Re: Down Syndrome Message to Neighbors

[Guest guest]

I have never done one because we are in the country

across the street on a big hill across from our

in-laws! I think in your situation it is an EXCELLENT

IDEA!! My heart goes out to you that would be

mortifying! It happens though!

Things happen so fast and you are right if your

neighbors are not in your shoes they are NEVER going

to understand!!!

Beth Schafer(Mom to and Landon 4 1/2 years

old- both DS

--- GraI have never doneata

wrote:

> Hi,

>

> Our little Haley was able to get out of the house,

> down our driveway, on

> a state road and up over a hill before a neighbor

> was able to get her

> back to us safely. Needless to say, we are still in

> shock and horrified

> about what could have happened to our first born

> daughter. This

> occurred when there was a mishap I was attending to

> and a babysitter was

> " watching " the kids.

>

> Our twin girls, both w/DS, are both constantly

> trying to run away - no

> matter how much you board up the doors, there's

> always going to be an

> opportunity that they will find to take and get

> away. I didn't dedicate

> my life to my family to have one of them get killed

> because it's not

> humanly possible to provide 100%, 1:1 direct, close

> monitoring at all

> times with each of my children, at the same time.

>

> Anyway, I don't think this neighbor understands what

> Down Syndrome, high

> impulsivity, distractibility, and cognitive delays

> really mean. It is

> important to send out a flyer to each neighbor that

> introduces our

> family, explains what Down Syndrome & the above

> symptoms are, and have

> situational awareness if they happen to see one of

> the girls out of the

> house again without an adult present. (Maybe this

> would encourage the

> neighborhood to start a neighborhood watch, etc.)

> I'm hoping you all

> can help me come up with something. If any of you

> have already done

> one, I'd love to see it if that's ok...

>

> Thanks for any advice you have...

>

> Regards,

> Granata

> Mom to Haley & Nikki, 5 yr identical twin girls,

> both w/DS, and , 3

> 1/2 yr son

> Leesburg, VA

>

__________________________________________________

[Guest guest]

, I have the same fear as you as well. Sadie does not know how to open doors yet (thank goodness) but I have also been educating my neighbors about them since the day they were born. They always ask why is out a lot and not Sadie (this was before Sadie was walking). My neighbor across the street is from another country and she still thinks that Sadie will get "better". Even when they see out by herself (she is our escape artist) they tell her she needs to get back inside with mommy. Every teachable moment I have, I do educate my neighbors. The majority of them, even the other kids, know that if they ever see Sadie out by herself they need to walk her home immediately for she doesn't understand alot of the safety issues right now and that her and are different just like everyone is different, no 2 people are the same. They all seemed very receptive to this. As far as what have I told

them about Sadie and Down syndrome. Well, I have told them that Down syndrome is something that you are born with and it never goes away and that it causes some delays in motor and brain function (I keep the language simple for everyone's sake). I tell the kids that what they have learned to do fast and quickly (walking, riding a bike) will take Sadie a little longer and a lot more teaching but she will eventually do it and we all can help each other learn. Good luck with talking to the neighbors. The neighbors have known about my girls since they were born (we have block parties and everything and get along pretty well with the neighbors). A flyer does seem like a good idea as well as maybe an "open house" or organize your own block party where all the neighbors can come together and get to know one another some more. Good luck. Missy and Sadie (ds) will be 4 in 14

days!! Granata wrote: Hi,Our little Haley was able to get out of the house, down our driveway, on a state road and up over a hill before a neighbor was able to get her back to us safely. Needless to say, we are still in shock and horrified about what could have happened to our first born daughter. This occurred when there was a mishap I was attending to and a babysitter was "watching" the kids.Our twin girls, both w/DS, are both constantly trying to run away - no matter how much

you board up the doors, there's always going to be an opportunity that they will find to take and get away. I didn't dedicate my life to my family to have one of them get killed because it's not humanly possible to provide 100%, 1:1 direct, close monitoring at all times with each of my children, at the same time.Anyway, I don't think this neighbor understands what Down Syndrome, high impulsivity, distractibility, and cognitive delays really mean. It is important to send out a flyer to each neighbor that introduces our family, explains what Down Syndrome & the above symptoms are, and have situational awareness if they happen to see one of the girls out of the house again without an adult present. (Maybe this would encourage the neighborhood to start a neighborhood watch, etc.) I'm hoping you all can help me come up with something. If any of you have already done one, I'd love to see it if that's ok...Thanks

for any advice you have...Regards, GranataMom to Haley & Nikki, 5 yr identical twin girls, both w/DS, and , 3 1/2 yr sonLeesburg, VA __________________________________________________

[Guest guest]

