Group Question?

February 8, 2002

In a message dated 2/8/02 8:19:39 AM Central Standard Time, List@... writes:

Do you think that your child with DS would benefit more from a friendship

with another child with DS or a child without DS? Why?

O.K. Sara. Why do you have to tax my brain this early in the morning?

This is a pretty loaded question, so much depends on the children and how they were raised. I can only go by my experience with my children. They have friends with disabilities and without. The children we know with Down syndrome have not been included (or well disciplined by their parents) and have some pretty big behavior issues. They boy's best friend, who also has Down syndrome, is 9. He barely speaks, throws fits while falling on the floor, sucks his thumb, runs whenever not being held by the hand and undresses in public. This boy watches Barney videos and plays with baby toys. He is the sweetest boy I've ever met, but frankly, NOT the role model I want for my boys. We do not forbid the boys to see him, but in truth, they rarely ask to play with him. It is usually his mother who initiates visits.

On the other hand the children my son's have met in their school have been remarkable. Yes, they have picked up some "bad" habits, like being bossy and stubborn. But, you have to remember that Zack is 9, and all his nondisabled peers are going through the same things. Zack enjoys the same types toys and videos that his classmates do. He would not be caught dead watching "Barney". Zack is able to attend school functions, supervised only by his "friends" from school. They help him, watch over him and include him as much as they can. As class room mom, I made the children do a project for Valentine's Day. They each had to write one thing nice about their classmates. Here are some of the things they wrote about Zack: "my friend", "a good person", "funny", "kind", "cool", "My best friend in the whole world", "A very, very good best friend", "cute", "really nice", "Very, very awesome", etc. I was disappointed in his teacher's and his aide's responses. They both said he was "loving". Maybe I'm sensitive, but I consider that stereotypical.

So, from my experience, while I would never limit either boy from having friends with Down syndrome, so far the best friends for them have been nondisabled children. They call them on the phone, email them, invite them to parties. They help them in school, and are the best one's at keeping them on track. I am sure there are children with DS like that, but in our district, they are sent to another school. To my knowledge, Zack is the only child with DS that is included in our district. Most of the parents in our support group have very young children.

The biggest barrier my children face are other parents. Zack and Matt's classmates beg me to have them over or let the boys visit them. When I ask the parents, I am met with "Um's" and "Ah's" and they will not look me in the eye. They swear to me how much their child loves Zack or Matt, and how wonderful it is for their child to be in a class with my child, but they seem afraid to take it to a more personal level. And, I truly believe that is the problem -- fear. I'm not sure if they are afraid their child will "catch" something from my boys or what, but you can almost feel the fear radiating off them. I still haven't figured out what to do about that.

O.K. Sara. That's my answer. I hope I didn't offend anyone. As I said that is just my experience. Also, my brain is still rather mushy. I spent 5 1/2 hours yesterday being deposed about 's death. The hospital lawyer seemed intent on knowing a physical description and a fashion statement on every doctor or nurse we ever met! "When was coding, I want you to tell me the name and title of everyone who responded." I told him, I wasn't taking resumes at the door, my son was dying! "Well, can you tell me what they looked like and what they were wearing?" NO! All I saw was a sea of faces, and they had their backs to me working on . Our lawyer says that Jim and I did well, and might get an offer to settle soon, but it will probably be small, because they will say had no potential to "be anything." Our lawyer is also a nurse and said this is the worst case of negligence she's ever seen. Tell me about it!

O.K, I'm done now. My mushy brain and I have to go scrub some walls.

Sue - mom to Zack, 9, DS, 2 ASD's, VSD, bad mitral valve; Matt, 8, PFO, PDD, 's Anomaly, Cataracts, Glaucoma; , 4, DS, Asthma, G-tube (Now our angel boy 4/20/96 -- 12/31/00) "So you see, I love him, he's my son. And if my life with him is done, then finish off what you've begun. Make me wood, or stone or clay, if you take my heart away." Since I Gave My Heart Away

's Candle Shrine

http://artwells.com/oracula/anonimmus/shrine.html?shaemmusid=0111238045898

's Memorial Page

http://hometown.aol.com/zmadad/page9.html

DisLabeled Writings

http://hometown.aol.com/zmadad/page11.html UPDATED!

