Feeling overwhelmed, need some direction

[Guest guest]

Hi everyone,

My son is almost 29 months old, and is currently in ST through early

intervention. In late December they evaluated him and found him to have a 25%

delay, with the speech level of a 14 month old. His ST started in mid January,

and he sees her every other week for an hour.

Though I think his ST is wonderful, his speech has had very little improvement.

He has a few words that he says spontaneously (mine, more, mama, dada). They

are fairly clear, but not super clear if that makes sense. He makes a few

animal sounds, ah ah for monkey, ahhh for cat, arr for dinosaur/lion. Usually

he only says his words when prompted, other than more (he loves to eat He

has other " words " that I'm slowly figuring out. Bayboh is apple. Dee is for

his brother Cody. Dat is Cat. The " ba " and " bo " sounds seem to be for a

variety of words. Ladder is laller. He has other words that we will hear, then

not hear again for weeks or months. He sometimes says his version of " what's

that " and " I did it " . When he makes the sound oink or honk, it's very nasal.

When I ask him to say words, sometimes he does. Most of the time he shakes his

head no and shrieks. He shrieks a lot. Lots of constant MMMMMM sounds and high

pitched shrieking. Sometimes he mouths words like he wants to say them, but no

sounds come out (I noticed this when counting with him, he'll mouth one, two,

etc...but no sound).

His congnitive skills are where they should be. He has a 25% fine motor delay,

of which he receives OT an hour every other month (not sure what good that will

do). He also had tubes put in his ears almost a month ago, and he goes back in

2 weeks for a follow up hearing test.

I asked his ST about apraxia. She said she doesn't see any " clear " signs of it.

Said she sees some signs, but that they can also just be signs of a late talker.

Said it's hard to diagnose at this age, and she's requesting EI to give us 30

mins once a week, instead of an hour every other. I have been reading the Late

Talker book, and I feel like he has several symptoms of apraxia.

I don't know where to go though. I asked his ST about a developmental

pediatrician, and she said it wouldn't hurt, but that she couldn't recommend

anyone (she's only heard about the not so great doctors).

We are going to be starting the transition into the school system soon, as he

turns 3 in the fall. I know there will be an IEP meeting, and it's overwhelming

me. I want to make sure I do everything that I need to do, but I'm feeling lost.

Do I get him in to see a developmental pedi asap? I really need some help with

what I should do for him.

Thanks,

Melinda

[Guest guest]

Hi Melinda and welcome! Please allow yourself to cry when alone and take time

for yourself -it's perfectly normal to feel stressed at times as your worrying

about your child -your baby's future. Please know that while we have a

overwhelming success rate here of our children being verbal and mainstreamed in

school (and life) that it's difficult to believe that and I know that when faced

with slow progress and a diagnosis that has so little research and awareness.

But we are here for you -and we can get through this together!

I have an archive below because again what you feel is very normal. I don't

want to go into what to do for your son because it already sounds like you have

a wonderful SLP. It is difficult at times to diagnose for certain verbal

apraxia prior to the age of 3. This is why the developmental pediatrician or

pediatric neurologist appointment is also good to confirm or rule out soft

signs. I don't want to go into all of that right this second as you are already

overwhelmed and you can only take so much info at once. So right now just

wanted to share about how to deal with feeling overwhelmed.

~~~~~~~~~~~Archives

Here's an archive that I hope held up over the test of time as it's

probably got some dated information -but just to let you know -if you

put the word " overwhelmed " into the search you would be overwhelmed

with how many times this comes up!

From: " kiddietalk " <kiddietalk@...>

Date: Sat Nov 13, 2004 11:09 pm

Subject: Re: discipline, undermining my parenting

If you read any of the Chicken Soup for the Soul books you will find

that there are many who went through years of horrible abuse as

children through adulthood, who continued the same abuse cycle -

until they learned to stop the cycle, like Oprah. -you

can stop the cycle and rise above -we believe in you just as we do

all in this group. You don't have to do it alone -please do seek

help -it is out there waiting for you.

Since you are on medication -why not speak to your doctor to see

what he suggests? Here is a place you can call right now no matter

what time/day it is when you read this:

" Call With any Problem, Anytime

1-800-448-3000 (TDD 1-800-448-1833)

Open 24 hours a day, everyday

The Girls and Boys Town National Hotline is a 24-hour crisis,

resource and referral line. Accredited by the American Association

of Suicidology, our Hotline is staffed by trained counselors who can

respond to your questions every day of the week, 365 days a year.

Over the past decade, more than 5 million callers have found help at

the end of the line.

http://www.girlsandboystown.org/hotline/index.asp

Perhaps this article is one you relate to, hope not:

http://www.vachss.com/av_dispatches/disp_9408_a.html

Hope some of the links on this and the last email help -at least some.

=====

[Guest guest]

Melinda,

Your son sounds very similar to mine- he is 27 months and was evaluated in late

November by early intervention to be be at a 12 month speech level. My son was

diagnosed with apraxia at the beginning of February. For us, the 2 things that

have been the most helpful for him have been fish oils and the Kaufman Speech

Praxis kit. My son only said " uh oh " until he started taking fish oils, and he

can now say about fifteen or twenty words and a lot of sounds and

approximations. He wasn't making much progress in therapy until his ST ordered

the Kaufman kit. He doesn't talk much for her, so my husband and I do the cards

with him at home. My son loves them, and it is so helpful to have something

concrete to work on. He has never tried to say words that he can't, but with the

Kaufman method, he will try the approximations. I feel so much more in control

now because I have something I can help him work on (before we were just

modeling words all day long and hoping he would try to say them- usually he

wouldn't). If your son will say words when prompted and loves to eat, I would

try the Kaufman cards. My son earns gummy bears when he tries the cards. You

might ask his ST about them. My son's ST hadn't heard of them, but once she

asked around, she heard great things about the program. She ordered the kit, so

we didn't have to buy it.

I don't know if that helps. For us, it wasn't so much about the diagnosis as

just finding some way to help him produce more language. So far, the EFA, EPA

and Kaufman cards have been wonderful. We have also tried Nutriiveda and plan to

get some bloodwork done to see if we can find any deficiencies.

Casey

[Guest guest]

Speaking of proper assessment...Do you, , or anyone know (we'll drive/fly,

etc. although we'd prefer to see someone in Atlanta if possible) of a good,

trusted, neurological pediatrician (or something like that- not even sure of

proper titles) who could test our child? I know they're going to ask him to have

the psych. ed. eval. next fall (whether he's at speech school or in public), but

it sounds like that's not the most appropriate for kids with apraxia. At this

point, I don't care about cost/travel (over it!), and if he has a LD, I'm okay

with that- that's not the point. I just want accuracy above everything else.

My concern is that on top of apraxia, we have a child who is generally shy and

reserved (his parents' genes). It takes him a few weeks to get comfortable in a

school, so I worry A LOT about these tests in general if it takes him so long to

get comfortable.

Is there any great person out there who other trust- who would be the best to

test my child for whatever test is best- be it the psych. ed. or something else?

Thank you for any info. -marie

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