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Re: [MDS]

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Jennie

I am so sorry that you are having such a time with the school! I have been in

your shoes when all they heard was Down syndrome and didn't " hear " mosaic. In

first grade Tim was evaluated by our Special Education diagnostition. After the

evaluation, she told me that Tim had OUTGROWN his Down syndrome!!!!!! Some

people just don't listen at all! LOL

We have several papers on our site that may help you to print out. The IQ

score is noted as 12 points higher (although that is a mean number. My son's IQ

is 110 so you can never say for sure that the average is always the case)

Here are some links that may help you.

This paper talks about the IQ, development, and explains what MDS is.

http://www.imdsa.com/Mosaic_Down_Syndrome_Len_Leshin.pdf

This is the MDS study done by VCU. In order to get the complete book you have

to call them to request it. I will say that I think they are out of books at

this time, so you can call to request one, but don't hold your breath waiting

for it.

http://www.imdsa.com/VCU.htm

These are general facts on MDS. It does talk about development and delays

http://www.imdsa.com/Mosaic_Down_Syndrome_Facts.pdf

Here is the link to our brochure.

http://www.imdsa.com/IMDSA_Brochure.pdf

Jennie wrote:

I think I remember reading somewhere or hearing about it on this chat

board, that MDS children have an average IQ score that is 20 points

higher than DS children. Is that true? Can anyone direct me to a

site or book for research proof? I'm supposed to be meeting with the

assistant principal at 's school (after a frustrated phone

call to the board of education superintendent yesterday afternoon).

The Assistant Superintendent is also telling me (as did the special

ed lead teacher) that 's IQ is too high for DS and I keep

telling them, " it's MDS " but that seems to escape them or something.

So if I can meet the assistant principal with some

research/proof/hard evidence that can have MDS and a higher

IQ and still need assistance in the classroom, it would be better

than just saying, " well, the people on imdsa said... or I think I

read it somewhere... "

Meanwhile, 's neuropsychologist who did his testing (which the

school is telling me is insufficient) is going to the school tomorrow

and has promised she will address my sons's case with the school

psychologist to " straighten this mess out "

Jennie

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  • 5 months later...

well.... my only girl is 10 too, so we haven't reached that milestone

yet...but I was 12 when I started mine. I hear many girls are starting younger

and younger these days though... but, I guess that's no indication of when our

girls might start!! hmph...

I got my daughter a book on puberty, by, I think its called, " American

Girl " ....they have all kinds of neat girl stuff...books on self esteem, puberty,

just plain girly stuff like journals, etc...and I think they even have a

magazine you could subscribe to... The book on puberty I got my

daughter...it's

written for kids....so, all cartoony, and the language is easier for them to

understand... not a long drawn out book of paragraphs type of book. I

think they have a website....

Angel

mom to ...who has turned 14 now!!!! :::gulp::: MDS/HD

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In a message dated 1/30/2007 2:00:01 P.M. Mountain Standard Time,

Caregar@... writes:

We've read the American Girl book, " The Care and Keeping of You. " It is

well illustrated, easy for her to understand, and it covers a lot.

Thank you Sue....that's exactly the book I meant!!

Angel

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Hi,

My got her first period shortly after she turned 12. She's handled it

well, except that every time she gets it, she asks if the baby is in her uterus

yet. I always tell her no, that women don't usually have babies until they are

in their 30's (like me) and that some women decide not to have babies at all. I

figure we can leave it like that for now.

We've read the American Girl book, " The Care and Keeping of You. " It is well

illustrated, easy for her to understand, and it covers a lot.

The hardest thing for us has been her severe PMS mood swings on top of her other

behavior challenges.

Sue

(Norah 18, 13 mds & adhd)

Good Afternoon:

I am looking for some advice on puberty. My daughter is 10 and is starting to

develop and was wondering if anyone has any suggestions for good books to read

associated with the subject?

I was also wondering what the average age your daughters got their periods for

the first time. I know a girl with DS in Shyanna's dance class got hers last

year and she was 12. At this point, I'm not sure how Shyanna will deal with the

responsibilty.

Any advice would be appreciated.

Bobbie, mom to Shyanna (10-mds) and Shayla (7)

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I am finding that she is starting the mood swings now which gives me the

indication that her period might follow. Did start mood swings a while

before she got her period?

