Apraxia of Speech / Verbal Dyspraxia.....what now?! !! !

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FD
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09 Nov 2009, 7:31 pm

Okay......one of my first ever threads was "Help, will he ever talk?", back in Feb this year. I got some wonderful advice and tips which we followed, and have had brilliant results.

But we have found out today that my son probably has verbal dyspraxia (needs formal assessment to diagnose). This is something I suspected for a while now. While his preschool were sure it was the ASD that was holding his language back (due to lack of motivation, developmental delay etc) I always felt if he could talk...he would.

So now we are finding out that he has a difficulty 'planning' speech. Whilie I am pleased in some ways, as I have met people along the way in my sons intervention team that think, no language = too autistic to even care, or want to care ?! !!

In my sons case I never belived this to be true, and am somewhat glad that I have a 'portion' of a reason.

Have any of you guys any experience with this with your little kiddies?

Your experience and knowledge is much appreciated as always xx



CRD
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09 Nov 2009, 9:03 pm

First let me get this out of the way WOOOOT! :D :D :D :D As far as what to do now I'm the wrong parent to answer this as Jake has never realy spoken over a few words here and there and when my older son started speaking after not for a year his trouble was with letter blends ect. Someone here is sure to have walked in those shoes and can help you better then I can.



ouinon
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10 Nov 2009, 5:24 am

My probably AS/PDD son, now 10 years old, had speech difficulties. He barely spoke until he was four, nearly five, and when he did he was unintelligible/incomprehensible to almost everyone. Even when he started to produce more well-formed sounds/words he still spoke in telegraphese, and we went to two different speech therapists, over a few months, who came up with nothing better than "We can't say what the problem is because he won't speak", :roll: this despite the fact that he had talked, volubly if in telegraphese, about dinosaurs, ( his special interest at the time ), with one of them on the one occasion that he was allowed/encouraged to talk about something other than their card systems, etc.

We gave up on professional help at this point, and decided to just trust that he would learn. And he has. His delivery is still rather unusual, heavy, and/or too accentuated, and not entirely idiomatic, but it is "fluent", and he has a huge vocabulary.

The biggest most dramatic improvement happened when he started reading, aged 7 and a half, ( I had "trusted" there too, putting no pressure on him, apart from the occasional anxious meltdown about it that is!! ! ;) ) , going from looking at pictures in comic books ( Tintin, Smurfs, and Asterix, etc ), to reading almost anything. He is now a very fast reader, and has swallowed Harry Potter, "The Lord of the Rings", "Kim" by Kipling, and the first half of "David Copperfield" among many other books.

As soon as he started reading it was as if he suddenly started getting the data he needed to structure and complete his speech.

His speech development pathway simply didn't "match" the standardised one they expect in schools etc. And, probably luckily, he didn't go to school. He has homeschooled almost all the time.

He is celiac, and has been gluten-free since about two years old. I am gluten-intolerant, ( I soon become severely depressed, anxious, overwhelmed, manic/alienated, etc, and experience poor sleep, fatigue/lethargy, brain-fog, etc when I eat gluten, and sugar ), and I have generally paid quite a bit of attention to our diet, though not always in the most well-informed way. I discovered recently that perhaps I could have done something about his speech delay with diet:

"Scientists Characterizes New Syndrome Of Allergy, Apraxia, Malabsorption":

http://www.sciencedaily.com/releases/20 ... 104002.htm
http://www.eurekalert.org/pub_releases/ ... 071309.php

Quote:
A landmark study conducted by Children's Hospital & Research Center Oakland is the first to reveal a new syndrome in children that presents with a combination of allergy, apraxia and malabsorption. Autism spectrum disorders were variably present. Verbal apraxia has until now been understood to be a neurologically based speech disorder, although hints of other neurological soft signs have been described.

The new study, led by Children's Hospital & Research Center Oakland scientist and pediatric emergency medicine physician, Claudia Morris, MD, and Marilyn C. Agin, MD, a neurodevelopmental pediatrician at Saint Vincent Medical Center in New York, however, suggests that the symptoms of verbal apraxia are, at least for a sub-group of children, part of a larger, multifactorial, neurologic syndrome involving food allergies/gluten-sensitivity and nutritional malabsorption.

