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Re: Introduction and call for help

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My son is almost 5 and has apraxia. You are well within your rights

to insist the speech therapist in school has experience with children

with apraxia. If they don't have anyone in their school with

experience in treating apraxia, they have to get one. Have you seen

a DAN dr. yet? I just found out about them after I joined this

group. There is a ton of information in this group. I am pretty

new, so I am still learning too. Since I have started my son

on Omega-3 suppliments I have seen a good improvement in his attempts

to speak. His base sounds are still limited, but he is starting to

make more progress. Keep looking, I bet there is a lot of

information in this group, or the books reccommended, to help your

son. Good luck!

\Mother of 4.5 years old

>

> Hello everybody!

>

> My name is , and I am looking for ways of helping my 4.5 year

> old son Conor, who has Apraxia and Autism. Though we have

suspected

> he had Apraxia for a long time, it was only diagnosed in April

of '07-

> - then due to IEP red tape we have only been trying to address it

> through the educational system since October. We live in

> Massachusetts.

>

> It seems that Conor's Apraxia affects his speech production, his

> ability to use his mouth, and his fine motor skills. For instance,

> he can only produce a handful of sounds, m, a, with consistency,

> others very erratically. He does not know how to control his

tongue,

> lips, etc -- can't blow, hold breath, is just learning to stick his

> tongue out on command, and is generally unaware of what's going on

> above his neck. Fine motor-wise, he has limited ability to produce

> signs because he can't imitate very well, and cannot hold up one

> finger while holding down the rest unless he's physically holding

> them down. His ability to hold a crayon and imitate strokes is

also

> affected.

>

> I have been working on getting the school to address his Apraxia as

a

> primary disability along with the Autism since October. I already

> started taking him to private speech therapy twice a week over the

> summer (once is a co-treat with OT, the other is speech only) and

> they work on oral motor exercises such as sticking out his tongue

or

> smiling on command, as well as specific sound production. The

> private therapist he sees (paid by insurance) has experience

working

> with kids with Apraxia, but I can't say if she's highly

experienced.

> The therapist at Conor's school, however, has no experience working

> with Apraxia, and doesn't seem to be doing any research to better

> help him. She now consults with our private therapist for ideas on

> how to work with him, which is a start.

>

> At school Conor currently receives 4 x 15 minute sessions a week

1:1

> to focus on oral motor and sound production, but my confidence is

> low. The school therapist has said that progress is very halting

and

> Conor will be able to do something one day (or one attempt) and not

> the next. She also says he gets " stuck " on something, such as

> opening his mouth, and when she moves onto the next action he will

> continue opening his mouth. My husband works with Conor at home

most

> evenings, and he seems to have the best results of anyone when

> working with him. As a family we agree, however, that we are

seeing

> some progress, but it is slow slow slow. The other day was the

first

> time Conor has ever used " mom " (a word he is just now able to

> produce, but not consistently) to actually get my attention. Other

> times he will use sounds, but never word attempts.

>

> I am attending a team meeting on February 5th to ask for better

> services for Conor, as well as to get the Apraxia diagnosis added

to

> the primary diagnosis area of the IEP. I was planning to ask for

30

> minutes a day of 1:1 therapy to work on oral motor and other

Apraxia

> treatment (though I may concede to letting them delivery that 3x a

> week due to our two private sessions). I am asking for goals to

> specifically address and measure oral motor/speech production

tasks,

> but I don't know enough to tell them what exactly the goal(s)

should

> say. And I am asking for a consultation/observation between the

> school SLP and an expert in Apraxia in order to assess Conor's

needs

> and recommend therapy for him while he's at school. At this time I

> would accept that in lieu of demanding they provide another SLP to

> work with him, but this is where I need some advice.

>

> 1) What are your impressions of his current therapy scenario?

Should

> he be able to progress if he got the amount of therapy I'm asking

for?

>

> 2) Is it realistic for me to ask for the consultation/observation

> with an " Apraxia Expert " , especially given that I don't know of one?

>

> 3) Should I expect to have the Apraxia diagnosis front and center

> along with Autism on his IEP?

>

> 4) Is there anything I'm not asking for that I clearly should be?

>

> I am so concerned for my son, and I so desperately want to see him

> making progress. I think he would if he had the right mix of

therapy

> frequency and duration, but I know so little about this right now

> that I am open to hearing anything you think could make a

difference

> for him.

>

> Thank you all for reading this far, and for having a place for me

to

> come to ask these questions!

>

> Kind regards,

>

>

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I am always pushing for more services. He currently recieves 1 half

hour session 4 days a week one on one. He is also receiving half

hour of OT 1 day a week. The school system just purchased a

augmentative speech device(springboard) for . But he still does

not have the device. It is waiting to be programed. If you feel

your son is entitled to more services push them. If the school

psycologist, social worker, and teachers all agree with you, them he

is entitled to more services. If everyone is stonewalling you get a

lawyer. I am considering it. I have been getting OK services, but I

guess I am just never satisfied. I think deserves the best. I

see his frustration growing all the time. But we are seeing

progress. Slow, but still progress.

>

> Hi ,

>

> Thanks for your email, I'm so glad to be in a group where everyone

> knows the struggles and can relate to wanting to do everything for

our

> kids. I have already brought my son to a DAN doctor, and we've been

> working on balancing his system before doing anything major (like

> chelation). So far, I've removed gluten and casein from Conor's

diet

> (with a nice increase in attention and engagement) and started some

> supplements to decrease yeast and bacteria in his system, as well as

> EFA's. We will probably be trying MB12 shots soon, since it is

> supposed to have particular benefits for kids with apraxia. I

haven't

> noticed a lot of change with the EFA's (Omega 3 & 6) but maybe it's

> not the right mix/amount for him. I may try something like Pro EFA

or

> Efalex, which are supposedly formulated just for speech benefits.

> There hasn't been anything that has made a significant difference so

> far, but little gains do add up! Fortunately, Conor has interest in

> speech and does try to say things, it's just that most things come

out

> sounding the same ( " eh eh eh " ).

>

> Does your son have an IEP? Are you happy with his services? If so,

> do you mind me asking what he receives for frequency and duration of

> speech therapy? If the school can't service my son's speech needs

we

> may need to look into other options, but I'm first wondering how

hard

> we can push the school. I think there's a lot that they haven't

done

> yet, given that we get a total of one hour of 1:1 therapy right now!

>

> Well, I hope to talk more with you and others on this list, and to

be

> able to help one another in whatever way we can!

>

>

>

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