I found the book on Amazon and it's only $10 so I think I'll start with that

since I've heard two good stories. I did ask her special ed teacher but she has

two boys. = )

Oh, the joys of motherhood! = )

Thanks for the title of the book.

Bobbie, mom to Shyanna (10-mds) and Shayla (7)

Good Afternoon:

I am looking for some advice on puberty. My daughter is 10 and is starting to

develop and was wondering if anyone has any suggestions for good books to read

associated with the subject?

I was also wondering what the average age your daughters got their periods for

the first time. I know a girl with DS in Shyanna's dance class got hers last

year and she was 12. At this point, I'm not sure how Shyanna will deal with the

responsibilty.

Any advice would be appreciated.

Bobbie, mom to Shyanna (10-mds) and Shayla (7)

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Katy was about 13 when she started hers. She had severe cramping the first few

times and it was very heavy. I took her to my GYN dr. and they did an ultra

sound only just to make sure everything looked good and then he put her on

Progesterone and that seemed to help lighten up her period. I told me I could

consider the pill, but I didn't want to do anything unless absolutely necessary.

Anyway, after only about 3 months on the progesterone, her next period seemed

normal and she was fine after that. She handles it just fine and is able to

change her pad independently. One day when we were shopping my stomach was

cramping because of something I had eaten - we had just gotten in the van, and I

said, " Oh, my stomach is cramping " . Katy looked right at me and said, " Mom, do

you need a tampon? " I fell out laughing - it seemed so funny coming from her

and she doesn't even know what a tampon is. She had picked up that line from

" Miss Congeniality II " - the Bullock movie.

Charlotte

Good Afternoon:

I am looking for some advice on puberty. My daughter is 10 and is starting to

develop and was wondering if anyone has any suggestions for good books to read

associated with the subject?

I was also wondering what the average age your daughters got their periods for

the first time. I know a girl with DS in Shyanna's dance class got hers last

year and she was 12. At this point, I'm not sure how Shyanna will deal with the

responsibilty.

Any advice would be appreciated.

Bobbie, mom to Shyanna (10-mds) and Shayla (7)

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That was classic! Kids are great! I know another DS child that was put on the

depo shot to stop her periods because she wasn't handling the responsibility.

She gained a lot of weight with that so they stopped.

I was also wondering, did you show her the use of a pad before she got her

period? I'm not sure if I want to, but I am pregnant, due in May. I figured

after the baby comes and I have to use pads, I might show her what they are for

and how to change them. Not sure if that is something that would work or not.

Any suggestions?

Bobbie

Good Afternoon:

I am looking for some advice on puberty. My daughter is 10 and is starting to

develop and was wondering if anyone has any suggestions for good books to read

associated with the subject?

I was also wondering what the average age your daughters got their periods for

the first time. I know a girl with DS in Shyanna's dance class got hers last

year and she was 12. At this point, I'm not sure how Shyanna will deal with the

responsibilty.

Any advice would be appreciated.

Bobbie, mom to Shyanna (10-mds) and Shayla (7)

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In addition to MDS has a mood disorder so mood swings have always been an

issue. However, I did notice an increase in the severity about 9 months before

she got her first period. She doesn't get them regularly yet, but I can always

tell when it's coming.

good luck,

Sue

(Norah 18, 13 mds & adhd)

Re:

I am finding that she is starting the mood swings now which gives me the

indication that her period might follow. Did start mood swings a while

before she got her period?

I found the book on Amazon and it's only $10 so I think I'll start with that

since I've heard two good stories. I did ask her special ed teacher but she has

two boys. = )

Oh, the joys of motherhood! = )

Thanks for the title of the book.

Bobbie, mom to Shyanna (10-mds) and Shayla (7)

Good Afternoon:

I am looking for some advice on puberty. My daughter is 10 and is starting to

develop and was wondering if anyone has any suggestions for good books to read

associated with the subject?

I was also wondering what the average age your daughters got their periods for

the first time. I know a girl with DS in Shyanna's dance class got hers last

year and she was 12. At this point, I'm not sure how Shyanna will deal with the

responsibilty.

Any advice would be appreciated.

