Young Adult Reply to LIsa

[Guest guest]

Dear and Listmates,

Thank you all for your thoughtful responses. , I will respond to your ideas

and questions.

We just got back from the state of Ohio Special Olympics tournament where

's team prevailed to win the state championship. I believe I know why

they did so well - it is primarily due to a coach who knows the importance of

the social dynamics of team work and " teaches " it. This is important, she also

believes the girls can learn. She taught them strategies, confidence, and

appropriate aggressiveness. Other coaches tended to let them just play the best

they could - such a difference. has learned to build

self-confidence and assertiveness from this coach - there are angels along the

way.

Another point, the local paper does not report Special Olympic games except

as an occasional human interest article - not the sports section. I am calling

the sports editor today, nothing to lose!! Writing letters for the senate bill

felt really good - I put their addresses in my address book. So a call to a

sports editor is no big deal!! I intend to be a more " informing " voter.

Back to 's ideas and questions.

<< what an incredible update about , your lives, and the

new book! Please let us know when and where we can buy your new

book. It's so important for all to learn what it was like to grow

up with apraxia from years ago.>>

Times have changed to the better. was born in 1982 - so advocacy

and laws to provide opportunities were not well known. Early intervention was

just beginning. So our story will really be about what happened but the

wonderful information via the websites and the support via the listservs will

be what gets parents today what is currently available.

<<What type of therapies and school strategies were found to be most useful.

What social issues were like in school and in dating, what strategies were found

to be most successful.>>

I believe the social issues for are probably the most challenging.

I will share in the book how the dynamics have developed over the years, with

's permission off course. She does make progress in terms of

social-emotional issues but her personality and apraxia have made her a pretty

shy person but still happy and a good sense of self.

<< At 22 years old is comfortable with calling her speech impairment

developmental apraxia of speech? I appreciate

the word developmental may have been used for a reason years ago and

it just stuck -and it's better than all those children today with

the even worse " childhood apraxia of speech " diagnosis (who they too

will still say that's their diagnosis twenty years from now?!) but

isn't there a stigma to the word developmental being used in a

diagnosis for an adult? I know for example in aphasia they only

call it " developmental " in regards to children

" Consequently, the onset is usually sudden, although rare cases of

progressive aphasia in adults and childhood/developmental aphasia

have been documented "

http://www.aphasia.org/NAAquiz.htm >>

If someone asks her, will usually say she has apraxia which is a

motor flow impairment disability. She really is not aware of the political

correctness or issues with the words of diagnosis. Due to rarity of apraxia and

finding someone to actually make a diagnosis when was young, I really

didn't know what the label was until she became part of a study at Case

Western when she was 4 or 5. The researchers, Dorothy Aram and Hall, were

the ones to say she has apraxia and the reports used the words Developmental

Apraxia of Speech. So those are the words I've used over the years. Her

apraxia is certainly a condition from birth not due to injury. Developmental

seems to fit but that word has taken on connotations of low cognitive ability

which doesn't fit. There just are so many complicated issues surrounding

apraxia and that's the way it is. That's why listsev conversations are so

important.

<<Actually I have a suggestion for or anyone that is older

and has a noticeable impairment of speech still. When Tanner was first

diagnosed I contacted the National Aphasia Organization who will

outreach to those with impairments 13 and above I believe. They

sent me this awesome package of information which included these

cards for their members to carry that say things like

" I am not drunk

I am not deaf

I have an impairment of speech called aphasia " (something like that)

http://www.aphasia.org/ >>

LIsa, thank you. I will look up the info on the cards explaining the

disability. I tried really hard to get this to be part of IEP her last few

years of high school but it never really took. As was typical, none of the

school people could understand the need for such a personalized card, and

was not keen on the idea (who wants to buck the " culture " ). When I

think back, this would be a strategy that would be appropriate for many of the

special ed. students at her high school. At this point, 's speech is

fairly clear and she seems to be able to participate as she wants to at the

community college with the support of the Disability Services Center. At the

beginning of each quarter, she turns in a form to each professor that tells the

services she is entitled to. She has to ask what for what she needs knowing that

" they " will not ask her. She is very aware of others who turn in the same

form. My sense is that having disabilities at the college level is much less a

stigma than at the high school level - thank God!!

<<Please again let us know when the book will be out -I just can't

wait to read it!! So glad you are back!!>>

At this point the book is in my head and about 10-15 large plastic totes.

So, my plan to is to start this summer and finish in a timely manner. I am

retired but I have been developing a small craft/jewelry business that seems to

take a lot of time and effort. I have health challenges so my energy is

limited so I will weave the two. I will gladly and loudly let you know when

the book is available. If there are any authors out there who have any

suggestions about the process of writing and then getting published, please

share whatever you think would be helpful.

Thanks to all!!

Beu - Mom to 22 DAS - I now have the wonderful perspective of

hindsight for the first 20 years, which means I can't change how it all

happened but can only share what I have learned!!