Re: What do adults who had Childhood Apraxia look like?

October 3, 2007

hi there,i had two adult cousins,who i now consider to be in this range,as

they were older than me i never thought about it too much,but in later life

they did speak,and you could understand them both with patience,they led

limited lives,although the older brother led a very fufilled one,the younger

was very depressed into his adult life,and sadly didnt live to be very old

,maybe 30 0r there abouts.i cannot follow up on their childhood now as all

contacts have moved on.

>From: " Allyssa " <allyssak26@...>

>Reply-

>

>Subject: [ ] What do adults who had Childhood Apraxia

>look like?

>Date: Wed, 03 Oct 2007 19:10:24 -0000

>

>Hi,

>

>As I continue down the path researching everything under the sun, I

>keep coming to the same question. Everything I read talks

>about " childhood " apraxia and it seems this diagnosis is new within

>the last 10-15 years. So before it became well-known (relatively

>speaking), what did parents do? I mean did all children with apraxia

>30 years ago get some sort of therapy? Are there adults out there

>today that can't speak because they never got the help they needed

>back when they were a child?

>

>I know that adults can get apraxia following a stroke or other brain

>trauma but what about the adults that had apraxia from the get go?

>Who are they? Where are they? And what sort of lives do they lead?

>

>Still just trying to make this all make sense.

>

>I do love my boys because they are who they are BUT as their parent I

>really feel this urge to make available to them the tools that can

>best help them reach their potential. Talking with SLP's it still

>seems like there is so much unknown about what helps and in the end

>how much of success was dependent upon the therapy they received as

>little ones and how much was due to brain maturation. I know its a

>combination of both but I get the feeling the approach is kind of a

>shot in the dark versus a very calculated process knowing exactly

>what will help.

>

>Anyway, back to the question...adults...do any of you know of adults

>who had apraxia as a child?

>

>Thank you so much!!

>

_________________________________________________________________

Advertisement: Love Footy? Get AFL, NRL, Rugby live scores and video now!

http://ninemsn.com.au/share/redir/adTrack.asp?mode=click & clientID=819 & referral=h\

otmailtagline & URL=http://sports.ninemsn.com.au

October 4, 2007

There are other consisting of these exact people. We all

love our children for who they are and we all feel the need to do our

best for them, not because their accomplishments are attached to our

egos but because it is a cold, hard world out there and any chance we

have to prevent obstacles from getting in our kids way is a chance

worth taking. In my research I found video of some dyspraxic

children. One video was of a bright young man who after years of

expensive therapy and all the tools available to his parents at the

time, speechwise the child sounded worse than he did 8 years ago.

Balance and coordination-wise he was doing better. It was the day I

reviewed that tape that it hit me I would do anything safe to help my

child and that I no longer cared if I was asking the same questions

over and over and annoying people I loved and respected. It was also

that video that woke my husband up. With that said, every single

child is different. If you read the archives you can see that. No one

knows what causes this. So far there are kids who have this condition

in connection with autism, allergies, genetic disorders, etc. Getting

a handle on what your child's apraxia might be connected to may

better help you address it. That is my approach and hope anyway. I

mention all of that because, for example, if a kids apraxia is

related to allergy and he gets less allergic to exposure over time

and grows well, there might be a chance that he will fare better as

an adult (a hope I have for my son). If a child has this as related

to a strole, I would imagine it depends on the severity of the

stroke. I have heard of dyspraxics who seem merely quiet and

intelligent as adults. Others seem aloof. I think the answer to your

question, what does an adult who suffered childhood apraxia look

like, depends on what caused it in the first place and what was done

to alleviate some of the symptoms. I think that answer is the one we

are all seeking and we are all working hard to find the right help

for our kids so that as adults our children will have the best

transition we could help them get.

>

> Hi,

>

> As I continue down the path researching everything under the sun, I

> keep coming to the same question. Everything I read talks

> about " childhood " apraxia and it seems this diagnosis is new within

> the last 10-15 years. So before it became well-known (relatively

> speaking), what did parents do? I mean did all children with

apraxia

> 30 years ago get some sort of therapy? Are there adults out there

> today that can't speak because they never got the help they needed

> back when they were a child?

>

> I know that adults can get apraxia following a stroke or other

brain

> trauma but what about the adults that had apraxia from the get go?

> Who are they? Where are they? And what sort of lives do they lead?

>

> Still just trying to make this all make sense.

