Re: A novice mom looking for direction!

June 27, 2004

Welcome Liz!

I am going to take a stab at some of your questions but am interested to see

what others have to add also. Just so you know where I am coming from, I

have a 5 ? year old boy who was non-verbal until he was about 3 years, 5

months and now he is fully intelligible and talking up a storm! He is

starting mainstream kindergarten this fall.

As a parent starting this journey, I would highly recommend getting the book

" The Late Talker " . I regret that it was not yet published when I started

out. It is a " how to " manual for helping your child reach his potential.

Here is a short blurb about the book:

START QUOTE

<<Every parent eagerly awaits the day his or her child will speak for the

fist time. For millions of mothers and fathers, however, anticipation turns

to anxiety when those initial, all-important words are a long time coming.

Many worried parents are reassured that their child is " just a late talker, "

but unfortunately, that is not always the case. Co-author

June 27, 2004

Hi and welcome to the list! You will find some great info

here.

Scroll down below and I'll do my best to answer as a parent of a now

6 year old boy who was also a quiet baby, grunted and at 3 I was told

get him into a program or he may not speak for kindergarten. The good

news is I can barely keep him quiet and he has just finished off a

great kindergarten year and is academically doing fantastic. He is

speaking and we are still working on the rhythm and articulation in

connected speech. So yes it does get better and the emotional roller

coaster you refer to has its ups and downs but nothing is sweeter

than when you hear that " Mommy " word which many take for granted.

denise

Mom to 6 with verbal apraxia and low tone

> Dear all,

>

> I am new to the " world of apraxia " and have already found reading

all of

> your comments and questions really informative. At the risk of

being

> repetitive (I know most of you probable have already been through

these

> issues) I am hoping for some feedback regarding my son (age

2 & 4

> months).

> has been " unofficially " diagnosised with apraxia by his SLP.

> was a silent baby and until recently, a silent toddler

(except

> for the occasional " grunt " ), He has just very recently begun to

make

> intentional sounds (ba, ma, ga and da). He tends to use the

sound " ba "

> for most things (althougth those " things " that he uses the

label " ba "

> for tend to be pretty appropriate (e.g. bottle, bus, ball, baby,

bug)).

> He also seems pretty consistent with the sound he applies to

objects.

> We are encouraged by his progress over the last month and I am

becoming

> a bit of an expert at listening to (and interpreting) his sounds;

as far

> as I'm concerned he really is now communicating with his sounds.

>

> Now for my list of questions..

> - Does anyone have any comment as to whether indeed

> demonstrates signs of apraxia?

** SOunds like it is possible but an SLP or a dev. ped/neurologist

familiar with the characteristics could make a diagnosis.

> - Are there any other potential reasons for the speech

> problems?

**We could all pull our hair out wondering why, but the important

thing is to get him the help he needs. Some say there is a genetic

link.

>- He is currently receiving speech therapy 1 X week from a

> speech therapist assistant . do you think this is enough for a 2 1/3

> year old?

** I would try and seek more with someone experienced in apraxia. At

that age they don't know any different from 1X a week to 3X a week.

With the right therapist it is fun. The consistency and more frequent

the therapy the better.

>Speech therapy is primarily focused on play (with the goal

> being to encourage spontaneous vocalizations).does this sound

> appropriate? . or should there be more oral-motor techniques being

used?

Oral motor can be incorporated into therapy if necassary. Can he blow

bubbles, drink from a straw, etc?

Should I hold-off on giving Pro-EFAs until the dev.

Peadiatrican/Neurologist give a definite diagnosis?

** You don't necassarily have to hold off b/c the EFAs are good for

him anyway but I myself waitd for the go ahead from the Dr. before

beginning them.

What are the factors that can forecast prognosis?

There are so many variables. The child's receptiveness to therapy can

depend on his personality. My son works really hard and does not

frustrate easy. He has an easy going personality which has made

therapy fun. He asked his private SLP today if it was his last visit

I think he thought since school ended so would speech) The SLP told

him she would miss him too much and I told him he would just have

speech and not school speech and he said OK and accepted that. So it

really depends on the kid and if other issues are present.

>

> I'm sorry for my long-winded letter.I am feeling a bit desperate to

do

> whatever I can to help. As a mother, do you ever get off of this

> emotional rollercoaster? Is there ever a point where you are

at " peace "

> with the diagnosis and just " get on with life " ? I wish we all had a

> crystal ball for the future.

