out in public

January 13, 2004

In a message dated 1/13/04 5:20:20 PM Eastern Standard Time,

srssjm@... writes:

What things have worked to help make things easier for you as parents in

public with your children?

does well in church, the teenage girls take turns holding him in

their laps to help us out.

He loves the book store because they have a train set for him to play with.

He hates going to Lowe's or Home Depot. Sometimes he does well in Wal-Mart

other times he is just miserable.

I thought if we shared what works for each of us, it could help all of us.

I appreciate your input,

Roni

First, it helps a LOT if I give plenty of warning about an upcoming

activity. She HATES surprises, so (for example) several days before a family

trip I will start explaining step by step what to expect -ie wake up, get

dressed, drive in car to airport, get on airplane, change airplanes, get on

another

airplane, get off, drive to hotel, sleep at hotel for 5 nights. The first time

I tell her I usually get a negative response. By the time I've run thru the

drill 8 - 10 times she's at least prepared and not so resistant.

Same applies to first day of school, going to a new place, etc.

Also if we need to go some place unpleasant, I provide for a treat after (she

LOVES going to the grocery store and buying markers for example, or a trip to

the park to play on the monkey bars.) So I'll go thru the litany of upcoming

events, ending with the favorite activity. She knows she's got to do

something unpleasant (ie trip to get blood work) BUT she knows there is going to

be

something to look foreward to right after... so she can associate the negative

with something positive that makes it " worth it. "

In some cases we have just had to work up slowly to situations. Sometimes I

clap my hands over her ears when I realize the situation is too loud (parades,

load echoing annoucements in stores, etc). I expect for your child, Home

Depot is just too large, echoing, plus lighting is probably unpleasant. WalMart

may get too crowded and disconcerting. Bookstores tend to be smaller and divided

into small controllable spaces - loves hanging out in the Children's

section with the kid sized chairs. She knows right where to go to find the

Clifford coloring books (another favorite activity!) She is now 11 and she is

definitely getting a lot better with age. Moving around the hallways alone in

middle school is a problem - she needs to be holding onto a teacher or aide

(sensory overload I expect - makes her feel disoriented).

I HAVE observed that she will take risks if there is something she really

wants - in her case she really wants to be one of the " regular kids " and can be

talked into doing things by the typical kids that adults/teachers/myself can't

get her to do. One of the BIG reasons Inclusion is important for her!

- Becky

January 19, 2004

Just reading my mail, lol. Catching up here.

As for Austin in public, with twins, lol, we go wherever we need to go. They

have been going places since they were on their way HOME from the hospital.

If they are acting up, either one, they hear about it. They both know what's

expected behavior wise, and generally live up to it. Now, if it's a noisy

place, and it's affecting Austin, we make it a point to do what we need to do

quickly, but we still do what we need to do, go where we need to go. Might

sound

uncaring, whatever, but we treat the boys the same, cutting Austin no slack,

as he tends to take advantage of the idea if we do...lol. Yes, even at 6

years old. But then again, he loves to go places, loves people in general, and

we

feel that it's because we have always taken him EVERYWHERE! Good luck, lol.

I know kids are all different.

Beth, Mom to Austin, 6/ds and Dakota, 6

January 19, 2004

Be thankful Beth. We also expect our children to behave - and the three older

ones did, but with it's a different situation. We tried to take him

everywhere, but now we are more selective.

Re: Out in Public

Just reading my mail, lol. Catching up here.

As for Austin in public, with twins, lol, we go wherever we need to go. They

have been going places since they were on their way HOME from the hospital.

If they are acting up, either one, they hear about it. They both know what's

expected behavior wise, and generally live up to it. Now, if it's a noisy

place, and it's affecting Austin, we make it a point to do what we need to do

quickly, but we still do what we need to do, go where we need to go. Might

sound

uncaring, whatever, but we treat the boys the same, cutting Austin no slack,

as he tends to take advantage of the idea if we do...lol. Yes, even at 6

years old. But then again, he loves to go places, loves people in general,

and we

feel that it's because we have always taken him EVERYWHERE! Good luck, lol.

I know kids are all different.