Hi, Your idea about informing the neighbors about your children with ds sounds like a great idea. Running away sure must be a common thing among children with ds because of almost all the Parents that I know personally that have children with ds do run away when ever they get a chance. I'm sorry I can't help you with any suggestions. Judy & Bob Parents to 28yrs. the joy of our lives who happens to have ds and multiple disabilities Granata wrote: Hi,Our little

Haley was able to get out of the house, down our driveway, on a state road and up over a hill before a neighbor was able to get her back to us safely. Needless to say, we are still in shock and horrified about what could have happened to our first born daughter. This occurred when there was a mishap I was attending to and a babysitter was "watching" the kids.Our twin girls, both w/DS, are both constantly trying to run away - no matter how much you board up the doors, there's always going to be an opportunity that they will find to take and get away. I didn't dedicate my life to my family to have one of them get killed because it's not humanly possible to provide 100%, 1:1 direct, close monitoring at all times with each of my children, at the same time.Anyway, I don't think this neighbor understands what Down Syndrome, high impulsivity, distractibility, and cognitive delays really mean. It is important to send

out a flyer to each neighbor that introduces our family, explains what Down Syndrome & the above symptoms are, and have situational awareness if they happen to see one of the girls out of the house again without an adult present. (Maybe this would encourage the neighborhood to start a neighborhood watch, etc.) I'm hoping you all can help me come up with something. If any of you have already done one, I'd love to see it if that's ok...Thanks for any advice you have...Regards, GranataMom to Haley & Nikki, 5 yr identical twin girls, both w/DS, and , 3 1/2 yr sonLeesburg, VA

[Guest guest]

, I think I've mentioned this before on this listserv, but I bought inexpensive door/window alarms at COSTCO that my kids (even my typical boys) can not turn off. If (or should I say "when") someone forgets to bolt a door and my daughter decides to go outside, the alarm is loud enough to alert anyone inside (or nearby) the house. I will also say that, as Louisa gets older, these escape attempts occur less and less frequently -- I can't recall the last time the alarm has gone off -- but that could be partly because the bolts/alarms have taught her not to even bother... I think it also helped to make the boys follow the same rules (that they are not allowed to leave our property/house without permission), as when they were allowed some leeway, she took liberties as well (but she didn't understand the limitations they did). I did, however, have a bad scare recently. Louisa was

sitting on the front porch with our dog -- as she often does -- and agreed not to leave the porch. Usually this has worked well (I obviously check on her frequently through a window), but on this day (of course the day that I was probably a little too absorbed trying to finish an article that was due) I suddenly heard a knock on my door. It was a woman, hand in hand with my daughter. Apparently, my daughter had gone to the end of our driveway, and was sitting on our stone wall facing the cars on our very busy road! The woman had been driving by and was concerned enough to turn her car around and return to my house. I was, of course, mortified. But then I remembered that the very day before, we had all been sitting down at the road selling wrapping paper -- and one of my boys (given that we were short a chair) was sitting on the wall. The point is that I think that I sent her the message that day that it was OK

to sit on the wall -- she didn't get the "nuances" of the situation (e.g., that I was there as well, that my son was facing AWAY from the road, etc.), and I don't think she realized that what she was doing was any different from what she had just seen her brother do (without being punished). The point is to make sure that you are absolutely crystal-clear with your girls what the rules are (through both words and actions).... but, at some level, things are going to be out of our control -- and we just need to make sure they stay safe. With these alarms in place, my daughter no longer has to be watched every minute -- and I know for certain that there is no way she can leave the house without an alarm sounding. Notifiying neighbors seems like a good idea too (if you have good/understanding neighbors -- I have not), but is only part of the solution (especially if you live on/near a state road!). Also, you're definitely at a tough age with the girls -- things WILL get better (around 7 was a huge transition for Louisa)... Sheryl Granata wrote: Hi,Our little Haley was able to get out of the house, down our driveway, on a state road and up over a hill before a neighbor was able to get her back to us safely. Needless to say, we are still in shock and horrified about what could have happened to our first born daughter. This occurred when there was a mishap

I was attending to and a babysitter was "watching" the kids.Our twin girls, both w/DS, are both constantly trying to run away - no matter how much you board up the doors, there's always going to be an opportunity that they will find to take and get away. I didn't dedicate my life to my family to have one of them get killed because it's not humanly possible to provide 100%, 1:1 direct, close monitoring at all times with each of my children, at the same time.Anyway, I don't think this neighbor understands what Down Syndrome, high impulsivity, distractibility, and cognitive delays really mean. It is important to send out a flyer to each neighbor that introduces our family, explains what Down Syndrome & the above symptoms are, and have situational awareness if they happen to see one of the girls out of the house again without an adult present. (Maybe this would encourage the neighborhood to start a

neighborhood watch, etc.) I'm hoping you all can help me come up with something. If any of you have already done one, I'd love to see it if that's ok...Thanks for any advice you have...Regards, GranataMom to Haley & Nikki, 5 yr identical twin girls, both w/DS, and , 3 1/2 yr sonLeesburg, VASheryl Knapp Literacy Advocates www.LiteracyAdvocates.com Norwalk Ridgefield Fax