Bobbie, mom to Shyanna (10-mds) and Shayla (7)

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In a message dated 1/30/2007 5:31:08 P.M. Eastern Standard Time,

bmayfield@... writes:

I was also wondering, did you show her the use of a pad before she got her

period? I'm not sure if I want to, but I am pregnant, due in May. I figured

after the baby comes and I have to use pads, I might show her what they are for

and how to change them. Not sure if that is something that would work or

not. Any suggestions?

Bobbie

Bobbie:

My daughter got her period when she was 11 yrs old, about 3 months before

she turned 12. I had shown her pads and how to use them long before she ever

got her period, this way it wasn't something totally new to her. She handled

it just fine. In fact, this past summer she learned how to use a very small

tampon for swimming in the pool, although she doesn't like to use them all

the time. Her periods were very irregular for the first 9 or 10 months,

getting 2 in a month or skipping months and they seem to last a long time.

After

about a year it did regulate itself. I give her motrin for cramps and she

doesn't seem to have any problems.

If you haven't already, I would definitely start talking to her about it, in

very simple terms, that way when it happens it won't scare her. For some

reason, couldn't wait to get her period. Now that she has it, I

think she is less than thrilled! Good luck.

ann

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I have had the same questions about Mahrya who is also 10 right now. So far she

is not showing sins of developing, and her sister was 13. I am hoping it holds

off till we get the bed wetting issue resolved! Thanks for bring the topic up

Bobbie!

Luanne

Bobbie Mayfield wrote:

I am finding that she is starting the mood swings now which gives me

the indication that her period might follow. Did start mood swings a while

before she got her period?

I found the book on Amazon and it's only $10 so I think I'll start with that

since I've heard two good stories. I did ask her special ed teacher but she has

two boys. = )

Oh, the joys of motherhood! = )

Thanks for the title of the book.

Bobbie, mom to Shyanna (10-mds) and Shayla (7)

Good Afternoon:

I am looking for some advice on puberty. My daughter is 10 and is starting to

develop and was wondering if anyone has any suggestions for good books to read

associated with the subject?

I was also wondering what the average age your daughters got their periods for

the first time. I know a girl with DS in Shyanna's dance class got hers last

year and she was 12. At this point, I'm not sure how Shyanna will deal with the

responsibilty.

Any advice would be appreciated.

Bobbie, mom to Shyanna (10-mds) and Shayla (7)

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Shyanna recently stopped wearing pull ups at night time. I would say after the

first of the year we decided when she sleeps in her bed (since it has a cover)

she won't wear a pull up. If she sleeps on the couch or at someone else's

house, she will wear one. So far she hasn't had any accidents. We limit the

amount of liquids she has after supper time, and make sure she goes potty before

bed.

She potty trained when she was 5 because her sister was. Now we have another

baby coming in May and I told her I don't want to buy pulls and diapers if I

don't have to. I guess must have given her the initiative to work hard at it.

She'll be 11 in April so I'm hoping she won't have any accidents and be good to

go!

I did have the same thought though about getting the bed wetting resolved before

the periods come. I was in fifth grade when I got mine, if Shyanna wouldn't

have done two years of kindergarten, she would be in fifth grade now.

Bobbie

Good Afternoon:

I am looking for some advice on puberty. My daughter is 10 and is starting to

develop and was wondering if anyone has any suggestions for good books to read

associated with the subject?

I was also wondering what the average age your daughters got their periods for

the first time. I know a girl with DS in Shyanna's dance class got hers last

year and she was 12. At this point, I'm not sure how Shyanna will deal with the

responsibilty.

Any advice would be appreciated.

Bobbie, mom to Shyanna (10-mds) and Shayla (7)

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I did not show her the use of the pad before hand. Not sure if it would have

made a difference. I was hoping that because she delayed in everything else,

maybe her period would also be delayed. NOT! One doctor had said that when they

start to get hair under their arms, that is when their periods usually start.

Well, Katy had no hair under her arms and still doesn't. At least we won't ever

have to worry about shaving under her arms. However, I think that hair is

growing around her ankles - it seems that hair around her ankle area is darker

and the rest of the hair on her legs is blonde. Odd. I did tell her when it

happened that it was something personal and that she shouldn't talk about it at

school or to other people. She did great with that and hasn't brought it up in

public.