Beth, Mom to Austin, 6/ds and Dakota, 6

January 19, 2004

Beth,

also tries to take advantage if she is allowed. Shw had

blood work done for her ent surgery. This is the first time she gave anyone a

hard time taking blood. she kept saying no and pulling her arm away. For

the rest of the day she would point to her arm and say ouch, hurt. She was

trying to avoid having to pick toys up.

also has no problems going places. She loves going

shopping. Usually before Christmas she goes on an all day shopping trip We

leave the

house at 8am and get home between 8-10pm. She never had parent separation

anxiety. She has always been around a lot of people. She started center based

EI at 4 months. Classroom setting at 2 years of age.

I think the best thing was taking them everywhere when they are very

young. Because they don't know any different.. It's just another part of

life like going to school.

Maureen

9y

4 1/2y ds

a 22m

Jillian 10m

January 19, 2004

In a message dated 1/19/04 10:31:56 PM Eastern Standard Time,

cindysue@... writes:

As for Austin in public, with twins, lol, we go wherever we need to go. They

have been going places since they were on their way HOME from the hospital.

If they are acting up, either one, they hear about it.

we took everywhere too.... and work on desensitizing as much as

possible... but when you get the physical reaction of throwing up (like she did

when

she was 5 in the movie theatre) you've got to recognize that everything is

not the result of " bad " or " wilfull " behavior - somethings are due to a true

physical reaction.

- Becky

January 19, 2004

In a message dated 1/19/04 10:31:56 PM Eastern Standard Time,

cindysue@... writes:

As for Austin in public, with twins, lol, we go wherever we need to go. They

have been going places since they were on their way HOME from the hospital.

If they are acting up, either one, they hear about it.

we took everywhere too.... and work on desensitizing as much as

possible... but when you get the physical reaction of throwing up (like she did

when

she was 5 in the movie theatre) you've got to recognize that everything is

not the result of " bad " or " wilfull " behavior - somethings are due to a true

physical reaction.

- Becky

January 20, 2004

> We tried to take him everywhere, but now we are more selective.

>

The same goes for Gavin. We have always taken him everywhere we

went and it was usually a positive experience. Not so now that he is

getting older. We've had many behavior episodes out in public that i

would much rather not have to go through. Now we really look at how

he's feeling before venturing out. Is he tired, not feeling well,

just not having a good day, etc. If any of the above, we don't even

attempt an outing. We also plan everything around his nap schedule.

He's been on risperdal for 4 weeks now and we're seeing some slight

improvements. Hopefully it'll continue getting better. It's not

fun when a little boy is hitting you and having a meltdown and

everyone is looking at you as if you're a bad parent that needs to

discipline the child. <<< sigh >>

Traci and Gavin, 4

January 20, 2004

I also expect alec to behave in public, but it is not always so. years ago,

our behaviorist suggested that we stop taking alec places where we know he

will act out. we stopped and have slowly introduced some of the places again.

he is much more successful now, but there are still places that i will not take

alec to.

alec's dad tends to take alec places that i would not take him and has many

more behavioral challenges then i do with alec. i understand that he only has

alec and his sister one day a week, so he wants to take them different places.

i want alec to learn to be better behaved so i set up the situations that i

know alec will succeed in.

for those of you who can take your kids anywhere, you are very lucky--and

enjoy it. for those of you whose kids are tuff, know that most will get better.

Lori mom to Alec (11DS) and le (15-teenager)

January 20, 2004

The psychologist just left here (an intern, not the regular one) and she said

she has many things for us to work on to help with these issues. I do have

hope..always have, but having a real behaviorist helping " hands on " so to speak,

is what we need - and thank God we are getting that help.

And Tim can take to get his haircut but I can't - go figure!

Re: Out in Public

I also expect alec to behave in public, but it is not always so. years ago,

our behaviorist suggested that we stop taking alec places where we know he

will act out. we stopped and have slowly introduced some of the places again.

he is much more successful now, but there are still places that i will not

take

alec to.

alec's dad tends to take alec places that i would not take him and has many

more behavioral challenges then i do with alec. i understand that he only has

alec and his sister one day a week, so he wants to take them different places.

i want alec to learn to be better behaved so i set up the situations that i

know alec will succeed in.

for those of you who can take your kids anywhere, you are very lucky--and

enjoy it. for those of you whose kids are tuff, know that most will get

better.

