New to apraxia

[Guest guest]

My son is alomost 2 years old, is the youngest of 3 and only has 2

words in his vocabulary. We have a wonderful pediatrican and she

recomended that we get him evaluated with a speech therapist; which we

have done. He in now getting therapy once a week and she has mentioned

that he has a lot of the signs of apraxia, but she can now diagnois

him. We have been through a lot with this little guy. He was born

with pnuemonia and has had respritory problems since. I am feeling

very frustrated with the fact that I don't know where to go from here.

We have been told the only way to get a correct diagnosis is to go to

the Childrens Hospital and run several tests. Even at that there is

not a guaranty that they can diagnois him. Like I said we have started

speech therapy and I have tried sign since he was 8 months old. Nothing

has worked. We are also dealing with behavior problems and looking into

a behavior specialist to evaluate him. I could go on and on about how

frustrating this is for my son and our family. If anyone has any

advise as to what worked for your family, it would be greatly

appreciated.

[Guest guest]

Grace,

Please insist that your child have the 1x1 ST. Apraxics need to have

individual oral/motor therapy at least 2x per week. If you have not already,

please read The Late Talker Book.

Thanks,

Colleen

[Guest guest]

thank you Colleen, my son is suspected to have

apraxia, so should I insisted to have 1X1 ST now? he

is just two years old, I want to do as much as

possible to help him be normal before he enters

preschool.

thanks.

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

First let me say I'm sure the advice you'll receive from me will

conflict with much of the other suggestions you'll receive. I am a

father with a 11 year old son who was diagnosed at age 3. The good

news is that there is hope...the not so good news is there is no magic

cure.

It is going to take hard work, fighting with doctors, fighting with

insurance Companies, fighting with teachers, and I could go on. I

guess what I'm saying is don't let ANYONE tell you what is best for

your child! Stand up for what you believe is right as you will know

what is working and what is not. I have seen some extremely severe

suggestions on this site and also many, many helpful ones. So take

each one for what it is and make your own decisions. I have done

extensive research on the disorder that is Dyspraxia, DCD, GDCD, and

Verbal Dyspraxia.

According to the New Zealand Dyspraxia Organization " Developmental

Dyspraxia has been recognized by doctors and therapists since very

early this century, when it was first described it as 'congenital

maladroitness'. In 1937 Dr Orton declared it to be 'one of the

six most common developmental disorders', showing distinctive

impairment of praxis'

The most important thing I can pass on to you now is that according to

my readings " Verbal Dyspraxia " can be diagnosed by age 12 months via

specific mouth stimulation and observation of this stimuli. I do not

have the specific document handy to reference to you but it was a real

scientific study.

Assuming your child has Verbal Dyspraxia and is receiving speech

therapy (once per week may not be enough). The next step should be to

attempt to determine if your child could also suffer from Global

Developmental Cordination Disorder. To accomplish this I suggest a

evaluation with a trained occupational therapist that is familiar with

dyspraxia in specific. Once this is determined it may become needed to

include occupational therapy in your child's routine.

Finally and most controversial is the matter of medication and diet.

Those I have seen reply over the past 5+ years of monitoring this site

are strongly against medication and feel diet is the only way.

I disagree...my son took Concerta for 3 years and would not have made

it through 1st - 3rd grades without it. I'm not saying all the stuff

about diets is not helpful but I am speaking from my personal

experience. It is difficult enough to get my son to eat anything new

and submitting him to the torture of a strict diet at the time was not

an option. Since he has begun to show great strides in school and home

we have recently decided to remove him from the medicine and focus

mainly on the diet and mental aspects. This also came in conjunction

with us having a discussion with him about his Dyspraxia and reading

the book " Caged in Chaos " together (I highly suggest this book). We

have placed part of the responsibility on him to overcome his

challenges with his mind as he confronts them. He accepts this

challenge with much zeal.

So I'm now putting my shields on as I expect a less than friendly

response to my post from some others on this group. To them I

say...fire away.

Peace and Good Luck!

[Guest guest]

I'm not sure why anyone would flame you or attack what has worked for YOUR

son.

If they have in the past-- I'm sorry to hear that.

While I may disagree with you on the meds issue, that doesn't mean that it

doesn't work for some kids.

I haven't gone down the route of fish oils or dietary issues just yet-- it's

a bit too overwhelming for me at this point, so we're attacking where we see

we need to FIRST, and then, if need be, will go down that route later.

So my voice is one that stands in the " middle " .

Do I think that all of the dietary stuff would effect our kids? ABSOLUTELY--

only because they are human, like the rest of us, and we are all WHOLE

BODIES and have to look at thins holistically. Does that mean that people will

always see a result through change of diet and the effects/symptoms of

Dyspraxia?

Nope-- I don't think so, it's not always the case.

So a person just needs to take the suggestions offered here and see what

will work best (and it's usually a combination of things) and take it from

there.

Becky

Non-text portions of this message have been removed]

[Guest guest]

I very much agree with this, although my son has not reached this age yet--

but it makes complete logical and medical sense.

It's tough, because sometimes you need that short term fix, and yet-- you're

VERY right, that it masks things overall, and isn't a great LONG-term fix.

Just goes to say how difficult these kids will have it-- they have so much

time and efforts to put into HARD WORK

becky

[Guest guest]

Quite frankly.... unless others have gone through grades 1 to 3 with a severely

dyspraxic child in tow.... they simply do not understand the pain of these years

and how sometimes medication is the only way to get through them with as little

pain as possible.