Charlotte

Good Afternoon:

I am looking for some advice on puberty. My daughter is 10 and is starting to

develop and was wondering if anyone has any suggestions for good books to read

associated with the subject?

I was also wondering what the average age your daughters got their periods for

the first time. I know a girl with DS in Shyanna's dance class got hers last

year and she was 12. At this point, I'm not sure how Shyanna will deal with the

responsibilty.

Any advice would be appreciated.

Bobbie, mom to Shyanna (10-mds) and Shayla (7)

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I'm not sure if Shyanna will be that good about keeping it a secret. She is

starting to get pubic hair and has been itching it. I tell her not to do that

because it's not polite.

Last weekend my cousin and her son were over and she had to show Zach her bra.

She pulled her shirt down and said, " See! " I told her that is private and she

shouldn't show boys or anyone else her private parts. I haven't heard of her

showing anyone at school.

I'm hoping that the period holds off though.

Thanks for the conversation.

Bobbie

Good Afternoon:

I am looking for some advice on puberty. My daughter is 10 and is starting to

develop and was wondering if anyone has any suggestions for good books to read

associated with the subject?

I was also wondering what the average age your daughters got their periods for

the first time. I know a girl with DS in Shyanna's dance class got hers last

year and she was 12. At this point, I'm not sure how Shyanna will deal with the

responsibilty.

Any advice would be appreciated.

Bobbie, mom to Shyanna (10-mds) and Shayla (7)

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We've done the limiting drinks thing, and the making sure she goes right before

bed, all to no avail, I think she has only had like one or two dry nights in her

life....but we have not tried going without the pull up, she knows she has that

security, and I am not a huge laundry fan either. Maybe when the weather gets

warmer again I will brave the trying without pull ups. Mahrya will be 11 in

Oct. and so far the Dr. just says give her more time....

Luanne

Bobbie Mayfield wrote:

Shyanna recently stopped wearing pull ups at night time. I would say

after the first of the year we decided when she sleeps in her bed (since it has

a cover) she won't wear a pull up. If she sleeps on the couch or at someone

else's house, she will wear one. So far she hasn't had any accidents. We limit

the amount of liquids she has after supper time, and make sure she goes potty

before bed.

She potty trained when she was 5 because her sister was. Now we have another

baby coming in May and I told her I don't want to buy pulls and diapers if I

don't have to. I guess must have given her the initiative to work hard at it.

She'll be 11 in April so I'm hoping she won't have any accidents and be good to

go!

I did have the same thought though about getting the bed wetting resolved before

the periods come. I was in fifth grade when I got mine, if Shyanna wouldn't have

done two years of kindergarten, she would be in fifth grade now.

Bobbie

Good Afternoon:

I am looking for some advice on puberty. My daughter is 10 and is starting to

develop and was wondering if anyone has any suggestions for good books to read

associated with the subject?

I was also wondering what the average age your daughters got their periods for

the first time. I know a girl with DS in Shyanna's dance class got hers last

year and she was 12. At this point, I'm not sure how Shyanna will deal with the

responsibilty.

Any advice would be appreciated.

Bobbie, mom to Shyanna (10-mds) and Shayla (7)

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I know we tried it a few months before this time around. She had an accident

every other night, so I hear ya about the laundry! Also, one night she woke up

and walked halfway down the stairs, must have forgot what she was doing, and

peed all over our carpeted steps. That was a mess. I quit after that for a few

months and now we're back at it. I guess once it gets warm, you could do a

trial to see if it will be worth it, if not, just give it a couple months and

try again.

Just out of curiosity, does she have accidents throughout the day? I would say

Shyanna has either a wet or bowel accident about every 3 months, nothing

regular. The bowel accidents are just minor, almost as if she's on her way but

can't wait.

Bobbie

Good Afternoon:

I am looking for some advice on puberty. My daughter is 10 and is starting to

develop and was wondering if anyone has any suggestions for good books to read

associated with the subject?

I was also wondering what the average age your daughters got their periods for

the first time. I know a girl with DS in Shyanna's dance class got hers last

year and she was 12. At this point, I'm not sure how Shyanna will deal with the

responsibilty.

Any advice would be appreciated.