Lori mom to Alec (11DS) and le (15-teenager)

January 21, 2004

Colleen is bright, articulate, well educated by the local system and by me (

teacher with over 20 years experience. ) Puberty hit, and I suddenly had a

stranger living in my house. Behavior issues flying at us so fast I can't keep

up. She is desperately trying to control her world, and doing the opposite of

everything we thought we taught her. Anxiety attacks that lasted of hours a

day , and months at a time. Doctors, drugs, ( which I hate ), counseling, you

name it we've done it to find help for her. It is exhausting and frustrating.

Our life ( mine and hubby ) is our kids. We have been together for 35

years, have been an example for all 3 of our childen, and it was work and luck

and sweat and tears, and it ain't ( oops, not a word ) over. We don't know

what the next day will bring. Our life has been an adventure the likes of which

I never signed up for. Please go easy on me. Life has beat me up enough. I

am tired, now.

But I love her. She is mine, and You are lucky you don't have her. God

gave ME the grace to deal with what was given to me.

Diane

January 22, 2004

In a message dated 1/22/04 3:45:39 AM Central Standard Time,

writes:

>

> That said, all of our children are different. Other parents should do

> what is best for their child and their family. If it is really

> stressful to take a child in public, think about not doing it right

> now. This isn't a " must do " activity at any particular point.

>

> Rick

>

Rick,

I still feel that responsibility of being visible in our community.

Unfortunately isn't as civic minded as I am. Actually, I want him known in

our

community for his sake. I firmly believe that the more people that know him and

recognize him the safer he is.

Going somewhere with is generally not easy, even at 15 years old.

Whenever we go anywhere the focus is on and using appropriate behavior. I

wish it could be different and I am certain we will get there some day.

Karyn

January 22, 2004

In a message dated 1/22/04 3:45:39 AM Central Standard Time,

writes:

> When a child has such difficulties as those described, the parents are

> tortured. They want what is best for their children. They want their kids to

> participate in the world. The parents want to be able to participate in the

> world. They deal with the thoughtless and uninformed opinions and " helpful "

> advice of others. They bite their tongues when faced with useless accusations

> and glares. Pointing fingers helps neither the child nor the adult. It

> causes the adult to withdraw or become defensive. It is less likely that the

> child will have more opportunities to expand. Really, why would I want to

> subject a child who is already stressed with more stressing agents in the form

> ignorant " do gooders " or the judgemental crowd that is always so ready to

blame

> and seldom there to assist in any helpful manner

On a positive note in this thread, I have wonderful memories of people that

have helped us out when things have gotten down right rotten in public. The zoo

staff person who was very nice about retrieving a shoe thrown into the

penguin pond, the woman who distracted when he refused to move from a path

and

got him back on track with natural redirection, the store clerk who keeps him

focused on the purchase he is making that prevents impulsive actions, the dr

or nurse that understand he can't wait and make accomodations, the numerous

bands at festivals and community events who have obviously accepted and enjoyed

's love of their music, the church congregation that all smiled when

plinked the piano on his way out of church during a service.

The list of people in 's daily life that look beyond the difficulties

and make a positive difference way beyond what is required like the strings

teacher in elem. school who shared her love of music and instruments with

in

a way he could manage, the school custodian who shoots hoops with on a

regular basis, heck, the school secretary who tolerates crumpled up attendance

sheets, all the school personnel who don't blame me when they have

difficulty.

Such a long list, I think I need to post this list on my refrigerator to help

me through those rough times.

Karyn

January 22, 2004

Judi,

I am one of the many parents who have also done the best they can in raising

their child in the appropriate manner. We have taken parenting classes, and

have 13 years experience in raising our own children. I also have classes in

early childhood education, child psychology, etc., and have worked with children

for many years before having our own.

I have received numerous comments about my children about how extraordinarily

well behaved they are.

But, we still face challenges with taking , age 7 with DS, out in

public.

He does sometimes act out, and we are all made miserable.

You have to be extremely careful about how you discipline children in public,

especially children with disabilities. All it takes is one phone call, and you

may never see your children again.

I brought this subject up to share a burden with other parents in a similar

circumstance and to see what advice and support they could offer.

I have to tell you, your email " sounds " like your saying, if the rest of us

would just get our act together we wouldn't have any problems. As parents of

children that face challenges we don't need to have additional false guilt

thrown in our faces. We have enough of that from the world we live in.

Please try to be a little more supportive.

