Re: Enrolling in Pre-k

January 14, 2010

Camisha hello!!

It really at the end of the day your choice if you want to put a title there. We

are all humans beings, and I agree with you " no " different . I would in fact

answer that question, " Has your child been diagnosed w/any learning

disabilities, mental, or emotional disorders?? " Because it would better the

teachers, you, and her equally. To help her, yet you can also have a

conversation with her teachers as a parent teacher meeting. That way your

letting them know about MDS, and you're expressing to the teachers your feelings

about things in terms of title. We also have some information on our website to

help you with that. If you'd like, I can find that link for you, and e-mail it

to you?

Casey T. Morton

IMDSA NewsLetter Editor

Subject: Re: Enrolling in Pre-k

To: MosaicDS

Date: Wednesday, January 13, 2010, 12:38 PM

Â

I am in the same place.Â My daughter just turned 3 and is in pre-k.Â I

am very open about Isabella.Â She has no features that would make some one

think DS or MDS but I still felt it was important for the facility to know.Â I

went and saw the teacher and I explained the situation.Â I told her that I

wanted to be notified immediatley if she saw anything that she found out of the

ordinary.Â Now they are working on counting to 10 and Isabella can count to 15

but perhaps they will start working on phone numbers and maybe Isabella will

have a harder time.Â I would like to know that so I can work at home with

her.Â Â

sue

Isabella 3 mdsÂ

____________ _________ _________ __

From: angel4937 <chopkins@petrincorp .com>

To: MosaicDS@yahoogroup s.com

Sent: Mon, January 11, 2010 12:22:24 PM

Subject: Enrolling in Pre-k

Â

Hi...it's been a while since i've posted...for those of you that may not

remember me...my name is Camisha and my daughter Macie (MDS) made 2 on Nov..

1st. Macie shows no signs of problems (intellect, apperance or health) she has

reached every and all milestones on target. She is very smart and outgoing. I am

currently enrolling her into a local pre-school for 2-3 year olds. One of the

questions on the registration packet is .....

" Has your child been diagnosed w/any learning disabilities, mental, or emotional

disorders?? "

I have mixed emotions about if i should or shouldn't answer this question. I

know at some point there was something said about this here and i feel like i

want to give Macie a chance w/o a label. She is " no " different than the other

kids. I do worry that if she falls behind (lack of better word for a 2 year old

class) then i guess i would want to explain..but yet i don't either.

Has anyone been in this predictament and if so, how did you handle it??

Thanks, Camisha

January 14, 2010

Happy New Year everyone.

Camisha,

We still struggle with how best to share our 13 year old daughter's diagnosis.

She was diagnosed at 13 months and only because a new doc was concerned with her

" tiny ears. " Huge battles took place over the " who to tell " question. To this

day, my husband and I still have a difficult time with this. 's teachers

and doctors know about her having mds - we have never held that back from them -

it is what makes her eligible for special services which are the key to her

success at school.

We have continued to run into problems (right up to this summer) with 's

coaches, dance teachers, babysitters, etc. How and what do we tell them? We

don't want people to expect less of her, out of kindness or ignorance.

I have learned the hard way that it was necessary for me to share this

information with her coaches, babysitters and extracurricular teachers. For

example, soccer was fine in elementary school and I never said anything to her

coaches. There was no need to. However, 6th grade was a whole different story.

It became about winning and the fast pace of the game was too much for her.

Because of her processing speed, changing direction on a playing field can be

tough. 6th grade coach understood the situation when I talked to him and he was

grateful. He was great and worked with - she was the wing gal and she

only had to worry about that one spot . This year.....I told the new coach and

he said that he didn't have the extra time to work with and that the kids

had to be able to play several positions. Clearly it was about winning with

him. Because she loved the kids and the game she didn't want to quit - but it

broke our hearts.

Eventually on the days of games she became physically ill with nerves and we

pulled her out. I still have a difficult time when I see that coach.

What I have learned is that I was doing a disservice by not sharing this

information about her. This summer I ran into the same issue with camp. The

structure of the camp was totally wrong for her and if I had shared the

information with the camp staff they may have been able to help her out from the

get go. Instead, 3 days into camp fell apart - it was as simple as

having someone write her schedule down with locations, etc. Just that extra

support would have made a huge difference. On day 3 she had a melt down (never

had one before) - and we had to pick her up. I still feel guilty about that. I

feel like I set her up to fail. I have learned I have to be proactive and not

reactive.

There is no right or wrong answer but I can say that more good would have come

out of me sharing this information than bad. Despite some excellent wisdom and

advice from this group - I still have not found the right way to tell she

has mds and if I could go back in time - I would have found a simple way to tell

her when she was younger - because it is just a part of who she is - its not who

she is. I am still trying to figure out the when and how of telling her. I

know she will require genetic couseling when she chooses to have children. She

has a right to know and I have a responsibility to tell her......and I pray for

guidance and strength in telling her and perhaps having to also answer her

questions - including why I waited so long to tell her. I feel for

you....this is hard stuff - it pushes on our soft spots. I have been told that

I need to forgive myself for making these choices along the way - I haven't yet

and may be fine

with all of it, but the unknown is scary.

________________________________

To: MosaicDS

Sent: Thu, January 14, 2010 10:33:47 AM