help from all mom's of kindy kids

[Monique]

Hi all, I really need your advice and help. Jameson is starting Kindy on Weds in a regular class with an aid. The first day of school they said to bring your favorite toy and they will go in front of the class and tell them about it.

I remember someone said a long time ago they read something to the kids in the kindy class to help them understand what DS is.

I thought I could right up something the aid could read when it was jameson's time to go up (he doesnt talk).

Can anyone tell me what you would say? how much do say about the DS . what is the best way to say it to the kids. Any advice on what I could write to help his class understand him would be appreciated.

Thanks so much you all.

Monique

[Emilysmom]

Monique~
We have done this several times with Emily; although we always had the teacher read the book or talk about it at a time when Emily was not in the classroom. (Like when she was gone to PT, etc) It seemed that doing it that way made the kids feel more free to ask specific questions about Down syndrome. The one thing we made sure to tell the kids was that Emily UNDERSTOOD what was being said, but had trouble talking...............to make sure they knew that if anyone made fun of her it would hurt; just like it would hurt them if that happened to them. The kids always responded well, and it seemed to make a difference for them to know that she needed their help.
We used the book "My Sister is Special", but I'm sure there are other ones out there that explain very well about Ds. This one is done on a pre-kindy level and very easy to understand.

Susan

[Cathy]

Monique,

I have given everyone of Emily's and Katies teachers the book "My Sister is Special" to read. And it has helped the kids to understand Katie. I started this in pre-k with Em and everyone including parents were happy that I did.

Good luck,

Cathy

[pattymm]

Hi Monique,
The DSA has a wonderful poster that you can have the teacher explain to the kiddos. Also, if you have a Exceptional Family Resourse Center, they might be able to help.
Our school does a whole week of disability awareness. They put the typical kids through all kinds of work shops to help them understand. I told Kaila's teacher that they needed to address the staring issue. So rude! It really makes Kaila mad as heck.
Anyways, good luch to you,
take care,
Patty (Kaila's mom age 6)

[Jodi]

Hey Monique~

We used the book "We'll paint the octopus red". I had a lot of kids ask why Ryan did things differently. One even said "he doesn't talk". I tried to explain in a simple way that, yes, Ryan did some things different than they did, but he also did some things the same. All of the kids were great with Ryan - he had a couple of real close friends who just loved him so much!

Could I suggest something? I would still have him go up during his share time and share a toy. Have an aide explain that Jamison isn't able to make the right sounds to talk yet, but that he loves to play with toys and have her show the kids one of the toys. Tell her about how he likes to play with the toy and what he does. She will be like an interpreter for him. I would do the DS talk at a different time - a special time set aside just for that. I think it would be a good idea to keep the share time for that purpose, but it's really up to you.

If Jamison uses signs, I would encourage the teacher and kids to use signs too. By the end of the school year last year, the kids were signing a lot, and they enjoyed doing it - seems like it helped them connect with Ryan.

Good luck!

Jodi

[MB]

We made a presentation to the kids and a separate one to the parents at back to school night.

We developed "A Parent's Guide to My Son" for the parents. We thought of every question a kindergartner might ask about our son and answered it for the parents. The last question was open-ended and the answer was our phone number. I also talked to the parents about inviting my son to birthday parties and play dates. I told them my husband or I would attend and help with the party. Playdates should not scare anyone because I was willing to bring my own diet coke and sit in the kitchen if all was going well. Playdates should only last about 45 minutes.

I assured the parents that the curriculum was not going to be changed or slowed down for my son. If necessary a separate curriculum would be developed for my son to do while the other kids were doing regular kindergarten work.

Parents were also told that I was supporting inclusion until it became intrusion. Behavior that was so distracting that other students couldn't learn was a signal, for me, that my son was in the wrong place and I would be racing the parents to the principal's office demanding a change. No one ever complained!

I explained the difference between acommodating a disability and awarding special priviledges because of the challenges he faced. Having him sit next to the teacher in circle so he can hear out of his better ear is acommodating a hearing loss. Making him line leader because he likes to be line leader is obnoxious. I asked the teachers and parents to cut obnoxious off at the knees!

Even kindergartners readily know the difference!

I did a presentation for the kids with my son out of the room. The kids had already had a chance to discuss Down syndrome with the parents. We talked about Down syndrome and what it does to my son. Then came the demonstration. Two of the kids had to put pantyhose over their eyes, men's workgloves on their hands, cotton in their ears with a stocking cap and fill their mouths with Cheerios. I then quietly explained a worksheet to them from the front of the room and had them try to complete it.

They couldn't see or hear or ask intelligible questions. After they were finished we compared their worksheets to one of my son's. They looked exactly the same! When the kids realized how hard my son worked just to get through a day, he became a god! It has been incredible how much respect they have had for him all these years.

Hope this helps!

mb

[Monique]

Oh my gawd! you are awesome MB. I dont know if I would have ever thought to do all that!
I am definately going to try some of those things. Could you email me with some of the questions you thought the kids would ask? or post them. They are having a meet the teacher night on September 22. Maybe I can say something then. This is so new to me as I am used to him being in a school that is made for integration. I am still learning how to answer and approach his Down Syndrome to "laymen". I really want to do the right thing and I love your approach. Thanks so much for your post!!