Roni

January 22, 2004

In a message dated 1/22/04 4:45:36 AM Eastern Standard Time,

writes:

> I'm sorry to mislead you but I don't think that I'm " just lucky " in any

> way. My child is well behaved because of the fact that I have disciplined her

> in a loving and gentle way.

Oh, honey, you jsut don't know how lucky you are! Count your blessings.

Sheila is a great young lady and is very polite. In situations where she is

comfortable and secure her behavior is NOW generally very good. My husband and I

have

been consistent in our handling of her and have worked hard through her

difficult times because we are good parents. But some of our children despite

all

the same things you are doing right have children with behavior difficulties.

It isn't because you have the " magic formula " or the " right stuff " (certainly

it all helps) that your child's behavior is exemplary, your just lucky. ;-)

nancy - PROUD mother of Sheila

January 22, 2004

Karyn,

I like the way you mentioned all those people who have been there for -

all those silent " K & G's " (we call that kind and gentle). I was thinking

about that also- people we dont normally thank or acknowledge for helping us out

and being tolerant.

There are many people who have taken amanda under their wings, usually out of

the goodness of their hearts. I end up worrying about her less and she ends

up gaining some independence and most people like doing something special for

her.

So, thanks for reminding us to be mindful about all our K & Gs!

January 22, 2004

WHOA HOSS!! I do NOT want credit for THIS post. I most assuredly did NOT write

the passage below. I wrote a post that discussed it.

Elaine

out in public

In a message dated 1/21/04 11:37:40 PM Eastern Standard Time,

dbonorato4@... writes:

I'm sorry to mislead you but I don't think that I'm " just lucky " in any

way. My child is well behaved because of the fact that I have disciplined her

in

a loving and gentle way.

There is a lot of " luck " (good and bad) when it comes to kids with DS because

it's a " syndrome " and does not manifest the same in every kid.

First - it's " luck " that we even have kids with DS - unless you had your

child well over the age of 40 when the odds drop significantly. Statistically

most of us had out kids before that.

Not to take away from your great parenting skills - but if you have a child

with severe SI (sensory integration) issues, no amount of superior parenting

is

going to totally negate that condition. It's " luck " whether your child has

got SI - just as it's " luck " whether your child has celiac, heart conditions,

reflux, strabismus, etc.

It's our daughter's () bad luck that she has DS, apraxia, and SI issues.

It's her good luck that she has no heart issues, atlanto-axial displacement,

or other serious health issues (outside of chronic sinus infections).

The rest is what we make of it. All your kids are " lucky " to have you as

parents.

- Becky

January 22, 2004

You all have been terrific in your responses. Thanks for all your responses and

honesty. I've enjoyed reading each response - it's obvious we are all very

passionate about our children.

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January 23, 2004

Wow, what an interesting thread. All that responded said it all so

well, that I'll just say ditto! I am also one of the ones dealing

with some behavior issues. It's nice to know that there will be

supportive people here to lean on. I do know that Gavin's behavior

isn't because he's a " bad " boy, nor is it a reflection of bad

parenting. Although I certainly don't claim to be the best caregiver

in the world!!! Thanks to all that opened up and shared their

experiences. And thank you for letting us know that it's okay

to share not only the good, but the not so good things, as well.

Traci and Gavin, 4

January 23, 2004

went everywhere with us up until she was around 8 or so, at which time her

behavior when we went shopping or whatever was bad enough that it was better for

all to leave her home some of the time. Behavior problems can occur at any age.

is still young, it's hard to predict whether she'll continue to act

appropriately when shopping all day when she's to big for the ride....at which

time you may spend more time chasing her around then actually getting any

shopping done. not to mention the gray hairs that come when the kid who was

acting so great and staying with you just fine takes off when you stop to look

at something....I lost at the Mall of America once for about 5 mins, she

was around 5 or 6 at the time, I lost her at JC penny at the mall near us for

about 20 mins and had store security looking for her a couple of years later,

and neither time was she actually 'acting up' (tho she did have those moments

to).....and during this time she was also doing alot of stop, drop and plop.

