Re: Resource room as punishment

[Guest guest]

Thank you for

posting this !

My son is 3 ½ mos

old and I’ve never thought about telling him that he has MDS until I read

this. I guess I’m still adjusting to his DX b/c we did not know until

after he was born that he has DS. I would like to hear from any of you, if/how you

told your child that he/she has DS and if so at what age. If you didn’t,

then what is the reasoning? Also, I have a 12 year old step-daughter of whom we

have not told about her brother’s DX. How did you tell your other

children that they have a sibling with DS?

Thanks!

Gwyn

Mommy to Mark 3

mos old

Austin, TX

From:

Down Syndrome Treatment [mailto:Down Syndrome Treatment ]

On Behalf Of T

Sent: Wednesday, September 06,

2006 10:15 AM

To:

Down Syndrome Treatment

Subject:

Resource room as punishment

,

Your comment about use of a resource room as punishment

brought back some serious memory. Eleanor never really knew she had a

disability until 4th grade when she went to a school with a self-contained

classroom. With help, she wrote the following article. It is more eloquent than

we parents can hope to be.

T.

Mouth Magazine:

Voice of the Disability Nation

Topeka, Kansas

March 2000

Eleanor Helps Herself

Eleanor

Portland, Oregon

I

am eleven years old and in fourth grade. This year some

little girls came to my school. I heard some people say that they had Down

syndrome. On a Saturday I asked my Mom, “Do I have Down syndrome?”

Mom said that I do.

I went up to my bedroom and closed the door. I didn’t cry but I shut the

door and was mad and upset. I didn’t want to have Down syndrome.

On Monday I went to school and I told my teacher, Mrs. Karr, that I had an

announcement to make. She gave me the microphone and I said: “I have two

things to say. First, I have Down syndrome and second, I am really scared that

none of you will like me anymore.”

My friends were really nice. They said they already knew that and that they

still liked me. Some of them cried. I got lots of hugs.

But

I am still not happy!

On

Wednesday my Dad and I got on an airplane and went to Chicago. On the airplane I

listened to my Walk Man. I have a song that goes “Clang, clang, rattle,

bing, bang. I make my noise all day.” I thought that is what I can do.

Even with Down syndrome I can still make my noise.

We went to the TASH meeting. There were lots of really cool people there. We

stayed in a big hotel. In our room there were two bathrooms. One had a shower

and one had a bathtub. I made a sign that said “Girls” and put it

on the door of the one with the bathtub. I didn’t want my Dad to come in.

I

took lots of baths. I thought if I took enough baths I could

wash my Down syndrome away. I also thought I would put hairspray on it but my

Mom and Dad won’t let me have hairspray. I tried to put sunscreen on it

because I thought that maybe then I wouldn’t have to have it all the

time. But my Dad said that none of that would work.

I

have friends that were at TASH. My really special friend is

Tia Nelis. She lives in Illinois.

Tia has a disability but when Tia talk’s people listen. They really

listen. Tia is a leader and she really likes me. I told Tia that I have Down

syndrome. I was surprised when she said that she had always known that. She

said she didn’t care. She said that I am an important person and that

Down syndrome is not as important as being a wonderful person. When I grow up I

want to be just like Tia.

I have other friends at TASH who told me the same thing. I meant a really nice

person named . goes to college. has Down syndrome. I also

talked to my other friend Liz Obermayer. Liz has a new job and is moving to land which is a

state. Liz has a disability but she is a leader too. She is on the Board of

TASH. Liz goes to lots of meetings and people listen to her too.

I got my name from Eleanor Roosevelt. Lots of bad things happened in her life.

I have read all about her. She was a leader. I also know about Parks,

Luther King, Mandela and Kennedy. Lots of bad things

happened to them but they were strong and were leaders. My Dad says they made

people proud of whom they are and made them free.

I

wish I didn’t have Down syndrome, but I do and I am a

person with lots of plans.

When I wonder what to do I will remember my song. I will do what it says. I

will go

‘Clang,

rattle, bing, bang and make my noise all day.’ Even though I am sad I know

I can be as tough as anyone. That is what I want to do.

Just be me.

Used with permission of Mouth Magazine.

Subscriptions to Mouth Magazine: Voice of the Disability Nation

are available.

