staring

April 9, 1998

Lori,

We just returned from vacation so I'm catching up on my email.

I always talk about our differances in a matter of fact way. I've told the

kids we have some learning disabilities and some metabolic differances.

These things make us have to make some unique choices like in diet and

learning but also allow us to think in different ways and that is good

sometimes as we think of things others wouldn't (more creatively sometimes)

and we are very bright to be able to work hard to compensate for our

problems.

Because we have had to go thru these hardships too, we are more

compassionate and understanding people than people for whom life has been

smooth and easy. And we are also able to help others better.

Since we know we think differantly and have some problems we know to ask for

clarification and special help. I try telling them sometimes it's fun to be

the center of attn. getting one on one help! I say our way of learning is

many times more fun with all the visual and tactile helps.

We talk about learning patience and being forgiving of ourselves and others.

I've learned to walk up to someone and talk with them about obvious problems

in public and share some of ours in the spirit of comraderie if it is

appropriote. I share infor. about our disabilities willingly and have made

many friends and friendly acquantiences.

S.

Re: staring

>

>Lori-

>

>I think kids know when they are different. I also think it helps them to

>know that you know and accept it. I had a 6 year old tell me that she

>knew that she walked funny and had trouble learning, but she didn't

>think her mom knew and therefore she must keep it a secret from her mom

>(not wanting to hurt her mom). This is just my opinion.

>

>Laurie

>

>------------------------------------------------------------------------

>

April 2, 1999

-

I agree completely.

Your comments made me think of an instance when my 27 year old was about

4. I taught physically impaired children, so her was very comfortable

with special needs people and familiar with manual wheelchairs. One day

at the mall, there was a man in a power wheelchair. In a split second,

he had run over to the man and climbed into his lab, asking to let him

make the chair " go " . The man certainly was shocked and didn't know what

to do. I was very proud of my son and went up to the man and apoligized.

At that point he let try the controls. Comfort comes from exposure

and experience.

Laurie

April 2, 1999

Lori-

I think kids know when they are different. I also think it helps them to

know that you know and accept it. I had a 6 year old tell me that she

knew that she walked funny and had trouble learning, but she didn't

think her mom knew and therefore she must keep it a secret from her mom

(not wanting to hurt her mom). This is just my opinion.

Laurie

April 2, 1999

Good morning Lori,

I think kids (and adults too) stare as a way of discovery and learning. Kids

at first glance, will notice somthing is different about our children. They

will then take the time to look carefully and examine the exact differences

and make a mental note of them. I think we all do this when we see something

new but kids haven't learned how to do it politely yet. My daughter is

legally blind and in a wheelchair so we also have people stare when we go

out in public. I am a great believer in total integration of the diabled

into society so I encourage children who come up to Jill to ask questions,if

they have any. I know this is not the approach for everyone but I want

people in general to be comfortable in seeing Jill in public as well as Jill

feeling comfortable. I find that adults will often stare from farther away.

I usually address this by making eye contact with them and giving them a

small smile. It lets them know I have aknowledged their staring at my

daughter and ususally they stop staring. Occasionally someone will ask a

question about her and I never mind answering there questions. The only way

for the average Joe to become comfortable with seeing people with

disabilities, is for us as their advocates to encourage interaction and make

them realise that our children are not any different on the inside and

that's what really counts. It is another important part of being the parent

of a mito child: educating the general public so our children have a nicer

world to live in while thy're here.

April 2, 1999

,

What a wonderful way to handle staring! I have a 3 yr old who doesn't talk,

still uses a pacifier, still wears a diaper and is overall developmentally

delayed. People are just now starting to look at her differently.

Especially when kids or adults come up to her and say hi and ask her name,

she just smiles, gets really excited and usually puts her fingers in her

mouth. Then I have to explain that she doesn't talk.

I know some handicaps are more noticeable, but you can't believe the

comments we get because she still sucks on a pacifier and isn't potty

trained yet! As Savannah gets older, I hope I can handle people's curiosity

as gracefully as you!

Thanks for sharing,

Lipps

still patiently waiting (ha ha ha).......(for biopsy results from Shoffner)

>From: " McGarry " >

>Good morning Lori,

>I think kids (and adults too) stare as a way of discovery and learning.

Kids

>at first glance, will notice somthing is different about our children. They

>will then take the time to look carefully and examine the exact differences

>and make a mental note of them. I think we all do this when we see

something

>new but kids haven't learned how to do it politely yet. My daughter is

>legally blind and in a wheelchair so we also have people stare when we go

>out in public. I am a great believer in total integration of the diabled

>into society so I encourage children who come up to Jill to ask

questions,if

>they have any. I know this is not the approach for everyone but I want

>people in general to be comfortable in seeing Jill in public as well as

Jill

>feeling comfortable. I find that adults will often stare from farther away.