>

> I do love my boys because they are who they are BUT as their parent

I

> really feel this urge to make available to them the tools that can

> best help them reach their potential. Talking with SLP's it still

> seems like there is so much unknown about what helps and in the end

> how much of success was dependent upon the therapy they received as

> little ones and how much was due to brain maturation. I know its a

> combination of both but I get the feeling the approach is kind of a

> shot in the dark versus a very calculated process knowing exactly

> what will help.

>

> Anyway, back to the question...adults...do any of you know of

adults

> who had apraxia as a child?

>

> Thank you so much!!

>

October 4, 2007

In my family there was a man whom didn't speak, but could hear. He

used home signs with his family members and writing. He's passed on

now, I believe. I have never met him, only heard of him as he is in my

husband's extended family.

But if you look at history you will see " mutes " far back into time.

When I say mute I mean someone who is hearing but not speaking or

'hard-of-speaking' (this is my own made up term). Moses from the

Bible, had speech difficulties. Remember the Bible story when God

tells Moses to go speak to the people, and Moses is like " what ? huh,

God, you know I can't speak!' Also, one of Julius Caesar's clan was

also mute.

Being mute is much more rare than those that are Deaf, physically

disabled, etc.. but there are some people like this in the world.

It is important to keep fighting for your kids no matter what.

But it is also important to know that no matter what, our kids have

just as much chance to be happy as anyone else.

Our kids often fall in the low percentile range, for speech abilities,

motor etc. But I do think that our kids can have a much greater chance

than " normal kids " of acquiring some beautiful and amazing human

characteristics such as compassion, forgiveness, patience and even

more.(Say who has a kid with apraxia with a remarkable characteristic

like this ? Let's hear it !) If they were to measure this, I think

our kids would be in the highest percentiles in those areas ).

Someone said something to me the other day that really made sense.. I

never thought about this in this way.. they said " In Life, it is NOT

your abilities that matter, it is your choices " And it is so true.

Look at Helen Keller, she was Deaf and Blind but led a very full life,

read more than 7 languages, and did work that she was so passionate

about, helping children all over the world. There are plenty of people

with much greater abilities than Hellen Keller,(think of your own

examples here) yet due to their choices, they did not make a positive

impact on the world, and did not lead full lives.

Always have hope, always keep fighting. Accept and love your child TODAY.

October 4, 2007

Hi -

I wanted to respond to this, because my husband is very apraxic,

although he did not have a name for it until our daughter was

diagnosed.

He was held back in kindergaten because he did not speak. He then

went to a special ed class for a year. and then joined a typical

first grade, again because he did not speak, 2 years behind his

peers. His father remembers that he was very quiet, and hard to

understand. His sister had to translate for him.

It was different 30 yrs ago. He did not get years of speech therapy.

As a matter of fact, no one was too concerned. Overall, you would

hardly know there was an issue now. When he is under stress, he

really gropes for words, and in general does not communicate easily,

but his speech is fine, (a little slurred sometimes).

Anyway, thought I would share.

>

> Hi,

>

> As I continue down the path researching everything under the sun,

I

> keep coming to the same question. Everything I read talks

> about " childhood " apraxia and it seems this diagnosis is new

within

> the last 10-15 years. So before it became well-known (relatively

> speaking), what did parents do? I mean did all children with

apraxia

> 30 years ago get some sort of therapy? Are there adults out there

> today that can't speak because they never got the help they needed

> back when they were a child?

>

> I know that adults can get apraxia following a stroke or other

brain

> trauma but what about the adults that had apraxia from the get go?

> Who are they? Where are they? And what sort of lives do they lead?

>

> Still just trying to make this all make sense.

>

> I do love my boys because they are who they are BUT as their

parent I

> really feel this urge to make available to them the tools that can

> best help them reach their potential. Talking with SLP's it still

> seems like there is so much unknown about what helps and in the

end

> how much of success was dependent upon the therapy they received

as

> little ones and how much was due to brain maturation. I know its a

> combination of both but I get the feeling the approach is kind of

a

> shot in the dark versus a very calculated process knowing exactly

> what will help.

>

> Anyway, back to the question...adults...do any of you know of

adults

> who had apraxia as a child?

>

> Thank you so much!!

>

October 5, 2007

Wendi,

Indeed, thank-you for sharing. I am sorry for any pain that your husband

endured but his story gives a lot of hope to us all! Does he feel that this

issue had any lasting emotional scars? Sometimes that is the 'real' item that I

worry about, the confidence and emotional issues that surround being different

as a child and longing to 'fit in'.