Monique

[MB]

Monique,

I am doing this from memory! My son is 14 now so I will forget something.

I made it clear to the parents that some of these questions may be offensive to them. I wanted them to be prepared to answer these questions rather than chastise a 5-year-old for asking. I did not want my son to be someone the kids avoided because they could get into trouble for making inquiries about him.

Some of these questions may be offensive to you and others here at UnoMas. I apologize in advance, but "The Guide" did work. My son still enjoys a very active social life and we have made many dear friends over the years.

I have changed my son's name to protect his privacy and keep a promise to my husband regarding privacy and the internet.

A Parent's Guide to Jimmy Gilhouly

Why does Jimmy look funny?

Jimmy was born with Down syndrome. Down syndrome happens while the baby is still in the mom's stomach. Kids like Jimmy have almond shaped eyes, a flat nose, are sometimes short and have a flap in their ears. Jimmy's muscles did not form like yours so his feet flop around when he runs.

Why does Jimmy talk funny?

Move your tongue from side to side. Jimmy can't do that. The muscles in his mouth didn't form correctly because of the Down syndrome. So, he has to work very hard to even talk funny. You can help him by asking him to say it again. You can also learn his signs and sign back to him. He would like that.

I don't like Jimmy, he bugs me!

What don't you like about Jimmy? "He takes my toys." Jimmy has a hard time talking. It is easier for him to take your toy rather than form the words or use his signs to ask your permission. You should not let him take your toys. Tell Jimmy he can play with them when you are finished. If that doesn't work, ask the teacher for help. She will help Jimmy understand taking turns. You are not being mean, you are helping Jimmy learn how to play with other kids. That is something he needs to learn for the rest of his life.

Why is Jimmy so stupid?

Jimmy is not stupid. Jimmy started out in his mom's stomach just like you and I. The Down syndrome kept his brain from growing the right way. Jimmy works very hard to remember things like colors and shapes. He tries very hard to follow the directions. He has to work much harder than you or I to do the same work. This is why Jimmy is sometimes tired during class.

Why does Jimmy have his own teacher?

A special teacher called a "para" helps Jimmy. Because Jimmy has a hard time hearing, seeing and speaking because of the Down syndrome, the para will tell Jimmy the directions if he is confused and help him with his work in other ways.

Why does Jimmy leave the class all the time. Is he in trouble?

No, Jimmy is not in trouble. Because of the Down syndrome, Jimmy goes to other classrooms for special help with talking, cutting, writing and other work. We are all proud of Jimmy for his hard work. Jimmy visits the nurse a lot so she can check for ear infections. Jimmy has had 10 ear operations so far. He is a very brave boy.

Is Jimmy a retard? (UnoMas bombshell going off here!)

No. Jimmy has Down syndrome. Calling Jimmy a "retard" is something people might say who don't know anything about Down syndrome. If you hear any kids calling Jimmy that name, you can tell a teacher or busdriver or cafeteria lady or your parents. We all will help explain Down syndrome to those kids.

I want to go to Jimmy's to play. How do I ask him?

I will call Jimmy's mother. She says she loves to have kids over to play and she will also bring Jimmy over here if you want him to play.

Why does Jimmy..............?

I don't know. Let's call the Gilhoulys and ask them. Then I inserted our phone number.

You will notice I blamed all of Jimmy's woes on the Down syndrome. I wanted the parents and kids to separate Jimmy from the syndrome.

In fourth grade a mother called me to report the following conversation with her two sons.

Billy: I have a new girl in my kindergarten class. I think there is something wrong with her. I think she has the same thing Jimmy Gilhouly has.

Mom: Down syndrome?

Billy: Yes.

Older brother: Oh, Jimmy doesn't have that anymore. He grew out of it last year.

"Last year" was third grade when his speech was understandable to all of his classmates and his behavior became acceptable - obvioulsy acceptable to his peers.

Much good luck. This should be a jumping off place for your own ideas.

mb

[Monique]

thank you all for your suggestions. It is day 2 of jameson's first week in a regular kindy class with an aide. there are 25 kids in his class, 4 have special needs (none as much as jameson, apparently "special needs" now means any need at all, even if its just a stutter). They say he is doing well. But i havent gotten much detail on what he is really doing all day. But i am just letting him get adjusted to this whole new thing and then I'll start asking if he is doing anything all day besides "playing blocks" (which is what they wrote in his notebook both days).

Thanks all. I'll keep you posted.
monique

[momofrussell]

Yes, keep us posted.. and I did PM you the little letter we did for Russell's kids in his class.


A.

[Deborah]

MB that is great! Thanks for the post. No offense taken here. Those are the questions kids ask and sometimes parents do not have the answers. I know I wouldn't have known what to say to my boys years ago if they asked me any questions. I feel if it is addressed right away with the parents most of the awkard feelings are gone.
Thanks again and here again is a great post for me to store in my "have to have" pile!!!