Bobbie, mom to Shyanna (10-mds) and Shayla (7)

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Shyanna sounds a lot like Mahrya. Mahrya does have an accident every few

months, not usually bowel. She did have a problem with a urinary tract

infection and that caused a few accidents. After she was on the antibiotic it

cleared up. Sometimes Mahrya will wait too long if she is playing outside and

not make it in, so I try and remind her to go right before she goes outside. I

think she gets so engrossed in her play that she blocks out early feelings of

needing to go...either that or she just doesn't want to stop playing...

It is nice to hear you are having success, it makes me hopeful that we will

too.

Luanne

Bobbie Mayfield wrote:

I know we tried it a few months before this time around. She had an

accident every other night, so I hear ya about the laundry! Also, one night she

woke up and walked halfway down the stairs, must have forgot what she was doing,

and peed all over our carpeted steps. That was a mess. I quit after that for a

few months and now we're back at it. I guess once it gets warm, you could do a

trial to see if it will be worth it, if not, just give it a couple months and

try again.

Just out of curiosity, does she have accidents throughout the day? I would say

Shyanna has either a wet or bowel accident about every 3 months, nothing

regular. The bowel accidents are just minor, almost as if she's on her way but

can't wait.

Bobbie

Good Afternoon:

I am looking for some advice on puberty. My daughter is 10 and is starting to

develop and was wondering if anyone has any suggestions for good books to read

associated with the subject?

I was also wondering what the average age your daughters got their periods for

the first time. I know a girl with DS in Shyanna's dance class got hers last

year and she was 12. At this point, I'm not sure how Shyanna will deal with the

responsibilty.

Any advice would be appreciated.

Bobbie, mom to Shyanna (10-mds) and Shayla (7)

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We never practiced with the pads, but did see them and knew what they

would be for. Of course, once she got her period, she thought the pads should

be hers to play with. On the way home from camp last year she emptied her

duffle and plastered pads all over her doll.

Also, at first, we did have to explain to her that pads were not pull-ups (which

she had just finished with two months before she got her period.) She would

have accidents and think if was okay because she had a pad on. She doesn't do

that anymore.

Sue

Re:

I did not show her the use of the pad before hand. Not sure if it would have

made a difference. I was hoping that because she delayed in everything else,

maybe her period would also be delayed. NOT! One doctor had said that when they

start to get hair under their arms, that is when their periods usually start.

Well, Katy had no hair under her arms and still doesn't. At least we won't ever

have to worry about shaving under her arms. However, I think that hair is

growing around her ankles - it seems that hair around her ankle area is darker

and the rest of the hair on her legs is blonde. Odd. I did tell her when it

happened that it was something personal and that she shouldn't talk about it at

school or to other people. She did great with that and hasn't brought it up in

public.

Charlotte

Good Afternoon:

I am looking for some advice on puberty. My daughter is 10 and is starting to

develop and was wondering if anyone has any suggestions for good books to read

associated with the subject?

I was also wondering what the average age your daughters got their periods for

the first time. I know a girl with DS in Shyanna's dance class got hers last

year and she was 12. At this point, I'm not sure how Shyanna will deal with the

responsibilty.

Any advice would be appreciated.

Bobbie, mom to Shyanna (10-mds) and Shayla (7)

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Karlee is certainly not to the puberty point, but I have a friend (locally) who

has a daughter with ds and she recently started her period. She is doing well,

but she read the AMERICAN GIRL BOOK, THE KEEPING OF YOU, its a book about your

body and how to take care of it when it changes. She loved it and said it was

truly on point. She did say that her period has been extremely light, so she

just puts two pantiliners in each pocket and she changes them herself throughout

the day and does a great job with it. So, that's all the puberty knowledge I

have.

Beets

Re:

well.... my only girl is 10 too, so we haven't reached that milestone

yet...but I was 12 when I started mine. I hear many girls are starting younger

and younger these days though... but, I guess that's no indication of when our

girls might start!! hmph...

I got my daughter a book on puberty, by, I think its called, " American

Girl " ....they have all kinds of neat girl stuff...books on self esteem, puberty,

just plain girly stuff like journals, etc...and I think they even have a

magazine you could subscribe to... The book on puberty I got my daughter...it's

written for kids....so, all cartoony, and the language is easier for them to

understand... not a long drawn out book of paragraphs type of book. I

think they have a website....