Some kids have no problem staying with mom and dad, others have their own agenda

when shopping and it really makes for a hugh power stuggle, one that we decided

to avoid as much as possible for a few years. Which was better for all our

sanity. (especially mine, hehe) I really think in her case most of the time

she actually did prefer to stay home. Shopping is kinda boring for someone

who's just being dragged around from store to store. LOL

Joy

I think the best thing was taking them everywhere when they are very

young. Because they don't know any different.. It's just another part of

life like going to school.

Maureen

January 26, 2004

Nic definitely has his issues but what I " love " is when we go to church. He'll

run up to all of the men and shake hands or hug them. He makes his rounds and I

think he gets everyone. Everyone thinks it's so cute and we get the old " Isn't

he so loveable " line. The thing is, he is out of control. He takes off and total

tunes us out. Then when I grab him he flops down etc etc etc. I feel like saying

to them, spend a day at our house and see how " lovable " he can really be. LOL

Di

January 26, 2004

We were out to eat Friday night at one of our favorite little neighborhood pizza

joints, where you know everyone that comes through the door ( loves eating

there)and he showed me once again how well-mannered he can be. He always orders

his own food when we are out to eat (good habit to start early with the little

ones out there) and he ordered his usual chicken fingers and fries. Halfway

through his meal he tells me he needs more barbecue sauce and before I could

respond our waitress is at the next table and says, " Uh, excuse

me......excuse me me, Miss " and when she looked over he politely asked for more

sauce. He knew exactly how to get her attention like a young man should.

Then yesterday when he and I went grocery shopping together, he was such a great

help. He talks non-stop to me about everything I buy and is constantly checking

to see if I forgot anything if he recognizes something on the shelves that we

use and I don't stop for. I noticed for the first time yesterday how many

people who are in the aisles with us look over at us with big smiles on their

faces because they overhear our conversation and get a kick out of him. While

we check out he still asks questions and people still eavesdrop and smile at

him. I'd like to think they are amazed at how incredibly " normal " he is, but

what really made me feel good when we left was thinking about how many lives he

touched yesterday and how many smiles he brought to all their faces! I love him

to death!

Jackie, Mom to 16ds, 13, and Bradley 10

January 26, 2004

is such a nice young man! I enjoyed meeting him a couple years ago.

also orders at resturaunts - where it's at Mcs or somewhere else.

The last time we went out with just our boys, wanted ice cream for

dessert. We could not get the waiters attention. walked over to the

area by the kitchen (this is a small place - local family owned), got the

waiters attention and asked for ice cream (with a please). The waiter got a

huge smile on his face and brought his ice cream and added whipped cream

and a cherry. When he handed Tim the bill, he said the ice cream was on the

house.

The grocery store is another special place, and for the most part,

behaves well there. Many of the clerks know that does not want help

scanning groceries - and when we went to the check out lane - they had him stand

behind the counter and scan the items.

We have seen major progress with the addition of depakote. However, there has

been alot of weight gain and I have to be more careful about what is purchased.

Re: Re: out in public

We were out to eat Friday night at one of our favorite little neighborhood

pizza joints, where you know everyone that comes through the door ( loves

eating there)and he showed me once again how well-mannered he can be. He always

orders his own food when we are out to eat (good habit to start early with the

little ones out there) and he ordered his usual chicken fingers and fries.

Halfway through his meal he tells me he needs more barbecue sauce and before I

could respond our waitress is at the next table and says, " Uh, excuse

me......excuse me me, Miss " and when she looked over he politely asked for more

sauce. He knew exactly how to get her attention like a young man should.

Then yesterday when he and I went grocery shopping together, he was such a

great help. He talks non-stop to me about everything I buy and is constantly

checking to see if I forgot anything if he recognizes something on the shelves

that we use and I don't stop for. I noticed for the first time yesterday how

many people who are in the aisles with us look over at us with big smiles on

their faces because they overhear our conversation and get a kick out of him.

While we check out he still asks questions and people still eavesdrop and smile

at him. I'd like to think they are amazed at how incredibly " normal " he is, but

what really made me feel good when we left was thinking about how many lives he

touched yesterday and how many smiles he brought to all their faces! I love him

to death!

Jackie, Mom to 16ds, 13, and Bradley 10

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

January 30, 2004

Thanks for sharing Jackie. I am looking forward to those days....we've had a

couple rough ones around here lately. Incidentally, loves to order his

own food. Lately I've noticed that more often than not, the servers understand

him without looking to me to translate. He LOVES that.