what do you say???.....

[Guest guest]

In a message dated 4/16/02 8:07:26 PM Central Daylight Time,

ladywolfbear@... writes:

> Zach's sister, ,

> will be 16 next month. She's talking about getting her license. Zach

> piped

> up, " What about me? " It broke my heart. I cheer him on for the milestones

>

> that he does reach but I still mourn the ones that he won't. It think we

> all

> do sometimes.

>

Some young adults with ds drive. Wasn't Carolines son Darren taking drivers

ed? Whether he actually gets/got his permit, i don't remember, the big

thing is his mother gave him the chance to try. :-)

I'm not saying anyone is wrong in thinking it's a mile stone thier child

can't achieve, I'm guilty of that myself, hehe, it's something that I don't

see ever achieving, mostly because she's very impulsive and still a

handful, her steering of a bike is bad, she doesn't look when walking in

parking lots and across streets, letting her sit in front on the 4 wheeler

and 'drive' is a hair raising experience , no way would I ever let her

actually have control, at least not for years and years. and she's 12 now.

LOL Yet I know Green's , enjoys riding the 'quad'. to bad she

had to move into the city. LOL My sisters husband did yard work for a

family who's youngest daughter had ds, she'd be a couple years older then

, they were looking forward to teacher her to ride the quad, some people

really raised their eyebrows at that. LOL

But when it comes to milestones in life, one should never say never. hehe.

Time wil tell, and perhaps my will want to try (YIKES!!, scarey thought)

and perhaps she'll be like her uncle who didn't really care weather he got

his drivers liesense or not. hehe. I think he was like 19 before he

actually took the drivers test, maybe 20, he just really didn't care to

drive. LOL

Take care,

Joy

[Guest guest]

I really dont think we are trying to make having a ds child seem wonderful

and for those of us who have a child with ds know they can be stinkers!! Im

sure we could all tell some funny stories and some not so funny ones. Maybe

this is a good idea to share the funny and not so funny, and for the new

parents hang in there our experiences may not be yours and you may feel

better prepared after living our lives a little and just hang in there

having a child with ds can be hard work , funny very long hours at times. But

I think we all try to keep it to the light side for those who are new and for

those struggling, sometimes reliving hard times can be funny and sometimes it

can be trying for parents, but one thing I think we all have in common is our

deep commitment towards our kids with ds or not.. . We all live and learn

daily and its nice to know you are not the only parent out there who deals

with similiar issues as you are or have. I know for me that is enough support

knowing you are all there too facing the same struggles and I can go here to

air out things on a rough day. .. Nettie619

[Guest guest]

I am trying to write this carefully because I really

don't want to offend anyone...but sometimes there are those that I feel

romanticize what it is like to have a child with DS or a disability. I know it

is really helpful for me to read that there are others who still struggle from

time to time as well.

R.

Mom to (8, ds) and Grace (5)

,

Sometimes I worry that I post negative things about and it may scare off

new parents. We just got back from s Hopkins/Kennedy Krieger for Part I of

a behavioral evaluation. was in true form and the psychologist saw alot

of his behaviors (including hitting me). We go back in a month, where she wants

to spend time watching him in play. It looks like he's going to get the

diagnosis of Obsessive Compulsive Disorder. The psychologist was great, she saw

alot more than I do (like she really paid attention to what he was looking at

and could almost predict what he would do next). She also made me feel good by

telling me all the good things I was doing. We do so many different types of

behavior modifications based on his current behavior....and I get so many people

tell me to do this or do that. I feel like I've done my best to this point and

she will help work us through behaviors that need eliminated. She also is

referring us to the Assistive Technology Department to get assistance with his

AC device. brought it home and only 1/3 of it is being used. Anyway,

it's been a long day and I am going to lay down. We drove right in the sun on

the way home and my head is pounding.

ps Only go with a behavioral psychologist for behavior mod plans....listen to

what Kent says..he's right!