February 8, 2002

Hi Sue!

Wow! Thanks for your input! It's so sad that the parents stand in the way

of a perfect friendship! Sometimes adults are so silly!!

I love what the students said about Zack! Gave me some teary eyes! Awwww!

What a good idea! Keep that paper forever!!!!! And as for role models... I

think Zack and Matt are definatly role models for other kids! Every kid...

not just a kid with DS! I hope my kids have such good friends as your boys!

As for the trial .... {{{{{{{{{{{{{{{{{{{{SUE}}}}}}}}}}}}}}}}} ... you

deserve a BIG HUGE HUG and so much more! Court always sucks. I can't

imagine what you are going through! You are soooo strong! And what you are

doing will have effect on future kids. THANK YOU!

Love,

Sara

--On Friday, February 08, 2002, 12:09 PM +0000 zmadad@... wrote:

> In a message dated 2/8/02 8:19:39 AM Central Standard Time,

> List@... writes:

>

> Do you think that your child with DS would benefit more from a friendship

> with another child with DS or a child without DS? Why?

>

> O.K. Sara. Why do you have to tax my brain this early in the morning?

>

> This is a pretty loaded question, so much depends on the children and how

> they were raised. I can only go by my experience with my children. They

> have friends with disabilities and without. The children we know with

> Down syndrome have not been included (or well disciplined by their

> parents) and have some pretty big behavior issues. They boy's best

> friend, who also has Down syndrome, is 9. He barely speaks, throws fits

> while falling on the floor, sucks his thumb, runs whenever not being held

> by the hand and undresses in public. This boy watches Barney videos and

> plays with baby toys. He is the sweetest boy I've ever met, but frankly,

> NOT the role model I want for my boys. We do not forbid the boys to see

> him, but in truth, they rarely ask to play with him. It is usually his

> mother who initiates visits.

>

> On the other hand the children my son's have met in their school have

> been remarkable. Yes, they have picked up some " bad " habits, like being

> bossy and stubborn. But, you have to remember that Zack is 9, and all

> his nondisabled peers are going through the same things. Zack enjoys the

> same types toys and videos that his classmates do. He would not be

> caught dead watching " Barney " . Zack is able to attend school functions,

> supervised only by his " friends " from school. They help him, watch over

> him and include him as much as they can. As class room mom, I made the

> children do a project for Valentine's Day. They each had to write one

> thing nice about their classmates. Here are some of the things they

> wrote about Zack: " my friend " , " a good person " , " funny " , " kind " , " cool " ,

> " My best friend in the whole world " , " A very, very good best friend " ,

> " cute " , " really nice " , " Very, very awesome " , etc. I was disappointed in

> his teacher's and his aide's responses. They both said he was " loving " .

> Maybe I'm sensitive, but I consider that stereotypical.

>

> So, from my experience, while I would never limit either boy from having

> friends with Down syndrome, so far the best friends for them have been

> nondisabled children. They call them on the phone, email them, invite

> them to parties. They help them in school, and are the best one's at

> keeping them on track. I am sure there are children with DS like that,

> but in our district, they are sent to another school. To my knowledge,

> Zack is the only child with DS that is included in our district. Most of

> the parents in our support group have very young children.

>

> The biggest barrier my children face are other parents. Zack and Matt's

> classmates beg me to have them over or let the boys visit them. When I

> ask the parents, I am met with " Um's " and " Ah's " and they will not look

> me in the eye. They swear to me how much their child loves Zack or Matt,

> and how wonderful it is for their child to be in a class with my child,

> but they seem afraid to take it to a more personal level. And, I truly

> believe that is the problem -- fear. I'm not sure if they are afraid

> their child will " catch " something from my boys or what, but you can

> almost feel the fear radiating off them. I still haven't figured out

> what to do about that.

>

> O.K. Sara. That's my answer. I hope I didn't offend anyone. As I said

> that is just my experience. Also, my brain is still rather mushy. I

> spent 5 1/2 hours yesterday being deposed about 's death. The

> hospital lawyer seemed intent on knowing a physical description and a

> fashion statement on every doctor or nurse we ever met! " When was

> coding, I want you to tell me the name and title of everyone who

> responded. " I told him, I wasn't taking resumes at the door, my son was

> dying! " Well, can you tell me what they looked like and what they were

> wearing? " NO! All I saw was a sea of faces, and they had their backs to

> me working on . Our lawyer says that Jim and I did well, and might

> get an offer to settle soon, but it will probably be small, because they

> will say had no potential to " be anything. " Our lawyer is also a

> nurse and said this is the worst case of negligence she's ever seen.