Mouth Magazine

PO Box 558

Topeka, KS. 66601-0558

www.mouthmag.org

[Guest guest]

Hi Gwyn,

I am in the same boat as you. I found out at 6 mos. that my son was DS. It was awhile before I could tell my other kids....I had taken time to let it all sink in and learn all I could...just enough to know that the diagnosis didn't tell me anything about what we were to face. We told the other kids with an upbeat attitude and that we didn't really know what it meant for him yet, but that we would all we could for him (just like them) and tackle each issue as it arises. they were wonderful and more concerned about him and how others were going to treat him. They were and are wonderful! And he is wonderful too....so far, no medical issues and he's pretty much right on with his milestones at 9 mos. He's a joy and has brought our (blended) family so much closer together. Good luck and God bless.

Eagle Acres RanchCraig Weaver and 308 Twin Lakes Rd.Winthrop, WA 98862(509) 996-7807

RE: Resource room as punishment

Thank you for posting this !

My son is 3 ½ mos old and I’ve never thought about telling him that he has MDS until I read this. I guess I’m still adjusting to his DX b/c we did not know until after he was born that he has DS. I would like to hear from any of you, if/how you told your child that he/she has DS and if so at what age. If you didn’t, then what is the reasoning? Also, I have a 12 year old step-daughter of whom we have not told about her brother’s DX. How did you tell your other children that they have a sibling with DS?

Thanks!

Gwyn

Mommy to Mark 3 mos old

Austin, TX

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of T Sent: Wednesday, September 06, 2006 10:15 AMDown Syndrome Treatment Subject: Resource room as punishment

,

Your comment about use of a resource room as punishment brought back some serious memory. Eleanor never really knew she had a disability until 4th grade when she went to a school with a self-contained classroom. With help, she wrote the following article. It is more eloquent than we parents can hope to be.

T.

Mouth Magazine:

Voice of the Disability Nation

Topeka, Kansas

March 2000

Eleanor Helps Herself

Eleanor

Portland, Oregon

I am eleven years old and in fourth grade. This year some little girls came to my school. I heard some people say that they had Down syndrome. On a Saturday I asked my Mom, “Do I have Down syndrome?” Mom said that I do.

I went up to my bedroom and closed the door. I didn’t cry but I shut the door and was mad and upset. I didn’t want to have Down syndrome.

On Monday I went to school and I told my teacher, Mrs. Karr, that I had an announcement to make. She gave me the microphone and I said: “I have two things to say. First, I have Down syndrome and second, I am really scared that none of you will like me anymore.”

My friends were really nice. They said they already knew that and that they still liked me. Some of them cried. I got lots of hugs.

But I am still not happy!

On Wednesday my Dad and I got on an airplane and went to Chicago. On the airplane I listened to my Walk Man. I have a song that goes “Clang, clang, rattle, bing, bang. I make my noise all day.” I thought that is what I can do. Even with Down syndrome I can still make my noise.

We went to the TASH meeting. There were lots of really cool people there. We stayed in a big hotel. In our room there were two bathrooms. One had a shower and one had a bathtub. I made a sign that said “Girls” and put it on the door of the one with the bathtub. I didn’t want my Dad to come in.

I took lots of baths. I thought if I took enough baths I could wash my Down syndrome away. I also thought I would put hairspray on it but my Mom and Dad won’t let me have hairspray. I tried to put sunscreen on it because I thought that maybe then I wouldn’t have to have it all the time. But my Dad said that none of that would work.

I have friends that were at TASH. My really special friend is Tia Nelis. She lives in Illinois. Tia has a disability but when Tia talk’s people listen. They really listen. Tia is a leader and she really likes me. I told Tia that I have Down syndrome. I was surprised when she said that she had always known that. She said she didn’t care. She said that I am an important person and that Down syndrome is not as important as being a wonderful person. When I grow up I want to be just like Tia.

I have other friends at TASH who told me the same thing. I meant a really nice person named . goes to college. has Down syndrome. I also talked to my other friend Liz Obermayer. Liz has a new job and is moving to land which is a state. Liz has a disability but she is a leader too. She is on the Board of TASH. Liz goes to lots of meetings and people listen to her too.