[Guest guest]

In a message dated 4/16/2002 10:23:34 PM Central Standard Time,

Nettie619@... writes:

> Maybe

> this is a good idea to share the funny and not so funny, and for the new

> parents hang in there our experiences may not be yours and you may feel

> better prepared after living our lives a little

Hi

OK I know Ive complained a wee bit lol but believe me when I tell you that

this decade with Sara has been a dream come true ......compared to all of the

years I escort my teens to adulthood OK I'm complaining about them now

lolololol

I do think often about how old Ill be when Sara hits 15-16 and I just don't

know if I can go through all of this again lol I'm praying real hard the Lord

will take pity on me and this era too will be an enjoyable one

Kathy mom to Sara 10...........who tries to stay positive, Ive experienced a

lot tragedies in my life but I don't view this as one of them

[Guest guest]

In a message dated 4/16/2002 7:40:54 PM US Mountain Standard Time,

JTesmer799@... writes:

> Yet I know Green's , enjoys riding the 'quad'

LOL....and will also be sure to inform you that She is 19, an adult and

you can't tell her what to do!!.I know........she TOLD ME!! She is so fun!!

Anyway, this is interesting that this came up. I was talking to another mom,

has a son just a year with DS. I had told her that we were driving in our

electic car and Mav saw a motorcycle and asked if he could have one. I told

him we'd have to wait til he was a " man " and see. He said, " Oh Yeah, when

I'm a man I'll have one becuase I'm going to be a motorcycle cop just like

Becca's Dad! " Now, in the past he has wanted to work at Mcs, Arby's,

Pizza Hut, the car wash, be a fireman..and now it's a cop. So I was talking

to my friend about it..and told her that if he wants to be a cop when he's a

man,,,he can be a cop. There MUST be some type of job he can have with the

police department where he can wear a uniform and work in the office or

something. Now, that's YEARS from now so who knows WHAT he'll want to be when

the time really comes.

We were just talking about the fact that Maverick will be what Maverick will

be and who knows WHAT that will be as long as he is happy. I let him drive

the electric car... he can't reach the pedals... and he needs LOTS of help

steering...(but, hey, isn't that what the school parking lot is for?). but

he drives,,just as his older brother and sister do.

I don't know WHAT he'll do with his future, but knowing my son, it will be a

very full future and if there are things that he isn't able to do...he will

be so busy doing the things he CAN do......that it won't bother him!!

[Guest guest]

Thanks for the encouragement but I know that Zach's chances of getting a

driver's license is slim to none. He still needs reminders to look both ways

before crossing a street....even a busy one. This whole thing probably

bothers me more than him. He is able to do lots of things on his own and I

am so proud of him!

We have a quadracycle (?)--a four wheeled bike for adults. His dad has one

too. We've both tried but he has no interest in riding it. He's my little

couch potato! LOL! (takes after me, I guess!)

Sorry about being such a gloomy person earlier. I was tired and needed a

nap. I feel better now ;-)

[Guest guest]

What a great mom you have Kathy. You should be so proud. Your story made me

smile OUT LOUD!!!!

Loree5-

From: b4alltoday@...

Sent: Tuesday, April 16, 2002 3:28 PM

Subject: Re: what do you say???.....

Boy this thread ran though my mind last night. I ran into a woman who teaches

sped at a local school. She asked me tons of questions about Sara......How

did I like her school, her placement, where she was developmentally,

academically etc..... I felt like I had to answer because of where I was and

she knows my Mom......a southern respect thing hit me lol anyway I was

cheerful and light hearted until she made some comments that floored me. One

was that she has a real problem with " our " kids getting all of these

academics and they don't know how to make a peanut butter sandwich (and how

in detail that this should change)..........I closed my mouth, I knew it had

to be wide open and I uttered " Sara knows how to make sandwiches " lolololol

my Mom made a tiny giggle and she finished this lady up...........I was so

proud of her, she told this lady, all of Sara's tales, even getting picked up

by the police and telling them where she lived. For a moment I was a

respectful daughter and my Mom became a powerful advocate......feeling the

need to defend her granddaughters place in life When I walked my Mom to

her car, she looked at me and said " some people talk to much, you just met

one " heehee

Kathy mom to Sara 10..........sometimes it is better to be silent and still

and let others carry you

[Guest guest]

It is not that he will never reach the milestone of his license, he may very

well, I guess depending on the degree of his disability, it may just take a

few years longer. Sherri mom to Tayler 3 1/2 and Cierra 2

ps. i know a couple of kids with downs that have their licenses, they just

have restrictions

Re: what do you say???.....

> ,

> Even at Zach's age, I still cry on occasion. As sweet as our kids are,

> there are many trying times with them or about them. Zach's sister,

,

> will be 16 next month. She's talking about getting her license. Zach

piped

> up, " What about me? " It broke my heart. I cheer him on for the

milestones

> that he does reach but I still mourn the ones that he won't. It think we

all

> do sometimes.