[Guest guest]

Hi . I'm so glad she was found o.k. We just moved to a new neighborhood and I think your letter idea is a good one. In our new house we also installed keyed dead bolts on all outside doors, so they can only be opened with a key, which is not left in the door. I just said to someone recently, that my most vulnerable time with the boys tends to be when someone else is helping and I don't feel like I need to watch everything. Seems like when there is more than one person, your guard isn't up as high and each of you thinks the other is watching.

Take care,

a

Message to Neighbors

Hi,

Our little Haley was able to get out of the house, down our driveway, on

a state road and up over a hill before a neighbor was able to get her

back to us safely. Needless to say, we are still in shock and horrified

about what could have happened to our first born daughter. This

occurred when there was a mishap I was attending to and a babysitter was

"watching" the kids.

Our twin girls, both w/DS, are both constantly trying to run away - no

matter how much you board up the doors, there's always going to be an

opportunity that they will find to take and get away. I didn't dedicate

my life to my family to have one of them get killed because it's not

humanly possible to provide 100%, 1:1 direct, close monitoring at all

times with each of my children, at the same time.

Anyway, I don't think this neighbor understands what Down Syndrome, high

impulsivity, distractibility, and cognitive delays really mean. It is

important to send out a flyer to each neighbor that introduces our

family, explains what Down Syndrome & the above symptoms are, and have

situational awareness if they happen to see one of the girls out of the

house again without an adult present. (Maybe this would encourage the

neighborhood to start a neighborhood watch, etc.) I'm hoping you all

can help me come up with something. If any of you have already done

one, I'd love to see it if that's ok...

Thanks for any advice you have...

Regards,

Granata

Mom to Haley & Nikki, 5 yr identical twin girls, both w/DS, and , 3

1/2 yr son

Leesburg, VA

Email and AIM finally together. You've gotta check out free AOL Mail!

[Guest guest]

Hi Sheryl,

Thanks so much for your advice. I remember you had mentioned the alarms

before. They're definitely something we need to look into. We do have

a security alarm and the doors/windows beep if opened, however, when the

kids are carrying on, it's hard to hear. That particular day, I was in

the garage getting stuff out of the car (unloading groceries and also

pulling out a " pee-filled " car seat -- total fun here!--) and the

babysitter was attending to the kids. Haley was able to sneak past both

of us - I thought she was watching; maybe she thought I was watching...

The garage-to-house door was open bec. I was unloading groceries to

bring into the house. The garage-for-the-car door was open bec. I knew

I needed to hose down the car seat bec. it was " floating " in urine (and

I knew I wouldn't have time to pull it apart, run the material thru the

washer/dryer, & remember how it goes back on!). That little bugger!

She moves so quickly, it's unbelievable. There are moms that have told

me that when they're older (including autistic kids), they can run away,

however to strangers, they look competent and walk like they know where

they're going, so no one raises an eyebrow bec. the danger's not clear

to them.

Thanks for showing me there's a white light at the end of this tunnel! :-)

Regards,

Sheryl Knapp wrote:

> ,

>

> I think I've mentioned this before on this listserv, but I bought

> inexpensive door/window alarms at COSTCO that my kids (even my typical

> boys) can not turn off. If (or should I say " when " ) someone forgets

> to bolt a door and my daughter decides to go outside, the alarm is

> loud enough to alert anyone inside (or nearby) the house. I will also

> say that, as Louisa gets older, these escape attempts occur less and

> less frequently -- I can't recall the last time the alarm has gone off

> -- but that could be partly because the bolts/alarms have taught her

> not to even bother... I think it also helped to make the boys follow

> the same rules (that they are not allowed to leave our property/house

> without permission), as when they were allowed some leeway, she took

> liberties as well (but she didn't understand the limitations they did).

