Any thought would be appreciated

February 7, 2011

Hi

I was hoping someone whose been through this can offer me some

advice. We've had my 2.5 year old assesed by 4 different people now

and have 4 different opinions. He wasn't talking at 2 so we took him

to Stanford and of course he had a meltdown so she assesed him as

low. Then after waiting a few months for speech we gave up and

started with another slp. She says he has severe apraxia (she has

since softened her opinion). The neurologist thinks he has a mild

speech delay. Today we took him for an early start eval and they

think he has expressive and receptive delays (the receptive is new).

Now, I don't know what to think. My opinion has always been that he's

somewhere in the middle. I'm concerned that he's not getting the

right therapy now. The slp has been treating him for Apraxia and has

been pushing us to have an ot. Eval as well. Everyone else says don't

bother.

We are seeing a lot of positive results with the gluten free diet, NV

and fish oil combo so I feel we are going in the right direction.

Any thought would be appreciated.

Thanks

Sent from my iPhone

February 7, 2011

Hi ,

Calm down- and don't buy into any evaluation just yet. First of all you really

only got one -severe apraxia. The " diagnosis " of " low " means what -delay?

impairment? And the cashier at the supermarket could have saved you the trips

for that one -or the " evaluations " of speech delay or expressive

delay....totally obvious but not a diagnosis. You want to know 'why' he's not

talking -you already knew he had a delay before you brought him there. Is it

due to motor planning, weakness, what? Are there any signs outside of just his

speech?

So apraxia is a possibility -but it's difficult to know for sure with a child

under 3 if it's apraxia unless there is oral apraxia as well. Not all with

verbal have oral. Also if there is a speech delay together with " soft signs "

such as hypotonia or low tone, motor planning deficits in the body, sensory

issues -that probably points to apraxia.

The one " diagnosis " I would refuse to have on my child's record unless they

could prove it would be the receptive delay. Please don't let them shove your

child into that box just yet without seeking an evaluation with professionals

who have knowledge in multifaceted communication impairments and outside of just

autism. Some of them once they rule out hearing impairment and autism figure

-oh he'll be fine. Well 75% of late talkers are just that -children with

developmental delays in speech...so they can get away with that much of the

time. But if your child is severe apraxic -you want to know. And you want to

provide your child with the benefit of the doubt when it comes to receptive and

cognitive ability at this point.

Your child may be dealing with issues beyond others of his age, and he is going

to need you to learn (in your free time in between laundry and all) how to

advocate for him -be his voice. Stand up for him and say " How do you know my

son has a receptive delay?! " " I want to know what testing you used to determine

that " I have found that those professionals that either are knowledgeable about

working with apraxic children, and when that's not possible, those professionals

that are knowledgeable about working with the deaf or hearing impaired

population to be better at evaluating apraxic children than most as they don't

have preconceived negative views on expressive impairments. Just because a

child can't talk doesn't mean they don't think -have feeling -can't listen and

understand others talking about them like they aren't in the room.

It's wise to provide some sort of alternative communication- even simple sign or

simple picture exchange (think of a menu at a restaurant..if you were in another

country and couldn't say " pizza " you would know how to point to that photo of

pizza....but don't take my word for that because when I was in Paris I only

wanted a slice and got a whole pie- but you get the point)

Have you read The Late Talker? If not that is highly recommended. I plan on

putting together a new support page as there are some awesome parents that want

to start supports groups and I want to get info up on how to get that started.

Just remember -your child is still preschool and even if he was school age there

is so much hope for all children with communication impairments- we read about

" miracles " every single day. The most important things for speech delay is

appropriate evaluation to secure appropriate therapy and if needed for preschool

(in 6 months) placement with an IEP. After that you may want to look as well

into nutritional methods we find that help which would be the essential fatty

acids from fish oils

http://pursuitofresearch.org/products/nutriiveda/nutriiveda-testimonials/ and

essential amino acids and nutrients from NV

http://pursuitofresearch.org/2010/12/01/therapeutic-use-of-fish-oil-for-apraxia-\

autism-and-other-communication-impairments/

Let us know what state or country you are in so perhaps others in your area can

help!

=====

February 8, 2011

I would absolutely get an OT evaluation. It can't hurt. My son, who is 5 and

has apraxia, still struggles with fine motor skills. No sensory problems but

it's taken a lot of repetition to get him holding a pencil/crayon correctly. I

would have taken him for an OT eval earlier if I suspected any issues. Good

luck

Sent on the Sprint® Now Network from my BlackBerry®

[ ] Any thought would be appreciated