>

> Today, I am happy. Zach gave me a big hug and said, " I like you, Mom! "

What

> a cutie! (The other two are big huggers too <vbg>)

>

>

> Mom to Zachary (17/DS), (15) and (12)

> Boonville, IN

>

>

>

[Guest guest]

OK, How do I find one? Does the Ped. know who/ where they are? Does the Ped.

order the assessment? or does that come from school? Corrie BEAR has some

behavior issues.

Thanks!

B CNY

Mom to Heidi 11 DS, Caleb 11 NDA,

Corrie 10 DS and Mae 5 DS

GOD BLESS AMERICA!

ps Only go with a behavioral psychologist for behavior mod plans....listen to

what Kent says..he's right!

[Guest guest]

OK, How do I find one? Does the Ped. know who/ where they are? Does the Ped.

order the assessment? or does that come from school? Corrie BEAR has some

behavior issues.

Check with your insurance and go private if you can. That is my philosophy with

any evals. 's school felt the visiting teacher was qualified enough..she

does NOT have a degree in psychology. URGH. I would never, ever depend on the

school system to meet your child's needs. I'm not saying this against teachers,

just the school system in general. Parents must be their child's own case

managers, so to speak, because no one knows, loves, cares for and lives with the

child like the parent.

Part of the reason why I continue to take to KKI for evaluations is

because he started going there when he was a baby. I want the important stuff

kept in one place. If we move south in 6 years, I'm still going to continue to

make trips to Baltimore to KKI. Besides, they only see children with

developmental disabilities...so experience is not an issue.

[Guest guest]

I don't think that only the positive or lighter issues should be

discussed. It is nice to have someone to share your successes but it is

the difficult & uncertain tumes that you realluy need a shoulder to lean

on. To me that is a big part of what this list is about. It would paint

an unrealistic picture for new parents to only hear about all the fun

stuff, even if thats what they want to hear. We all have to wake up and

smell the coffee sometime. I am just 4 months into this journey but one

thing I have learned very quickly from this list is that our kids may

have some common issues but they are are still individuals and every

child will not face every problem related to DS. When I read of someone

going through something particularly difficult of corse I hope we won't

have to face it but it is nice to know there are many pioneers out there

to help me through if I do.I think there is a healthy balance here and I

find that most of you have a really positive attitude even through the

struggles.

Hope mom to (15) (11) and (w/mds)

Nettie619@... wrote:

> I really dont think we are trying to make having a ds child seem

> wonderful

> and for those of us who have a child with ds know they can be

> stinkers!! Im

> sure we could all tell some funny stories and some not so funny ones.

> Maybe

> this is a good idea to share the funny and not so funny, and for the new

> parents hang in there our experiences may not be yours and you may feel

> better prepared after living our lives a little and just hang in there

> having a child with ds can be hard work , funny very long hours at

> times. But

> I think we all try to keep it to the light side for those who are new

> and for

> those struggling, sometimes reliving hard times can be funny and

> sometimes it

> can be trying for parents, but one thing I think we all have in common

> is our

> deep commitment towards our kids with ds or not.. . We all live and learn

> daily and its nice to know you are not the only parent out there who

> deals

> with similiar issues as you are or have. I know for me that is enough

> support

> knowing you are all there too facing the same struggles and I can go

> here to

> air out things on a rough day. .. Nettie619

>

>

>

[Guest guest]

Hi Patty,

One thing I learned in the 21 months that Summer is around now is that

honesty always works for the best. Most people don't mean anything wrong by

making these comments. It's just difficult for them to react in a appropiate

way. And lets face it, before we had Summer, and I think that goes for most,

we found this difficult to. Some parents are so easily offended. Some are so

fast in going into the defence.

When I walk with Summer into town or into the supermarket and she is

stealing the show again and everyone smiles and looks at her, I feel proud

that she is my daughter. Maybe there are some who have negative thoughts but

I just try to see the sunny side of people and am sure that most look at her

with nothing but good feelings in them. And then I get the same questions.

Yes, she's tiny, even for a child with Down's: is what I reply mostly. I

know for sure that everyone sees that she has DS. And why not. DS is a part

of her. Is a part of who she is. Is a part of the Summer that makes me feel

so happy.

Whatever reason people are looking, I think you are right to make contact.

