like we're going to have major problems to undo when we go back.  BUT he is reading environmental print and progressing and enjoying the process.  In his case he has enough problems, we can't do it all at once.  His BRAIN can't handle doing it all at once.  It totally wears them out to do so much.

 

So to me I would do speech therapy to get her expressive going.  You have serious issues there and it's going to affect her behavior and self-concept not to work on it.  Once you have that going, THEN tackle the phonological processing question.  But go like gangbusters on her speech, kwim?  And yes to PROMPT.  Amazing.  And omega3.

 

[merry gardens]

...Intellectually she is totally normal. I'm certain of this. She is CRAZY CAPABLE of making us understand in the most creative ways. I adore this kid.

 

She is easily embarrassed, especially about her speech....

 

 

I don't have much to contribute here except to add a few thoughts from my perspective as another mother with a large family who's had to deal with dyslexia and minor speech issues. It strikes me that if your daughter is easily embarrassed about her speech, she is very, very blessed to be surrounded by so many people who love her. She feels comfortable enough to communicate with the people she loves in all those creative ways. Plus after all those babies, I bet you're pretty good at your end of communication with her so that you recognize what she's trying to say with those creative attempts and grunts. You are able to see her as "intellectually normal" in spite of her speech difficulties--and if you couldn't see that, she'd have more problems beyond her speech. I hope you find the help you need. I sense that while the right therapists could help your daughter, YOU are ultimately the expert here who is going to help them help your daughter. 

[Tokyomarie]

I agree with others who have suggested to get a speech evaluation ASAP. We now know from brain neuroimaging and other studies that early intervention is the best and most appropriate thing to do. Children who don't get intervention during the preschool years fall further and further behind and often develop emotional and behavioral difficulties related to the lack of ability to communicate with others, particularly their peers.

 

My own son was first evaluated at 3yrs 4mos. I tried to get him in to someone before he turned 3yo; unfortunately, the waiting list was quite long. At the time, we lived overseas, so we didn't have early intervention services available. This child, now a young man, is also very intelligent, but he wasn't picking up speech naturally- even with standard recommendations for parents to follow for those children who need a nudge. With a highly qualified speech therapist, his speech developed and within a year he was in a good place and more competent in peer relationships.

 

My son has pretty severe dyslexia. We treated both:  the speech/sound disorder with speech therapy and the dyslexia with appropriate educational interventions.