...In the study, Dr. Morris collected information from nearly 200 families with children who suffered from verbal apraxia in order to better characterize the symptoms and metabolic anomalies of a subset of children. The data clearly demonstrated a common cluster of allergy, apraxia and malabsorption, along with low muscle tone, poor coordination and sensory integration abnormalities. In addition, Dr. Morris was able to gather laboratory analyses in 26 of the children, which revealed low carnitine levels, abnormal celiac panels, gluten sensitivity, and vitamin D deficiency among others. ...

...All children genetically screened carried an HLA gene associated with gluten sensitivity and celiac disease. "The sample size is still small and should be interpreted with caution," says Dr. Morris. "However this is of particular interest given the recent publication by Eaton and colleagues in the July 6 online edition of Pediatrics demonstrating a greater than 3-fold risk of autism in children born to mothers diagnosed with celiac disease. This brings some credibility to the anecdotal reports of gastrointestinal and behavioral improvements in children with autism spectrum disorders and/or verbal apraxia when eliminating gluten from their diets. Although the implications of these observations remain to be determined, this association and the utility of dietary modifications warrant further investigation, particularly if we can identify a genetically vulnerable group". ...

Most significantly, the data indicate that the neurologic dysfunction represented in the syndrome overlaps the symptoms of vitamin E deficiency. While low vitamin E bioavailability may occur due to a variety of different causes, neurological consequences are similar, regardless of the initiating trigger. The study suggests that vitamin E could be used as a safe nutritional intervention that may benefit some children. Growing evidence support the benefits of omega 3 fatty acid supplementation in a number of neurodevelopmental disorders. Anecdotally children with verbal apraxia will often demonstrate leaps in their speech production when taking high-quality fish oil. The addition of vitamin E to omega 3 fatty acid supplementation in this cohort of children induced benefits that exceeded those expected from just speech therapy alone, according to parental report. ...

She points out that it is equally important for children given an apraxia diagnosis to receive a more comprehensive metabolic evaluation than what is current practice. Many of the nutritional deficiencies like low carnitine, zinc and vitamin D are easily treated. By not addressing the nutritional deficiencies, the child will continue to suffer from significant medical consequences of those deficiencies. The first step is to identify and treat the deficiencies. The next step is to try to figure out why they have these deficiencies and a fat malabsorption syndrome in the first place.

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FD
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11 Nov 2009, 6:35 am

Thank you so much for all your information. My son had allergy testing done, and while overall his 'mood' is so much better without the offending foods, it never really made much difference to his language.(he takes his Omega also)

All the language that he uses every day (rote learned I guess) he is fine with. eg. lets go to the car / I cant find it anywhere etc. But his problem is when he is faced with creating a new sentence, to try and organise the right words, and then say them clearly. Is that verbal dyspraxia, or something all AS kids have difficulty with?

Ouinon - is your son in mainstream shcool? I am wondering if mainstream school will bring his language on, or create more pressure for him to speak, and have a negative effect? My son will be starting school in Sep 2010, still dont know if it will be mainstream or ASD class in mainstream school (the decision is so difficult)

Its good to hear that your son has come on now, that does give me lots of hope. The thing is, I keep moving the goalposts -

At first all I wanted to hear was Mommy
Then I would have been happy with just words
Of course I then wanted him to put the words together
And now his is speaking in sentences (mostly rote learned).....I still want more!! !!

He is only 4.5yrs and has gone from one word to sentences in just six months, so I hope that is a good indicator of his potential.

Thank you so much for your replies, I really apreciate it xx



ouinon
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11 Nov 2009, 6:43 am

FD wrote:
Ouinon - is your son in mainstream shcool? I am wondering if mainstream school will bring his language on, or create more pressure for him to speak, and have a negative effect? My son will be starting school in Sep 2010, still dont know if it will be mainstream or ASD class in mainstream school (the decision is so difficult)

My son is once again homeschooling, after trying school this year for three and a half weeks. He has almost always homeschooled. Autonomous learning style! :) ( "radical unschooling" as it is also apparently known ;) )

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