And you'll find out that most are only interested or just look at her

because she's beautifull. In any way, I educated someone. And every educated

person is one less one that stares because they don't know.

Rob

dad of Merel and Summer

the Netherlands

http://summerdown.freeservers.com

ps. I agree that everyone should be able to post there feelings here. Here

we are among others who should understand. A safe haven where everyone feels

free to be who he or she is. With al the fears, troubles, grieves and joys.

>

> Hey everyone, I have a question, I'm not sure how to word this, but I've

been thinking about it from time to time....

>

> I don't take Olivia out very much, but now that I expect it SHOULD be

warmer sometime soon (!!), and she will hopefully not be sick for a spell,

we'll be going places - my 3 small kids. Time to time I've come across it,

but I am still wondering at times what to say to people who comment or ask a

question about Olivia. Usually the first question is, " How old is your

baby? " If I answer honestly, and say 8 months, the next thing is usually,

" she's tiny! " Now I know if I want to avoid further discussion, I could lie,

say she's 2 or 3 months, but usually I haven't. What have you done in this

situation? I don't mind discussing her at all, but sometimes I'm not in the

mood.

>

> The other thing is, when I've taken her out, I am not sure sometimes if

people are looking at her because she's a baby, or a baby with a gtube, or a

baby with DS. If I am in a talkative mood, I will sometimes matter-of-factly

come out and say it myself, thinking that it should just clear the air with

the other mom I'm sitting next to at a play place or whoever. Or sometimes

I'll ask, as they're commenting, " can you tell she has DS? " because I know I

can't always see it - I just see my beautiful Livi.

>

> Does anyone have any input on this subject?

>

> Thanks,

>

>

>

>

>

> Patty

>

> mom to (17), (5), (2 3/4) & Olivia, (8 mos: ds)

[Guest guest]

In a message dated 4/16/2002 4:56:42 PM Eastern Daylight Time,

b4alltoday@... writes:

<< a southern respect thing hit me lol anyway I was

cheerful and light hearted until she made some comments that floored me. One

was that she has a real problem with " our " kids getting all of these

academics and they don't know how to make a peanut butter sandwich (and how

in detail that this should change)..........I closed my mouth, I knew it had

to be wide open and I uttered " Sara knows how to make sandwiches " lolololol

>>

There's a lot to be said for your manners. I really respect that. The New

Yorker in me would have said, " ... and I have two brothers and a nephew who

made in through college and can't boil water without burning it. So what's

your point? " or " Gee. I don't remember learning that in school, do you? "

Kathy, Liam's mom(4)

[Guest guest]

I try to look at the positive side of life.. if I don't.. I think I'd lose it

completely! hee.. we all have hard times with " any " child, not just a downs

child. It is hard raising kids PERIOD.. so I think just trying to stay positive

is what gets me through.

Shar

[Guest guest]

I agree with your post 100% Hope. Good point. Yes each child is individual

just like any other kids. Each child will do things differently. Some may

struggle more than others. Some may take longer to reach a milestone, but

WILL reach that milestone when he/she is ready. All our kids are different

but i do learn alot from each post i read and i enjoy learning. I'm glad we

have this group because in a nutshell we all can relate to one another good

or bad. And it feels good to know i have a place to turn to with

understanding people that are in the same boat as i am.

Davina,mom to Kyron 9;Kyrell 6 mds;Kierra4

[Guest guest]

In a message dated 4/17/2002 5:22:17 PM Eastern Daylight Time,

froh@... writes:

> I agree with this statement.

> Minti

> Ariana 9 DS

> 7

> Alaina 4

>

>

I like the A names. I did something simular with my kids, but i used K names

from my husband's name. Just wondering where the A's are from?

[Guest guest]

> i live in MD. I saw your post about Kennedy Krieger. Do you live in

Md

> also? I hope all goes well with . Good luck on his progress.

Things

> could only get better.

> Davina, mom to Kyron 9;Kyrell 6 ds;Kierra

>

>

Speaking of Md., we've been thinking of moving there. Can anybody give me

any info? How are services for our kids? How well are they doing inclusion?

Where are the best places?

Thanks,

Donna & (9ds)

[Guest guest]

I agree with this statement.

Minti

Ariana 9 DS

7

Alaina 4

> Kathy mom to Sara 10...........who tries to stay positive, Ive

experienced a

> lot tragedies in my life but I don't view this as one of them

[Guest guest]

Why do you need time off during your pregnancy? You will probably want time

off after you have the baby. I worked through both of my pregnancies and

went back to work with amanda after 6 weeks and with my son after 3 months.