Yes you do get to a peace point and I do say get on with life. Do

what you would do with a typical child and don't use it as an excuse

to hold him back from other activities. Find others in the same boat

for play dates, etc as well as other tolerant parents of typical kids.

Good luck and hang in there! It gets better.

denise

>

> I know everyone is really busy with their own lives.but, I would be

> really appreciate some (any!!!) feedback.

>

> Thank you,

>

> Liz

>

June 27, 2004

My son's problems are quite different (he has a genetic condition

called Sotos syndrome and is also autistic, having lost all speech at

age 26 mths - we're still waiting for him to say his first word).

What I want to encourage you to continue doing (as I see you are

already doing) is to DO YOUR HOMEWORK. In other words, don't wait for

the professionals to inform you and tell you each step to take. So

much of the therapies and methods are hit and miss for our kids. They

(the professionals) don't have all the answers - nobody does. Thus

it's up to US, the parents, to be the experts on our kids. I am

saying this from good experience and bad experience. While our son

was little I depended too much on the professionals. As I gained

experience with many therapies and learned how to get into the

internet, the tables were turned! Many moms are not so slow as I was

in getting informed. You seem to be well on your way to being the

informed and educated mom for your sweet child!

(ny 6 1/2)

June 29, 2004

This is SO VERY TRUE. I remember telling our ped that something just " wasn't

right " from when Jordan was around 9 mos. He, to others, presented like any

other kid, was the first in his " baby gym " to wave, walk and do the obstacle

course. To an outsider, he was far beyond other children. It wasn't til he was

3 and had very little language that he recommended I have him " checked for

autism, even though I don't believe he has it. " I mentioned apraxia and he had

no idea what that was.

At our last check up (5 year birthday) this doc was amazed. There are 3 other

docs in the practice, so fate be as it was, he had not seen Jordan since that

last conversation. Jordan was cooperative, telling him how he wants to be an

animal doctor, and take care of lions. He told him that the Zoo came to his

birthday party, and brought an owl, and he could finally blow out his birthday

candles! He followed all of his directions and past every test except the

" auditory processing " test with flying colors. This doctor's exact words to me

were " I have no idea what you did, or how you did it, but if you asked me two

years ago, there's no way I'd thought I'd ever look at this child, and write

" age approriate development " on his chart. " He could not believe his progress,

and had me give him a run down of how I " figured out " what to do. I had no help

from outside professionals, and I am totally frustrated by the lack of caring

help made available to parents. I had to research myself what to do, and how to

treat the symptoms he has. I sought the right professionals myself. Had I

relied on that doctor or his staff, OR the developmental doctor, I have no doubt

that Jordan would still be struggling today. Or worse.

A first time parent with a child who has a situation, whether it be speech and

language, or other issues that don't present with a strong medical issue, is

unfortunately left out there to navigate the system alone. And in this state,

you're going to get bamboozled into thinking that your child is completely

normal, and only needs " minor intervention. " They push children into the school

system that are nowhere near ready, and don't provide services that are so very

much needed, because of lack of staffing, or just because " they don't have to. "

I've been very soured by the EI system, and will be fighting them for back

services that they denied Jordan for the past 2 years.

My advice to any parent on this list or any other, is to get services that YOU

control. Get people who report TO YOU with your child's progress and give you

ACCURATE information on how they are progressing. Make sure they have a plan,

and stick to it. And involve YOU in what they are doing, so you can follow

through at home. Work with people you like, your child is happy to see, and

your child makes progress with. Don't allow the " system " to provide you with

services or therapists because " that's who is available. " If you don't see

progress with in a designated amount of time, make a change. And do it quickly.

Sorry to ramble, but I realize much of what caused Jordan NOT to progress was an

unbelievablly incompetent SLP through EI, and the fact that the EI service

coordinators just don't care. They want a service plan for your child that fits

into THEIR needs, not the child's. It was not until we removed him from THEM,

and required them to pay for the private therapy he was receiving, that he moved

forward. Two very wasted years with people who, in my opinion, should not have

their hands on children. YEP, my pocketbook is a good deal lighter, because we

were paying for 5 days a week therapy for the past 4 months, but every time I

hear him say " good morning Mom, where are we going today? " I couldn't care if I

was penniless. Hearing that voice makes me the richest mom on this planet

:-)

~karyn

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