Deborah

[Alice]

Monique,

Time really flies, I can believe that Jomeson is in kindergarten! WOW.
Wishing him every success and fun at school!
Please keep us posted.

Alice.
(Luke should be in Kindy this year too, but we decided to keep him an extra year at special need preschool - that was his teachers' suggestion).

[steffipoo]

HI!!!! MB gave me the best advice as well... What I did was write a letter to the parents and it was sent home on the first day of class as well as this..... Simple answers to kids not so simple questions about Down's syndrome...

SIMPLE ANSWERS TO KID'S (not-so-simple)
QUESTIONS ABOUT DOWN SYNDROME


WHY DO I NEED THIS INFORMATION?

This is an exciting time. Society is beginning to realize that most
children
with Down Syndrome learn better when taught alongside typically
developing
kids. Including children with disabilities in regular education, with
appropriate
classroom supports, enriches the learning experience for ALL children.
Kids
have questions, and parents have questions. For parents, "those" kids
weren't
in our classes when we went to school, so we don't have much
information about
their unique gifts and challenges.


WHAT IS DOWN SYNDROME?

Down Syndrome is something that cause differences in the way a person
looks
and learns. No two people with Down Syndrome are quite the same, but
they are
often flexible in their joints, have eyes that slant, have small ears
and a
small nose, and grow more slowly than other kids do. People with Down
Syndrome
also tend to learn more slowly than others.

WHY DO SOME PEOPLE HAVE DOWN SYNDROME?

People with Down Syndrome are born with one extra chromosome in some or
all
of their cells. Chromosomes contain the directions that tell your body
how to
grow. These directions tell your body what color your eyes and hair
will be,
how big your nose will be, whether you will be a good singer, and many
other
things. When a person has an extra chromosome, it mixes up their body's
directions a little. That is why people with Down Syndrome look a
little different and
have to try harder to learn. Nobody knows why some babies are born with
Down
Syndrome, but we do know that it is nobody's fault.

WHY IS IT CALLED DOWN SYNDROME?

A doctor named John Langdon Down was the first to write about this
condition.
It's not called that because we should be "down" or depressed about it.

WILL DOWN SYNDROME GO AWAY?

No. Down Syndrome is not a sickness. Most people with Down Syndrome are
very
healthy, although nearly fifty percent are born with heart defects,
most of
which are corrected by surgery. You cannot "catch" Down Syndrome. The
only way
to get Down Syndrome is to be born with it.

WHY CAN'T MY FRIEND WITH DOWN SYNDROME TALK VERY WELL?

Many people with Down Syndrome have trouble learning to talk. Many
little
kids first learn to communicate by using sign language. Kids with Down
Syndrome
also benefit having a teacher help them to talk (a speech and language
pathologist), but the best teachers are other kids. If you do know a
person with Down
Syndrome and you don't understand them, ask them to repeat themselves
or to
show you what they mean. Just because a person with Down Syndrome
doesn't talk
to you doesn't mean they don't want to be your friend. They may just
need extra
time and help.

CAN PEOPLE WITH DOWN SYNDROME LEARN?

Yes! People with Down Syndrome can and do learn, but have to work much
harder
than others, and may need more time and extra help. Kids with Down
Syndrome
can participate in all school activities, even though they may not
learn
everything.

DO PEOPLE WITH DOWN SYNDROME GROW UP?

Yes, In adulthood, many people with Down Syndrome have jobs, go to
college,
live independently, and support their communities. People with Down
Syndrome
bring to their jobs enthusiasm, reliability, and dedication.

DO PEOPLE WITH DOWN SYNDROME HAVE FEELINGS?

Yes, Just like everyone, people with Down Syndrome have feelings. They
can
feel happy, silly, sad, sorry, or upset-just like you. People with Down
Syndrome
enjoy friends and family and can be hurt when someone teases or makes
fun of
them -- just like you.

WHY DOES MY FRIEND WITH DOWN SYNDROME ACT DIFFERENTLY THAN OTHER KIDS?

People with Down Syndrome have difficulty with language and talking.
Many
kids want to interact and play with their friends, but don't know how,
are afraid
they won't be understood, or afraid they will be told "no, you can't
play."
Some kids with Down Syndrome get overwhelmed when too many things are
going on
at the same time.

CAN I HELP MY FRIEND?

Yes! Play with and talk to people with Down Syndrome. If they are
having
trouble playing a game, give them time and extra help, or ask them what
game they
want to play. Be clear in what you are saying. Find out what your
friend likes
to do. Just hang out together and see what happens. You are more alike
than
you are different.

Copyright 1999 by UPS for Downs

If you want to see a copy of the letter I wrote to the parents I'd happily send it to you.I gt a few lines from MB cause she really knows how to write....

((HUGS)))

Steff

[Alice]

Steff,
Could you please public the letter to parents. Luke is going to regular school next year and I am sure we will need that. Thanks!

[steffipoo]

Alice I sent it to you on the personal messages on the top of the bulletin board...

hugs
steff