~ Mom to 11 DS and Diabetes Type 1 and 7 NY

[Guest guest]

That was perfect for this thread!

~ Mom to 11 DS and Diabetes Type 1 and 7 NY

[Guest guest]

In a message dated 4/18/02 9:32:59 AM Central Daylight Time, Mom2lfm@...

writes:

> There's a lot to be said for your manners. I really respect that. The New

> Yorker in me would have said, " ... and I have two brothers and a nephew who

>

> made in through college and can't boil water without burning it. So what's

>

> your point? " or " Gee. I don't remember learning that in school, do you? "

>

> Kathy, Liam's mom(4)

>

Good answers. I'd think of them tomorrow. I'm very good at them but

slow.

Jessie, Mom to , 37 and the light of my life.

[Guest guest]

In a message dated 04/17/2002 7:15:57 AM Eastern Daylight Time,

rhsikes@... writes:

<< I don't think that only the positive or lighter issues should be

discussed. It is nice to have someone to share your successes but it is

the difficult & uncertain tumes that you realluy need a shoulder to lean

on. To me that is a big part of what this list is about. >>

I am so happy to hear a new mom say this. I produce the newsletter for our

local support group. I have been told by a group of new moms that they only

want to read the feel good, warm fuzzy stories in our newsletter. They don't

want to read the research info, medical info or educational info I put in

every month. So tell me, how do I let them know they NEED to read that stuff

and warm fuzzy stories is not going to give them the information they need to

provide the best oppportunities for their child, to make the best decisions

for their child or to provide the best medical care for their child? Wake up

and smell the coffee was just one of the phrases I wanted to say to them!! ;-)

Cheryl in VA

[Guest guest]

I would tell them that it is very important they read the good stuff and some

of the stories we discuss on the difficulties we face so they may be better

prepared in days ahead, this is what I suggest and I sure wish I had this

group when my daughter was little maybe I would not have had such a terrible

time and feeling alone , it really does help knowing the things you and your

child are going through are NORMAL!! ANd we all have faced things at one time

or another. IT really is their choice on what to read , but they will

probably be amazed at how well we all triumped through our difficulties also.

And it really does help to AIR things our with Friends who have been there

and that are there dealing with the same issues. But of course we all deal

with things at our own pace as our brains can accomadate these emotions and

everyday JOURNIE " S------------------------- LOL----- and thats what life is

one big journey that leads us many strange and difficult places where we

learn everyday about who we are and what our purpose is in life! Thanks

Nettie619 OR Jeanette Mom to 4 , including 9 with ds and legally blind

[Guest guest]

Cheryl,

You don't. It is not up to you to decide when they are ready to accept

information about their child's disability. Every parent will move at their own

pace in learning about the life they will be leading in the world of parenting a

child with DS.

What is wonderful is that you provide a mix of warm fuzzies and helpful

information. Each person will take from your offerings what they need at the

time. Even the same person will need different things at different times. I

think you are doing a phenomenal job of teaching new (and old!) parents. Keep up

the good work and don't worry about who needs what when.

B CNY

Mom to Heidi 11 DS, Caleb 11 NDA,

Corrie 10 DS and Mae 5 DS

GOD BLESS AMERICA!

So tell me, how do I let them know they NEED to read that stuff

and warm fuzzy stories is not going to give them the information they need to

provide the best oppportunities for their child, to make the best decisions

for their child or to provide the best medical care for their child? Wake up

and smell the coffee was just one of the phrases I wanted to say to them!! ;-)

Cheryl in VA

[Guest guest]

In a message dated 4/19/02 7:44:53 AM Central Daylight Time,

wildwards@... writes:

> So tell me, how do I let them know they NEED to read that stuff

> and warm fuzzy stories is not going to give them the information they need

> to

> provide the best oppportunities for their child, to make the best decisions

>

> for their child or to provide the best medical care for their child? Wake

> up

> and smell the coffee was just one of the phrases I wanted to say to them!!

> ;-)

> Cheryl in VA

>

>

some people do just need to get to the point of looking at more information

in their own time Cheryl. Put the stuff in the newletter along with the

warm fuzzy stuff, after all they do have a choice of which articles to read.

Then if they encounter a problem they can always go back and read what they

weren't ready to read before.

hope that makes sense. hehe

Joy