I got my name from Eleanor Roosevelt. Lots of bad things happened in her life. I have read all about her. She was a leader. I also know about Parks, Luther King, Mandela and Kennedy. Lots of bad things happened to them but they were strong and were leaders. My Dad says they made people proud of whom they are and made them free.

I wish I didn’t have Down syndrome, but I do and I am a person with lots of plans.

When I wonder what to do I will remember my song. I will do what it says. I will go

‘Clang, rattle, bing, bang and make my noise all day.’ Even though I am sad I know I can be as tough as anyone. That is what I want to do.

Just be me.

Used with permission of Mouth Magazine.

Subscriptions to Mouth Magazine: Voice of the Disability Nation

are available.

Mouth Magazine

PO Box 558

Topeka, KS. 66601-0558

www.mouthmag.org

[Guest guest]

wonderful article!!!

=====================

From: T <mtbclarion@...>

Date: 2006/09/06 Wed AM 10:14:30 CDT

Down Syndrome Treatment

Subject: Resource room as punishment

, Your comment about use of a resource room as punishment brought back some

serious memory. Eleanor never really knew she had a disability until 4th grade

when she went to a school with a self-contained classroom. With help, she wrote

the following article. It is more eloquent than we parents can hope to

be. T.

Mouth Magazine:

Voice of the Disability Nation

Topeka, Kansas

March 2000

 

 

Eleanor Helps Herself

Eleanor

Portland, Oregon

 

 

            I am eleven years old and in fourth grade. This year some little

girls came to my school. I heard some people say that they had Down syndrome. On

a Saturday I asked my Mom, “Do I have Down syndrome?” Mom said that I do.

            I went up to my bedroom and closed the door. I didn’t cry but I shut

the door and was mad and upset. I didn’t want to have Down syndrome.

            On Monday I went to school and I told my teacher, Mrs. Karr, that I

had an announcement to make. She gave me the microphone and I said: “I have two

things to say. First, I have Down syndrome and second, I am really scared that

none of you will like me anymore.”

            My friends were really nice. They said they already knew that and

that they still liked me. Some of them cried. I got lots of hugs.

 

            But I am still not happy!

 

            On Wednesday my Dad and I got on an airplane and went to Chicago. On

the airplane I listened to my Walk Man. I have a song that goes “Clang, clang,

rattle, bing, bang. I make my noise all day.” I thought that is what I can do.

Even with Down syndrome I can still make my noise.

            We went to the TASH meeting. There were lots of really cool people

there. We stayed in a big hotel. In our room there were two bathrooms. One had a

shower and one had a bathtub. I made a sign that said “Girls” and put it on the

door of the one with the bathtub. I didn’t want my Dad to come in.

 

            I took lots of baths. I thought if I took enough baths I could wash

my Down syndrome away. I also thought I would put hairspray on it but my Mom and

Dad won’t let me have hairspray. I tried to put sunscreen on it because I

thought that maybe then I wouldn’t have to have it all the time. But my Dad said

that none of that would work.

 

            I have friends that were at TASH. My really special friend is Tia

Nelis. She lives in Illinois. Tia has a disability but when Tia talk’s people

listen. They really listen. Tia is a leader and she really likes me. I told Tia

that I have Down syndrome. I was surprised when she said that she had always

known that. She said she didn’t care. She said that I am an important person and

that Down syndrome is not as important as being a wonderful person. When I grow

up I want to be just like Tia.

            I have other friends at TASH who told me the same thing. I meant a

really nice person named . goes to college. has Down syndrome.

I also talked to my other friend Liz Obermayer. Liz has a new job and is moving

to land which is a state. Liz has a disability but she is a leader too. She

is on the Board of TASH. Liz goes to lots of meetings and people listen to her

too.

            I got my name from Eleanor Roosevelt. Lots of bad things happened in

her life. I have read all about her. She was a leader. I also know about

Parks, Luther King, Mandela and Kennedy. Lots of bad things

happened to them but they were strong and were leaders. My Dad says they made

people proud of whom they are and made them free.

 

            I wish I didn’t have Down syndrome, but I do and I am a person with

lots of plans.