Janice

[sPAM] [ ] Re: What do adults who had Childhood

Apraxia look like?

Hi -

I wanted to respond to this, because my husband is very apraxic,

although he did not have a name for it until our daughter was

diagnosed.

He was held back in kindergaten because he did not speak. He then

went to a special ed class for a year. and then joined a typical

first grade, again because he did not speak, 2 years behind his

peers. His father remembers that he was very quiet, and hard to

understand. His sister had to translate for him.

It was different 30 yrs ago. He did not get years of speech therapy.

As a matter of fact, no one was too concerned. Overall, you would

hardly know there was an issue now. When he is under stress, he

really gropes for words, and in general does not communicate easily,

but his speech is fine, (a little slurred sometimes).

Anyway, thought I would share.

>

> Hi,

>

> As I continue down the path researching everything under the sun,

I

> keep coming to the same question. Everything I read talks

> about " childhood " apraxia and it seems this diagnosis is new

within

> the last 10-15 years. So before it became well-known (relatively

> speaking), what did parents do? I mean did all children with

apraxia

> 30 years ago get some sort of therapy? Are there adults out there

> today that can't speak because they never got the help they needed

> back when they were a child?

>

> I know that adults can get apraxia following a stroke or other

brain

> trauma but what about the adults that had apraxia from the get go?

> Who are they? Where are they? And what sort of lives do they lead?

>

> Still just trying to make this all make sense.

>

> I do love my boys because they are who they are BUT as their

parent I

> really feel this urge to make available to them the tools that can

> best help them reach their potential. Talking with SLP's it still

> seems like there is so much unknown about what helps and in the

end

> how much of success was dependent upon the therapy they received

as

> little ones and how much was due to brain maturation. I know its a

> combination of both but I get the feeling the approach is kind of

a

> shot in the dark versus a very calculated process knowing exactly

> what will help.

>

> Anyway, back to the question...adults...do any of you know of

adults

> who had apraxia as a child?

>

> Thank you so much!!

>

October 6, 2007

Thank you all for sharing.

Wendi, I'm so happy you responded. I am very sorry for your husband

as well but its so reassuring to hear about someone who has

essentially come out on the other side without all the tools we have

to help today.

I spoke in great length with the SLP we just started seeing for

private ST. I asked her the same question I posted here. She said,

most children with apraxia years ago did eventually go on to speak.

however, since there wasn't a diagnosis back then its hard to go back

and say so and so had apraxia.

Anyway, my point is that our SLP said as kids get older they tend to

be able to figure out that they sound different and have more of an

internal motivation and drive to figure it out through practice on

their own. The big push for EI these days is to prevent the self-

esteem issues that come from being behind their peers and being

unable to effectively communicate while your mind understands

everything that goes on around you. They know they are different and

I imagine that can be a very hard reality to come to terms with when

the focus is about fitting in.

I'm terrified about the experience my boys my face in fitting in. I'm

thrilled to no end to know that the prognosis is good in the long

run. Its just the getting there part and their experience during that

time that causes me much, much anxiety.

Thanks again to all of you for your thoughts.

> >

> > Hi,

> >

> > As I continue down the path researching everything under the

sun,

> I

> > keep coming to the same question. Everything I read talks

> > about " childhood " apraxia and it seems this diagnosis is new

> within

> > the last 10-15 years. So before it became well-known

(relatively

> > speaking), what did parents do? I mean did all children with

> apraxia

> > 30 years ago get some sort of therapy? Are there adults out

there

> > today that can't speak because they never got the help they

needed

> > back when they were a child?

> >

> > I know that adults can get apraxia following a stroke or other

> brain

> > trauma but what about the adults that had apraxia from the get

go?

> > Who are they? Where are they? And what sort of lives do they

lead?

> >

> > Still just trying to make this all make sense.

> >

> > I do love my boys because they are who they are BUT as their

> parent I

> > really feel this urge to make available to them the tools that

can

> > best help them reach their potential. Talking with SLP's it

still

> > seems like there is so much unknown about what helps and in the

> end

> > how much of success was dependent upon the therapy they

received

> as

> > little ones and how much was due to brain maturation. I know

its a

> > combination of both but I get the feeling the approach is kind

of

> a

> > shot in the dark versus a very calculated process knowing

exactly

> > what will help.