> Tell me about it!

>

> O.K, I'm done now. My mushy brain and I have to go scrub some walls.

>

> Sue - mom to Zack, 9, DS, 2 ASD's, VSD, bad mitral valve; Matt, 8, PFO,

> PDD, 's Anomaly, Cataracts, Glaucoma; , 4, DS, Asthma, G-tube

> (Now our angel boy 4/20/96 -- 12/31/00) " So you see, I love him, he's

> my son. And if my life with him is done, then finish off what you've

> begun. Make me wood, or stone or clay, if you take my heart away. "

> Since I Gave My Heart Away

>

> 's Candle Shrine

> http://artwells.com/oracula/anonimmus/shrine.html?shaemmusid=0111238045898

>

> 's Memorial Page

> http://hometown.aol.com/zmadad/page9.html

>

> DisLabeled Writings

> http://hometown.aol.com/zmadad/page11.html UPDATED!

>

February 9, 2002

I'd like to respond here, just my opinion.

Since Tara is only just turning 3, it is hard to see into the future,

but my thought is for her to have both types of friends, and which ever

one is more fun and satisfying for her, is the one that will last.

I do plan in getting her involved in some town activities, PAL, story

time at the local library........to tell you the truth, there are not

any other children with Ds in our town, that are close to Tara's age,

but there is one little girl 15 mins away that has Ds and is 1 month

younger than Tara, her mother and I are the best of friends, and have

invisioned them together, for later on in life.

Also being my 4th, and a twin, I suspect she will have friends from my

kids bringing home their friends.

We spoke of this topic at Tara's school once among the parents. I

remember one father saying, making the analogy that, kids tend to group

together as they get older by their intrests, weather they play the same

sports, in the same school clubs, he doesn't expect typical kids to

" hang " with his daughter who has Ds, he wasn't being mean, just

realistic.

Bottom line for me, whatever works or makes Tara happy..........

Gail.........Bobby 8, Jillian 5 1/2, and Tara{Ds} 2yrs. & 10mos

February 9, 2002

Dear Sara, Being the biological mother of three Down Syndrome, it has been our experiance that our kids' friends that they LOVE to get together with is the other kids with Down Syndrome. They get excited about their normal friends, but they get even more excited when the families with Down Syndrome kids come over. Ben tells me, "I am Down Syndrome (very proudly), is my friend!" (he is Down Syndrome too) When comes, they play Nintendo 64, eat together, watch movie after movie (Disney movies are their favorites), and play with Dinosaurs. We never have them tattle on each other. They are so companionable. loves her Down Syndrome friends. Her normal friends play with her but always "tattle" and tend to get impatient with her. Her Down Syndrome friends share so nicely with toys. They don't hit, shove, pull or tend to be "bossy" as her normal friends do! In fact, we find them hugging and watching kiddie videos. is only 4 1/2 and so far he's non verbal. He doesn't give very much eye contact and seems to be in a world of his own. I am beginning to wonder if he may also be autistic. He is anti- social with people. He tends to go off to a room by himself. If outside, he heads for the swing set and stays put right there. If I invited someone to come and play with him, I don't honestly think he'd give anyone, Down Syndrome or not, the time of day. Anyways, this has been our experiance so far. Joyce-mother of seven three are DS-Ben-18, -8, and 4 1/2 Group Question? I'm interested in what everyone else's view on the issue Marcia and I weretalking about. I'd love to know everyone's opinions on this issue:Do you think that your child with DS would benefit more from a friendshipwith another child with DS or a child without DS? Why?Thanks to anyone who responds.ttp://DSyndrome.com/Multiples

June 16, 2008

Mike,

I buy the regular ones at Wal-Mart. & nbsp; They usually last at least 6

months. & nbsp; I make it a habit to change them when the time

changes. & nbsp; & nbsp; Then the batterie I tke out f the stim I put in a clock.