            When I wonder what to do I will remember my song. I will do what it

says. I will go

‘Clang, rattle, bing, bang and make my noise all day.’ Even though I am sad I

know I can be as tough as anyone. That is what I want to do.

            Just be me.

 

 

Used with permission of Mouth Magazine.

Subscriptions to Mouth Magazine: Voice of the Disability Nation

are available.

Mouth Magazine

PO Box 558

Topeka, KS. 66601-0558

www.mouthmag.org

 

[Guest guest]

I let my older three girls name the sister that would be born with DS. They understood she would need a lot of help from them. I picked the middle name of Grace and they compromised on the first name of Larissa.

I doubt Larissa really understands that she has Down syndrome.

Mindy

RE: Resource room as punishment

Thank you for posting this !

My son is 3 ½ mos old and I’ve never thought about telling him that he has MDS until I read this. I guess I’m still adjusting to his DX b/c we did not know until after he was born that he has DS. I would like to hear from any of you, if/how you told your child that he/she has DS and if so at what age. If you didn’t, then what is the reasoning? Also, I have a 12 year old step-daughter of whom we have not told about her brother’s DX. How did you tell your other children that they have a sibling with DS?

Thanks!

Gwyn

Mommy to Mark 3 mos old

Austin, TX

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of T Sent: Wednesday, September 06, 2006 10:15 AMDown Syndrome Treatment Subject: Resource room as punishment

,

Your comment about use of a resource room as punishment brought back some serious memory. Eleanor never really knew she had a disability until 4th grade when she went to a school with a self-contained classroom. With help, she wrote the following article. It is more eloquent than we parents can hope to be.

T.

Mouth Magazine:

Voice of the Disability Nation

Topeka, Kansas

March 2000

Eleanor Helps Herself

Eleanor

Portland, Oregon

I am eleven years old and in fourth grade. This year some little girls came to my school. I heard some people say that they had Down syndrome. On a Saturday I asked my Mom, “Do I have Down syndrome?” Mom said that I do.

I went up to my bedroom and closed the door. I didn’t cry but I shut the door and was mad and upset. I didn’t want to have Down syndrome.

On Monday I went to school and I told my teacher, Mrs. Karr, that I had an announcement to make. She gave me the microphone and I said: “I have two things to say. First, I have Down syndrome and second, I am really scared that none of you will like me anymore.”

My friends were really nice. They said they already knew that and that they still liked me. Some of them cried. I got lots of hugs.

But I am still not happy!

On Wednesday my Dad and I got on an airplane and went to Chicago. On the airplane I listened to my Walk Man. I have a song that goes “Clang, clang, rattle, bing, bang. I make my noise all day.” I thought that is what I can do. Even with Down syndrome I can still make my noise.

We went to the TASH meeting. There were lots of really cool people there. We stayed in a big hotel. In our room there were two bathrooms. One had a shower and one had a bathtub. I made a sign that said “Girls” and put it on the door of the one with the bathtub. I didn’t want my Dad to come in.

I took lots of baths. I thought if I took enough baths I could wash my Down syndrome away. I also thought I would put hairspray on it but my Mom and Dad won’t let me have hairspray. I tried to put sunscreen on it because I thought that maybe then I wouldn’t have to have it all the time. But my Dad said that none of that would work.

I have friends that were at TASH. My really special friend is Tia Nelis. She lives in Illinois. Tia has a disability but when Tia talk’s people listen. They really listen. Tia is a leader and she really likes me. I told Tia that I have Down syndrome. I was surprised when she said that she had always known that. She said she didn’t care. She said that I am an important person and that Down syndrome is not as important as being a wonderful person. When I grow up I want to be just like Tia.

I have other friends at TASH who told me the same thing. I meant a really nice person named . goes to college. has Down syndrome. I also talked to my other friend Liz Obermayer. Liz has a new job and is moving to land which is a state. Liz has a disability but she is a leader too. She is on the Board of TASH. Liz goes to lots of meetings and people listen to her too.

I got my name from Eleanor Roosevelt. Lots of bad things happened in her life. I have read all about her. She was a leader. I also know about Parks, Luther King, Mandela and Kennedy. Lots of bad things happened to them but they were strong and were leaders. My Dad says they made people proud of whom they are and made them free.