Angel

mom to ...who has turned 14 now!!!! :::gulp::: MDS/HD

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Thanks! This is the first real subject that I've needed advice on since I've

joined. I wish I would've been in the group since it started.

Thanks for all the advice everyone! Sounds like the book is a must.

Bobbie

Re:

well.... my only girl is 10 too, so we haven't reached that milestone

yet...but I was 12 when I started mine. I hear many girls are starting younger

and younger these days though... but, I guess that's no indication of when our

girls might start!! hmph...

I got my daughter a book on puberty, by, I think its called, " American

Girl " ....they have all kinds of neat girl stuff...books on self esteem,

puberty,

just plain girly stuff like journals, etc...and I think they even have a

magazine you could subscribe to... The book on puberty I got my

daughter...it's

written for kids....so, all cartoony, and the language is easier for them to

understand... not a long drawn out book of paragraphs type of book. I

think they have a website....

Angel

mom to ...who has turned 14 now!!!! :::gulp::: MDS/HD

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  • 3 months later...
Guest guest

Hi Bobbie

Enjoy your maternity leave while you can!

Go to: http://health.groups.yahoo.com/group/MosaicDS/

Then, at the top, under your screen name where it says " Welcome " you will see

a link that says " My Account " Click that and there is where you can change your

email for the group.

When is the baby due to arrive?

Kristy

Bobbie Mayfield wrote:

Good Morning Kristy:

Today is my last day of work, I finally get to start my maternity leave. I was

wondering how I go about changing the email address that these emails are sent

to.

Thanks!

Bobbie Mayfield

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  • 2 months later...
Guest guest

Maureen,

I'm so sorry about your husband! It sounds like you're being strong for

your boys...they seem to have such a hard time sometimes expressing emotions...

I have a stepson who internalized every trauma he went thru as a child, and I

wish I'd seen it then and worked on it. Sounds like Andy is able to

vocalize how he's feeling, that's good, and I hope Tyler's well too!!

~ANGEL~

Mom to 14 Mosaic Down's/Hirschsprung's Disease

Tyler 15, 12,

Jaeda 11 & Shayne 5

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

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Guest guest

Maureen

I am so glad that Andy (boy, that is going to be hard to get used to!) did so

well in school! I am proud of him too!

On your other note, I am so deeply sorry. I can not imagine the depth of your

loss. I will be praying for you, Tyler and Andy. I imagine that it is difficult

for you and for the boys. Please know that if you ever need to talk I am just a

phone call away!

Kristy

maureen ferris wrote:

I've been having trouble sending messages to this group lately so I

registered again with yahoo groups so hopefully I'm all set.

I just wanted to tell everyone how proud I am of (who now likes to be

called Andy)! He just finished third grade at our local elementary school.

Halfway through the year, the Moderate Special Needs teacher told me Andy didn't

want to be pulled from the classroom and would I be open to trying full

inclusion. He was doing well and the Teacher was agreeable so, of course, I said

yes. And he did so well it's now in is IEP that he be full inclusion for 4th

Grade! If he needs extra help in any area, he can still be pulled for that but

it's on an as needed basis. This is what I wanted for him but, honestly, wasn't

sure it would happen in elementary school. Sometimes I just love being wrong!

On a sad note, my husband passed away unexpectedly this past March. Tyler, who's

now 13, seems to be doing well but doesn't want to talk about it. It's seems to

be hitting Andy now. He told his Speech Therapist yesterday that he just wants

things to go back to the way they're suppose to be. Part of it could be I just

got rid of the bed, Steve's clothes and some furniture in the bedroom. The EMTs

broke the bed but even if they hadn't, it's where he died and I couldn't bring

myself to sleep in it anyway. Andy hates change and maybe this is too soon to

make changes but I really need a bed and a friend came over with his truck so it

was a chance to remove everything at once. I asked Andy to help me fix up my

room a little and he seemed to like that. I just need to make the room look

different. Maybe if he died somewhere else I'd feel differently. I just hate

being in that room right now. Maybe as we go along, I can explain to Andy why I

need to change it so he'll understand but

I don't want to throw too much at him all at once either.

Well, that's it for now.

Maureen, mother to Tyler, 13 and Andy, 9 (MDS)

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