We all make our own way with this thing.... doing what we know at the time. I

have thought many times to medicate and my son has resisted and so have not. I

have heard that Focacin is extremely beneficial for dyspraxic kids who are

really struggling with the early elementary grades.

BUT.... as a long term option, the medication does not get to the real source of

the problem; it only masks it.

The real problem is that you do not really realize how truly behind your child

is until you get to the first or second grade and then.... WOW.... everything

becomes topsy-turvy and it is really to late to affect any type of quick

changes.

With global dyspraxia.... nothing is quick!

But we learned the hard way that you cannot expect to send your child to therapy

once or twice a week and have them 'fix' your child. Once or twice a week

therapy does very little.

When we started doing daily therapy at home (we were dumb enough to wait until

my son was 11), his life made rapid changes. Everything turned around very

quickly once we got into the mode of thought that therapy has to be a daily part

of our lives. When you learn to embrace this issue, when you learn to attack

and become a mother or father that is beyond you ever expected.... then the

dyspraxia gets your full attention and it begins to recede.

This condition requires our full attention and it requires that you focus your

energies on helping your child over come it and grow personally all day long,

every day of the week until this is just simply how your household runs. When

you do so much therapy that you don't notice it anymore..... that is when the

dyspraxia will get conquered!

Or at least this is what it seems like!

Sometimes I feel that we were chosen for this experience. While I hate

dyspraxia, the experience of helping my son overcome it has irrevocably changed

who I am.... for the better I think. Dyspraxia has required that I dig deep and

really LOVE INTENSELY. I don't think that I truly understood the meaning of

love until I got off of my butt and started to work daily and with passion in

helping my child. That is not to say I didn't love previously..... I did! But

now I love with a far less selfish heart. I do the 'hard' stuff.... and it is

all out of love.

This week, I just realized that my son is reacting to gluten as well as casien.

We have been CF for a couple of years now and we did a gluten elimination last

summer which I thought we had past. I did it again last week and we Failed

miserably. How to get a 13 year old to want to maintain a gluten free diet? I

don't know the answer to that one but I must.... above all... do it with love

and compassion for my son. I must make the hard things that he must endure.....

easy for him. It is the ultimate challenge.

My boy is almost free of dyspraxia in his life and it has been an interesting

road but we have all come out the other side. We are definitely a closer, more

compassionate and more loving family as a result. My son is so kind and such an

interesting person for this experience. I wish that he didn't have to go

through it....yes.... but we have made it. We did slay the dragon of

dyspraxia..... one piece at a time.

It is absolutely doable but you must decide to wage the war and never to admit

defeat. That is how you get through this if you have global dysraxia.

Janice

Mother of Mark, 13

[Guest guest]

I think your post was well said!  Alot of times those of us with

older kids forget how hard they(our kids) have to fight to get through their

day as well as how hard they work to be understood.  While most other

kids are out playing after school, our kids endure therapy first. I know my

son understands that we must do this and he accepts it with a grace that

awes me.

I'll argue and cajole with any " professional " to get services for my son.

It's just sad that we have to do that to begin with.

so, shields down, I'm hearing you!

Sandy

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Ask a question on any topic and get answers from real people. Go to

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[Guest guest]

Do you know of a site or some place one can go to to find an OT

specializing in Apraxia. We had a rough time finding the right ST.

Our OT was good and helpful from EI but if this progresses into

something more than it appears to be right now I'd like to be

prepared.

Thanks!

Liz

[Guest guest]

Please take a look at message #53124. I got those labs for both kids,

even the one with seemingly no issues. Got then for myself too. Found

out my daughter and I are cekliac. It is likely I was actively celiac

when pregnant with son and that was part of his issue, along with other

stuff, some genetic, some not. There is no one cause of apraxia but

treatment options are being studied. Dr. on this board is trying

to get something going right now and knows it the best, sadly from

having an affected child. Those tests are a good starting

point along with the 4 As book by Dr. Bock.

I am so sorry about your daughter. It is not supposed to be that way.

You are in my thoughts and prayers and if you need anything I am here

as is the rest of this board.

hth

Liz

[Guest guest]

Did your son experience any side effects with Concerta?

[Guest guest]

I appreciate all of the advice that has been given. I was at a very

frustrating point with this and I feel now that there is hope with hard

work and love. It is not easy seeing your child struggle at such a

young age. However, we as parents are given challenges and are only

given them if we are able to handle them. Thank you for all of the

support and suggestions.

>

> Did your son experience any side effects with Concerta?

>

[Guest guest]

Cody was 'officially' dx at age 3 by a developmental pediatrician

(Hackensack University Hospital..get on the waiting list now).

There is a great PROMPT therapist in Marlboro--Lynn's speech therapy (they

have a website).

omegas didn't help cody, but I know it's not right for every child.

Cody is 7 now & his speech is still 'unintelligible'.

Best of luck to you.

On Thu, Nov 6, 2008 at 11:45 PM, <koukla971@...> wrote:

> Hi, my name is AnnMarie and I live in Old Bridge, NJ. My 27 month old

> son

> Christian he has not been officially diagnosed with apraxia but from all my

>

> research and opinions of his speech therapists he probably is. He has been

> getting speech for about three months now and he has had a di therapist for

>

> about 8 months. He has very few words bye bye , mama, go, mostly

> approximations. I was giving him dha for a while but now I just switched to

> 369 junior.

> I give him 1/4 tsp a day as directed by Nordic naturals. My question is

> this the right fish oil, is it enough and about how long until you see an

> improvement? I was also wondering if your children were officially

> diagnosed

> with apraxia and if so at what age and by what type of doctor.

> Thank you for any suggestions, AnnMarie

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