I wish I didn’t have Down syndrome, but I do and I am a person with lots of plans.

When I wonder what to do I will remember my song. I will do what it says. I will go

‘Clang, rattle, bing, bang and make my noise all day.’ Even though I am sad I know I can be as tough as anyone. That is what I want to do.

Just be me.

Used with permission of Mouth Magazine.

Subscriptions to Mouth Magazine: Voice of the Disability Nation

are available.

Mouth Magazine

PO Box 558

Topeka, KS. 66601-0558

www.mouthmag.org

[Guest guest]

Gwyn My story is unique.(So unique that we were on NPR This American Life and now I am writing a book!) I didn't tell Tim he had MDS until he was 14 years old. I didn't tell teachers and I didn't tell most friends. I found that when the teachers knew about Tim's diagnosis, they treated him differently and didn't give him the chance to succeed. They didn't expect his very best and made excuses for him. The years that they didn't know, he excelled in every way! We didn't tell Tim because in 2nd grade he complained that he couldn't finish an assignment because he had ADHD. I thought what he would do if he knew he had extra chromsomes! So, we didn't tell him. After we did tell him, he agreed that if he had known earlier in life, he would have used it as a crutch to get out of doing his best. Throughout Tim's childhood, we treated him like a typical child. We didn't put limits on him and we expected him to do everything that

his brothers did. I know that sometimes you can not keep a diagnosis a secret. Especially when the person has Down syndrome and the physical characteristics are present. In our case, Tim did not have the physical characteristics, so it made it easier to keep it a secret. Some may think that we did this because we were ashamed of our son's diagnosis. Please know that that was not the case what so ever! We just realized that every time someone knew about his MDS they treated him totally different, and we wanted him to succeed! Incidently, he is now making college plans for the Spring. His goal is to be a computer graphic designer! Kristy

[Guest guest]

Hi, Kristy,

you said Tim did not have the physical characteristics, and i find it hard to picture him as a normal looking kid with no slant eyes... could you please post your son picture so that i could see the difference, please?

yes, my son has some physical characteristics, but if i were to compare him with another one, his presents weak ones. So, im a little confused how your son could be with out any physical characteristics...

congrats for your son making plans for the college! that is an inspiring moment!

thank you... kathleen

-- Re: Resource room as punishment

Gwyn

My story is unique.(So unique that we were on NPR This American Life and now I am writing a book!)

I didn't tell Tim he had MDS until he was 14 years old. I didn't tell teachers and I didn't tell most friends. I found that when the teachers knew about Tim's diagnosis, they treated him differently and didn't give him the chance to succeed. They didn't expect his very best and made excuses for him. The years that they didn't know, he excelled in every way! We didn't tell Tim because in 2nd grade he complained that he couldn't finish an assignment because he had ADHD. I thought what he would do if he knew he had extra chromsomes! So, we didn't tell him. After we did tell him, he agreed that if he had known earlier in life, he would have used it as a crutch to get out of doing his best.

Throughout Tim's childhood, we treated him like a typical child. We didn't put limits on him and we expected him to do everything that his brothers did. I know that sometimes you can not keep a diagnosis a secret. Especially when the person has Down syndrome and the physical characteristics are present. In our case, Tim did not have the physical characteristics, so it made it easier to keep it a secret. Some may think that we did this because we were ashamed of our son's diagnosis. Please know that that was not the case what so ever! We just realized that every time someone knew about his MDS they treated him totally different, and we wanted him to succeed!

Incidently, he is now making college plans for the Spring. His goal is to be a computer graphic designer!

Kristy

[Guest guest]

Yeah I wish we could do that too, but

Phoebe is almost two and still does not crawl or attempt to stand. She only

has two baby teeth that came in recently on the bottom. Don’t get me

wrong, she is a beautiful baby and everyone is drawn to her but, it is more

than obvious that something is wrong. How I wish we could pretend everything

is normal.

Borkowski Mom to Phoebe 2 w/cf & Ds, Nolan 4

click here to join Phoebe's Phight:

www.active.com/donate/buddywalk2006/phight4phoebe

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of ktripp99@...