> >

> > Anyway, back to the question...adults...do any of you know of

> adults

> > who had apraxia as a child?

> >

> > Thank you so much!!

> >

>

October 7, 2007

Janice,

I am glad this offers hope! Unfortunately, it did cause some pretty

hefty self esteem issues, and he still deals with them. But, he did

not have the support of a great family, and the wonderful parent

advocates the kids on this board do! I am sure if he did, he would

have fewer psychological scars. Even still, it worries me because

there is still so much our daughter can not say. and so much we

don't understand. So, if she is feeling sad or down, we don't always

know why, so we can't always explain it to her, and talk about it.

Makes being supportive that much harder! At the very least, she has

no doubts that her family believes she is amazing! My dh did not

have that. I have mentioned here before that they had recommended a

special ed. class for our daughter, but he did not want that for

her. I respect that, so we are home schooling. It has only been a

few weeks, but she is doing great. We were seeing self esteem issues

for her as well in both public and parochial schools. She would not

talk at school at all! At home she is doing great.

Wendi

> >

> > Hi,

> >

> > As I continue down the path researching everything under the

sun,

> I

> > keep coming to the same question. Everything I read talks

> > about " childhood " apraxia and it seems this diagnosis is new

> within

> > the last 10-15 years. So before it became well-known

(relatively

> > speaking), what did parents do? I mean did all children with

> apraxia

> > 30 years ago get some sort of therapy? Are there adults out

there

> > today that can't speak because they never got the help they

needed

> > back when they were a child?

> >

> > I know that adults can get apraxia following a stroke or other

> brain

> > trauma but what about the adults that had apraxia from the get

go?

> > Who are they? Where are they? And what sort of lives do they

lead?

> >

> > Still just trying to make this all make sense.

> >

> > I do love my boys because they are who they are BUT as their

> parent I

> > really feel this urge to make available to them the tools that

can

> > best help them reach their potential. Talking with SLP's it

still

> > seems like there is so much unknown about what helps and in

the

> end

> > how much of success was dependent upon the therapy they

received

> as

> > little ones and how much was due to brain maturation. I know

its a

> > combination of both but I get the feeling the approach is kind

of

> a

> > shot in the dark versus a very calculated process knowing

exactly

> > what will help.

> >

> > Anyway, back to the question...adults...do any of you know of

> adults

> > who had apraxia as a child?

> >

> > Thank you so much!!

> >

>

October 8, 2007

Wendi,

Your posts are incredible and give me personally so mch hope. How

special that both your husband and daughter have you in their lives

so they know how truly special they are and that they are cherished.

Liz

> > >

> > > Hi,

> > >

> > > As I continue down the path researching everything under the

> sun,

> > I

> > > keep coming to the same question. Everything I read talks

> > > about " childhood " apraxia and it seems this diagnosis is new

> > within

> > > the last 10-15 years. So before it became well-known

> (relatively

> > > speaking), what did parents do? I mean did all children with

> > apraxia

> > > 30 years ago get some sort of therapy? Are there adults out

> there

> > > today that can't speak because they never got the help they

> needed

> > > back when they were a child?

> > >

> > > I know that adults can get apraxia following a stroke or

other

> > brain

> > > trauma but what about the adults that had apraxia from the

get

> go?

> > > Who are they? Where are they? And what sort of lives do they

> lead?

> > >

> > > Still just trying to make this all make sense.

> > >

> > > I do love my boys because they are who they are BUT as their

> > parent I

> > > really feel this urge to make available to them the tools

that

> can

> > > best help them reach their potential. Talking with SLP's it

> still

> > > seems like there is so much unknown about what helps and in

> the

> > end

> > > how much of success was dependent upon the therapy they

> received

> > as

> > > little ones and how much was due to brain maturation. I know

> its a

> > > combination of both but I get the feeling the approach is

kind

> of

> > a

> > > shot in the dark versus a very calculated process knowing

> exactly

> > > what will help.

> > >

> > > Anyway, back to the question...adults...do any of you know of

> > adults

> > > who had apraxia as a child?

> > >

> > > Thank you so much!!

> > >

> >

October 8, 2007

Self esteem issues is the 'thing' I tend to worry about most and spend a lot of

time 'propping' up my son's sense of self-worth; i.e. who he is as a regular

guy, rather than a disabled apraxic person. The apraxia/dyspraxia we may one

day leave behind but the wounds it leaves on our soul are deep.

I know that it has been tough going for him and a long, long road.

Thank you for sharing.