>I usually address this by making eye contact with them and giving them a

>small smile. It lets them know I have aknowledged their staring at my

>daughter and ususally they stop staring. Occasionally someone will ask a

>question about her and I never mind answering there questions. The only way

>for the average Joe to become comfortable with seeing people with

>disabilities, is for us as their advocates to encourage interaction and

make

>them realise that our children are not any different on the inside and

>that's what really counts. It is another important part of being the parent

>of a mito child: educating the general public so our children have a nicer

>world to live in while thy're here.

>

April 2, 1999

This is an adorable story, Laurie. I love it!

Lori

April 2, 1999

Hi ,

I agree with you. I want people to know about Alycia and ask questions but

unless the ask me a question,

I don't know how bring up the subject out of the clear blue.

With Laurie's suggestion, I can at least try to encourage a child that stares at

Alycia to interact by

having Alycia say something like " my name is Alycia. What is your name? " . Then

perhaps this will

encourage the child to talk or play with her for awhile and get to know her.

When Alycia was younger, adults would say things like " she looks sleepy, I think

she needs a nap " but no

one really says much anymore. Now that she is older, it is apparant that her

sleepy look and drooling

isn't age appropriate and I don't think they know what to say. (This is my guess

as to why adults stare

anyway....she looks like a regular kid to me) More to the point, I don't know

how to approach adults that

stare and ask if they have questions so I do like Cheri and just smile at them.

I was most certainly getting dirty looks from adults at Macs because

Alycia was using a high chair

(she can't sit in those plastic slippery seats without falling off and she

doesn't know how to kneel ) and

there weren't any chairs left for their toddlers who by the way walked 100%

better than Alycia! One

mother looked at Alycia in the chair and said to her child " well, sweetie, it

looks like all the high

chairs are gone, you are going to have to kneel in you chair so you can reach

the table " . I wanted to

speak up and explain that Alycia is handicapped which is why she needs to be

using a high chair even

though she isn't a baby but then do I want to say something like that in front

of Alycia? Is it ok to let

Alycia know that she is handicapped?

Lori

April 2, 1999

Hi ,

I agree with you. I want people to know about Alycia and ask questions but

unless the ask me a question,

I don't know how bring up the subject out of the clear blue.

With Laurie's suggestion, I can at least try to encourage a child that stares at

Alycia to interact by

having Alycia say something like " my name is Alycia. What is your name? " . Then

perhaps this will

encourage the child to talk or play with her for awhile and get to know her.

When Alycia was younger, adults would say things like " she looks sleepy, I think

she needs a nap " but no

one really says much anymore. Now that she is older, it is apparant that her

sleepy look and drooling

isn't age appropriate and I don't think they know what to say. (This is my guess

as to why adults stare

anyway....she looks like a regular kid to me) More to the point, I don't know

how to approach adults that

stare and ask if they have questions so I do like Cheri and just smile at them.

I was most certainly getting dirty looks from adults at Macs because

Alycia was using a high chair

(she can't sit in those plastic slippery seats without falling off and she

doesn't know how to kneel ) and

there weren't any chairs left for their toddlers who by the way walked 100%

better than Alycia! One

mother looked at Alycia in the chair and said to her child " well, sweetie, it

looks like all the high

chairs are gone, you are going to have to kneel in you chair so you can reach

the table " . I wanted to

speak up and explain that Alycia is handicapped which is why she needs to be

using a high chair even

though she isn't a baby but then do I want to say something like that in front

of Alycia? Is it ok to let

Alycia know that she is handicapped?

Lori

April 3, 1999

My daughter is in a wheelchair and cannot talk, and we have endured the

stares at the mall so I know what that feels like.

But sometimes I think I am guilty of staring at the mall. When I am alone

at the mall, and I see a mother with a special needs child in a wheelchair I

am not staring because of curiosity. I am staring because I am thinking

what a precious child. I just want to go over there, and hug the child and

talk to him/her. It does not matter if he can't answer me. It does not

matter if he drools on my dress shirt - that's been done many times before.

I want to tell the mother that I know what she is going through. My

experiences as a father of a very special daughter for 10 years has made me

turn to mush when I see a child in a wheelchair and I just want to say hi

and give them a big hug. Sometimes I think I stare too long, but I don't

mean to. Just thought I would give a different spin on this topic.

Grady

Father to Tyler (10) Complex 1 and (12) nda

April 3, 1999