Sent: Thursday, September 07, 2006

9:41 AM

Down Syndrome Treatment

Subject: Re:

Re: Resource room as punishment

Hi, Kristy,

you said Tim did not have the physical characteristics,

and i find it hard to picture him as a normal looking kid with no slant

eyes... could you please post your son picture so that i could see the

difference, please?

yes, my son has some physical characteristics, but if i

were to compare him with another one, his presents weak ones. So, im a

little confused how your son could be with out any physical characteristics...

congrats for your son making plans for the college! that

is an inspiring moment!

thank you... kathleen

--

Re: Resource room as punishment

Gwyn

My story is unique.(So unique that we were on NPR This

American Life and now I am writing a book!)

I didn't tell Tim he had MDS until he was 14 years

old. I didn't tell teachers and I didn't tell most friends. I found that when

the teachers knew about Tim's diagnosis, they treated him differently and

didn't give him the chance to succeed. They didn't expect his very best and

made excuses for him. The years that they didn't know, he excelled in every

way! We didn't tell Tim because in 2nd grade he complained that he couldn't

finish an assignment because he had ADHD. I thought what he would do if

he knew he had extra chromsomes! So, we didn't tell him. After we did tell

him, he agreed that if he had known earlier in life, he would have used it as

a crutch to get out of doing his best.

Throughout Tim's childhood, we treated him like a typical

child. We didn't put limits on him and we expected him to do everything that

his brothers did. I know that sometimes you can not keep a diagnosis a

secret. Especially when the person has Down syndrome and the physical

characteristics are present. In our case, Tim did not have the physical

characteristics, so it made it easier to keep it a secret. Some may think

that we did this because we were ashamed of our son's diagnosis. Please know

that that was not the case what so ever! We just realized that every time

someone knew about his MDS they treated him totally different, and we wanted

him to succeed!

Incidently, he is now making college plans for the Spring.

His goal is to be a computer graphic designer!

Kristy

[Guest guest]

,

your daughter is adorable one!! I wish I could meet your daughter, and make a friend with her, smile. I pray for you and her... whatever comes the best for this. God blesses.

kathleen

-- Re: Resource room as punishment

Gwyn

My story is unique.(So unique that we were on NPR This American Life and now I am writing a book!)

I didn't tell Tim he had MDS until he was 14 years old. I didn't tell teachers and I didn't tell most friends. I found that when the teachers knew about Tim's diagnosis, they treated him differently and didn't give him the chance to succeed. They didn't expect his very best and made excuses for him. The years that they didn't know, he excelled in every way! We didn't tell Tim because in 2nd grade he complained that he couldn't finish an assignment because he had ADHD. I thought what he would do if he knew he had extra chromsomes! So, we didn't tell him. After we did tell him, he agreed that if he had known earlier in life, he would have used it as a crutch to get out of doing his best.

Throughout Tim's childhood, we treated him like a typical child. We didn't put limits on him and we expected him to do everything that his brothers did. I know that sometimes you can not keep a diagnosis a secret. Especially when the person has Down syndrome and the physical characteristics are present. In our case, Tim did not have the physical characteristics, so it made it easier to keep it a secret. Some may think that we did this because we were ashamed of our son's diagnosis. Please know that that was not the case what so ever! We just realized that every time someone knew about his MDS they treated him totally different, and we wanted him to succeed!

Incidently, he is now making college plans for the Spring. His goal is to be a computer graphic designer!

Kristy

[Guest guest]

Thank you Kathleen, that is so sweet.

Where do you live, maybe we could meet! If not that is ok. I am so happy to

have so much support from people I have never met. The wonder of the

internet!!!!

Borkowski Mom to Phoebe 2 w/cf & Ds, Nolan 4

click here to join Phoebe's Phight:

www.active.com/donate/buddywalk2006/phight4phoebe

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of ktripp99@...

Sent: Thursday, September 07, 2006

11:51 AM

Down Syndrome Treatment

Subject: RE:

Re: Resource room as punishment

,

your daughter is adorable one!! I wish I could meet

your daughter, and make a friend with her, smile. I pray for you

and her... whatever comes the best for this. God blesses.

kathleen

--

Re: Resource room as punishment

Gwyn

My story is unique.(So unique that we were on NPR This American Life

and now I am writing a book!)

