Dysarthia instead?

[Guest guest]

We finally got to see the SLP for my son's speech eval. (He's six, in a public

school K-2 self-contained classroom, non-verbal, minimal services, they tested

him and said severely mentally retarded--so not my kid!). We know there are

some neurological issues, Ronan has a mito disease that presents with features

of autism. It's been so frustrating to know there are speech and other issue

because we can't find adequate therapy in the school setting while trying to

afford the private therapy cost and time demands.

So, in reading The Late Talker, fabulous read, I was for sure for sure Ronan had

apraxia--the low tone, the drooling, the feeding problems, the neuro problems,

has said some words, can make some sounds, but jumbled. He's hit all the soft

signs BUT with his lack of speech, the SLP said it's so hard to diagnose that

and...it is probably more a dysarthia diagnosis. I have never had anyone mention

that dx in the last four years. Ronan's mito doc was the one that said it was

probably apraxia so we pursued it privately after asking for years for the

school dept. to please do some kind of apraxia eval.

I've already asked for an IEE for the cognitive and achievement testing to be

redone out of district by a trained professional who has knowledge AND

experience in testing children like Ronan. That's in the process right now. I'm

frustrated that the private SLP therapy may not be the right therapy. Also, in

the Late Talker, it mentions the ESY--can someone tell me if I'm living in the

Twilight Zone since our school dept. said that of course Ronan qualifies, but he

would go for 1/2 days four days a week and receive no related services. I

thought the whole reason ESY was available was so that the kids receive what

their IEP states which includes related services.

I'm sorry if I'm dumping on the group. It's been a long week of trying to be

hopeful but feeling so tired and getting the run around. The highlight of my

long day was getting to read two more chapters of the book--it's been a good

resource so far Oh, I also got our ProEFAs in the mail today and will start

first thing tomorrow!

Thanks,

[Guest guest]

Hi ,

I really don't know enough from what you said so perhaps you can give us some

more information to help. A child can have both dysarthria which is muscle

weakness together with apraxia which is motor planning.

The key sign of apraxia is the inability to perform task on command. This means

a child may be able to do something once and not again -or inconsistency is

another great word for apraxia.

Children with apraxia may or may not have low tone, drool, or have feeding

issues. We used those examples in the book because they are not unusual -but

for example my son Tanner who was diagnosed with both dysarthria and oral and

verbal apraxia never drooled.

If it's just dysarthria you would pursue a strengthening type of speech therapy,

and it clearly sounds like your child would greatly benefit from oral motor

therapy.

Dysarthria has consistent errors.

Are your child's speech errors consistent or inconsistent?

Does he break down with longer words or sentences?

Did he ever say something once and never again?

Can he say a certain sound in isolation but not when put with other sounds?

Can you provide examples?

Here's a page on oral motor dysfunction

http://www.cherab.org/information/speechlanguage/oralapraxia.html

It appears to me if your private SLP is not assisting you in advocating to the

school, nor has input into the change in diagnosis the school SLP feels your son

has -it's time to move on and find another private SLP! Also what about a

neuromedical exam from either a pediatric neurologist or developmental

pediatrician? If your son has hypotonia and sensory issues he could be entitled

to occupational therapy services as well.

As far as extended school year -please don't be upset by what the school 'said'

to you verbally. When they say something you don't agree with or that upsets

you -ask them to please put it in writing and explain why. In order for your

son to be qualified to receive ESY therapy services you probably could benefit

from written documentation stating that your son will regress without the

services. Just know it's a game and learn the rules and it won't upset you so

much. My son received the exact same services in his ESY program as he did

during the year when he was in preschool. We moved when he was in kindergarten

and he continued to receive ESY therapy services (just speech however) in

kindergarten.

About your son's cognitive or receptive testing -please make sure that's done

private as well (in my opinion NOT paid for by the school but through insurance

or out of pocket) by someone that is knowledgeable about how to test an

individual with a verbal disability. Someone that works with the hearing

impaired population is always a good start!

Here's a great archive on this as now posted on the http://www.apraxia.org FB

page

http://www.facebook.com/profile.php?id=1131155429 & ref=name#/topic.php?uid=115029\

735601 & topic=9064

If you can't read it let me know and I'll repost here.

In general however it sounds to me like you just need a bit of help with

advocacy...and to find a hero on the outside of the school to help. That would

be either or both an SLP, neuroMD.

=====

[Guest guest]

My daughter was in Extended School Year last year for a speech delay, my son is

going this year for apraxia. I don't know if all districts work the same, but

mine feels that ESY is more for retaining what's already been learned than for

for teaching new ideas. My school's ESY had multiple classes, and my children

were (will be) put in the speech class.

In both cases, my children were offered speech services, but not to the same

extent that they had in the regular year. My son currently receives speech 3x

per week (2x individual, 1x group). In the summer, I know it's only going to be

2x a week (don't remember if it's group or ind, I'd have to check the IEP).

> >

> >

> > I've already asked for an IEE for the cognitive and achievement testing to

be redone out of district by a trained professional who has knowledge AND

experience in testing children like Ronan. That's in the process right now. I'm

frustrated that the private SLP therapy may not be the right therapy. Also, in

the Late Talker, it mentions the ESY--can someone tell me if I'm living in the

Twilight Zone since our school dept. said that of course Ronan qualifies, but he

would go for 1/2 days four days a week and receive no related services. I

thought the whole reason ESY was available was so that the kids receive what

their IEP states which includes related services.