I didn't tell Tim he had MDS until he was 14 years old. I

didn't tell teachers and I didn't tell most friends. I found that when the

teachers knew about Tim's diagnosis, they treated him differently and

didn't give him the chance to succeed. They didn't expect his very best and

made excuses for him. The years that they didn't know, he excelled in every

way! We didn't tell Tim because in 2nd grade he complained that he couldn't

finish an assignment because he had ADHD. I thought what he would do

if he knew he had extra chromsomes! So, we didn't tell him. After we did

tell him, he agreed that if he had known earlier in life, he would have

used it as a crutch to get out of doing his best.

Throughout Tim's childhood, we treated him like a typical child. We

didn't put limits on him and we expected him to do everything that his

brothers did. I know that sometimes you can not keep a diagnosis a secret.

Especially when the person has Down syndrome and the physical

characteristics are present. In our case, Tim did not have the physical

characteristics, so it made it easier to keep it a secret. Some may think

that we did this because we were ashamed of our son's diagnosis. Please

know that that was not the case what so ever! We just realized that every

time someone knew about his MDS they treated him totally different, and we

wanted him to succeed!

Incidently, he is now making college plans for the Spring. His goal

is to be a computer graphic designer!

Kristy

[Guest guest]

I understand your frustration! Tim was delayed in walking and speech

and there were days that I didn't think it would ever happen!

Normal is what you make it. What one family defines as " normal "

another family make think is very abnormal.

As Tim grew, I didn't think about his dx all of the time. I saw Tim

for just Tim. We didn't pretend that it wasn't there, its just that

we didn't have it in the forefront of our minds.

I can tell you this...I have 5 sons. Out of all 5, Tim was the

easiest to raise through the teenage years! HE was our " normal " one!

lol He didn't go off and do all the crazy things his brothers tried.

Phoebe will walk in her own time, and then as years pass, you will

have to think back to remember the frustrations of her not walking.

lol

Kristy

>

> DownSyndromeInfoExc

<mailto:Down Syndrome Treatment >

> hange

>

> Subject: RE: Re: Resource room as

punishment

>

> Yeah I wish we could do that too, but Phoebe is almost two and

still does

> not crawl or attempt to stand. She only has two baby teeth that

came in

> recently on the bottom. Don't get me wrong, she is a beautiful

baby and

> everyone is drawn to her but, it is more than obvious that

something is

> wrong. How I wish we could pretend everything is normal.

>

>

>

> Borkowski Mom to Phoebe 2 w/cf & Ds, Nolan 4

>

> click here to join Phoebe's Phight:

> <http://www.active.com/donate/buddywalk2006/phight4phoebe>

> www.active.com/donate/buddywalk2006/phight4phoebe

>

>

>

> _____

[Guest guest]

Thank you for the encouragement. I have

to admit (although you figured it out!) I am getting frustrated. I am not mad

a Phoebe; she is the light of my life. I just want things to move faster. I

try not to say anything to other people about her diagnosis, but when we are

out in public she does attract attention because she is so social and smiles

and coos to most strangers. Then they ask how old she is and the whispers and

strange looks start (why can’t she walk, where are her teeth etc).

I used to be able to get away with saying

she was 8, 9, 0r 10 months old but now she is bigger and has long hair that a

baby would never have. So I try to stay out of the lime light which is

probably not healthy either.

Sorry to dump on you.

Borkowski Mom to Phoebe 2 w/cf & Ds, Nolan 4

click here to join Phoebe's Phight:

www.active.com/donate/buddywalk2006/phight4phoebe

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of Kristy Colvin

Sent: Thursday, September 07, 2006

2:02 PM

Down Syndrome Treatment

Subject:

Re: Resource room as punishment

I understand your frustration! Tim was delayed in walking and speech

and there were days that I didn't think it would ever happen!

Normal is what

you make it. What one family defines as " normal "

another family make think is very abnormal.

As Tim grew, I didn't think about his dx all of the time. I saw Tim

for just Tim. We didn't pretend that it wasn't there, its just that

we didn't have it in the forefront of our minds.

I can tell you this...I have 5 sons. Out of all 5, Tim was the

easiest to raise through the teenage years! HE was our " normal " one!

lol He didn't go off and do all the crazy things his brothers tried.

Phoebe will walk in her own time, and then as years pass, you will

have to think back to remember the frustrations of her not walking.

lol

Kristy

>

> DownSyndromeInfoExc

<mailto:Down Syndrome Treatment >

> hange

>

> Subject: RE: Re: Resource room as

punishment

>

> Yeah I wish we could do that too, but Phoebe is almost two and

still does

> not crawl or attempt to stand. She only has two baby teeth that

came in

> recently on the bottom. Don't get me wrong, she is a beautiful

baby and

> everyone is drawn to her but, it is more than obvious that

something is

> wrong. How I wish we could pretend everything is normal.

>

>

>

> Borkowski Mom to Phoebe 2 w/cf & Ds, Nolan 4

>

> click here to join Phoebe's Phight:

> <http://www.active.com/donate/buddywalk2006/phight4phoebe>

> www.active.com/donate/buddywalk2006/phight4phoebe

>

>

>

> _____

[Guest guest]

We all have our bad days! I know I have! And, I wouldn't worry about

not telling people she has Ds. Perhaps you can educate people on Ds

and change people's lives!

Kristy

>

> Thank you for the encouragement. I have to admit (although you

figured it

> out!) I am getting frustrated. I am not mad a Phoebe; she is the

light of

> my life. I just want things to move faster. I try not to say

anything to

> other people about her diagnosis, but when we are out in public

she does

> attract attention because she is so social and smiles and coos to

most

> strangers. Then they ask how old she is and the whispers and

strange looks

> start (why can't she walk, where are her teeth etc).

>

> I used to be able to get away with saying she was 8, 9, 0r 10

months old but

> now she is bigger and has long hair that a baby would never have.

So I try

> to stay out of the lime light which is probably not healthy either.

>

>

>

> Sorry to dump on you.

>

>

>

> Borkowski Mom to Phoebe 2 w/cf & Ds, Nolan 4

>

> click here to join Phoebe's Phight:

> <http://www.active.com/donate/buddywalk2006/phight4phoebe>

> www.active.com/donate/buddywalk2006/phight4phoebe

>

>

>

> _____

>

> From: Down Syndrome Treatment

> [mailto:Down Syndrome Treatment ] On Behalf Of

Kristy Colvin

> Sent: Thursday, September 07, 2006 2:02 PM

> Down Syndrome Treatment

> Subject: Re: Resource room as punishment

>

>

>

>

> I understand your frustration! Tim was delayed in walking and

speech

> and there were days that I didn't think it would ever happen!

> Normal is what you make it. What one family defines as " normal "

> another family make think is very abnormal.

> As Tim grew, I didn't think about his dx all of the time. I saw

Tim

> for just Tim. We didn't pretend that it wasn't there, its just

that

> we didn't have it in the forefront of our minds.

> I can tell you this...I have 5 sons. Out of all 5, Tim was the

> easiest to raise through the teenage years! HE was our " normal "

one!

> lol He didn't go off and do all the crazy things his brothers

tried.

> Phoebe will walk in her own time, and then as years pass, you will

> have to think back to remember the frustrations of her not

walking.

> lol

>

> Kristy

>

> >

> > DownSyndromeInfoExc

> <mailto:DownSyndromeInfoExc

> <mailto:Down Syndrome Treatment%40>

hange >

> > hangegroups (DOT) <mailto:hange%40> com

> >

> > Subject: RE: Re: Resource room as

> punishment

> >

> > Yeah I wish we could do that too, but Phoebe is almost two and

> still does

> > not crawl or attempt to stand. She only has two baby teeth that

> came in

> > recently on the bottom. Don't get me wrong, she is a beautiful

> baby and

> > everyone is drawn to her but, it is more than obvious that

> something is

> > wrong. How I wish we could pretend everything is normal.

> >

> >

> >

> > Borkowski Mom to Phoebe 2 w/cf & Ds, Nolan 4

> >

> > click here to join Phoebe's Phight:

> > <http://www.active.

> <http://www.active.com/donate/buddywalk2006/phight4phoebe>

> com/donate/buddywalk2006/phight4phoebe>

> > www.active.com/donate/buddywalk2006/phight4phoebe

> >

> >

> >

> > _____

>