>

> I did, however, have a bad scare recently. Louisa was sitting on the

> front porch with our dog -- as she often does -- and agreed not to

> leave the porch. Usually this has worked well (I obviously check on

> her frequently through a window), but on this day (of course the day

> that I was probably a little too absorbed trying to finish an article

> that was due) I suddenly heard a knock on my door. It was a

> woman, hand in hand with my daughter. Apparently, my daughter had

> gone to the end of our driveway, and was sitting on our stone wall

> facing the cars on our very busy road! The woman had been driving by

> and was concerned enough to turn her car around and return to my

> house. I was, of course, mortified. But then I remembered that the

> very day before, we had all been sitting down at the road selling

> wrapping paper -- and one of my boys (given that we were short a

> chair) was sitting on the wall. The point is that I think that I sent

> her the message that day that it was OK to sit on the wall -- she

> didn't get the " nuances " of the situation (e.g., that I was there as

> well, that my son was facing AWAY from the road, etc.), and I don't

> think she realized that what she was doing was any different from what

> she had just seen her brother do (without being punished).

>

> The point is to make sure that you are absolutely crystal-clear with

> your girls what the rules are (through both words and actions)....

> but, at some level, things are going to be out of our control -- and

> we just need to make sure they stay safe. With these alarms in place,

> my daughter no longer has to be watched every minute -- and I know for

> certain that there is no way she can leave the house without an alarm

> sounding. Notifiying neighbors seems like a good idea too (if you

> have good/understanding neighbors -- I have not), but is only part of

> the solution (especially if you live on/near a state road!).

>

> Also, you're definitely at a tough age with the girls -- things WILL

> get better (around 7 was a huge transition for Louisa)...

>

> Sheryl

>

> */ Granata /* wrote:

>

> Hi,

>

> Our little Haley was able to get out of the house, down our

> driveway, on

> a state road and up over a hill before a neighbor was able to get her

> back to us safely. Needless to say, we are still in shock and

> horrified

> about what could have happened to our first born daughter. This

> occurred when there was a mishap I was attending to and a

> babysitter was

> " watching " the kids.

>

> Our twin girls, both w/DS, are both constantly trying to run away

> - no

> matter how much you board up the doors, there's always going to be an

> opportunity that they will find to take and get away. I didn't

> dedicate

> my life to my family to have one of them get killed because it's not

> humanly possible to provide 100%, 1:1 direct, close monitoring at all

> times with each of my children, at the same time.

>

> Anyway, I don't think this neighbor understands what Down

> Syndrome, high

> impulsivity, distractibility, and cognitive delays really mean. It is

> important to send out a flyer to each neighbor that introduces our

> family, explains what Down Syndrome & the above symptoms are, and

> have

> situational awareness if they happen to see one of the girls out

> of the

> house again without an adult present. (Maybe this would encourage the

> neighborhood to start a neighborhood watch, etc.) I'm hoping you all

> can help me come up with something. If any of you have already done

> one, I'd love to see it if that's ok...

>

> Thanks for any advice you have...

>

> Regards,

> Granata

> Mom to Haley & Nikki, 5 yr identical twin girls, both w/DS, and

> , 3

> 1/2 yr son

> Leesburg, VA

>

>

>

>

> Sheryl Knapp

> Literacy Advocates

> www.LiteracyAdvocates.com <http://www.literacyadvocates.com/>

> Norwalk

> Ridgefield

> Fax

>

[Guest guest]

Very good point, a. That's what happened here... I miss the keyed

dead bolt locks we had in our old home. Those are great ideas too.

Thanks,

mrsimoffshore@... wrote:

>

> Hi . I'm so glad she was found o.k. We just moved to a new

> neighborhood and I think your letter idea is a good one. In our new

> house we also installed keyed dead bolts on all outside doors, so they

> can only be opened with a key, which is not left in the door. I just

> said to someone recently, that my most vulnerable time with the boys

> tends to be when someone else is helping and I don't feel like I need

> to watch everything. Seems like when there is more than one person,

> your guard isn't up as high and each of you thinks the other is watching.

>

> Take care,

>

> a

>

>

>

>

>

>

> Message to Neighbors

>

> Hi,

>

> Our little Haley was able to get out of the house, down our driveway, on

> a state road and up over a hill before a neighbor was able to get her

> back to us safely. Needless to say, we are still in shock and horrified

> about what could have happened to our first born daughter. This

> occurred when there was a mishap I was attending to and a babysitter was

> " watching " the kids.

>

> Our twin girls, both w/DS, are both constantly trying to run away - no

> matter how much you board up the doors, there's always going to be an

> opportunity that they will find to take and get away. I didn't dedicate

> my life to my family to have one of them get killed because it's not

> humanly possible to provide 100%, 1:1 direct, close monitoring at all

> times with each of my children, at the same time.

>

> Anyway, I don't think this neighbor understands what Down Syndrome, high

> impulsivity, distractibility, and cognitive delays really mean. It is

> important to send out a flyer to each neighbor that introduces our

> family, explains what Down Syndrome & the above symptoms are, and have

> situational awareness if they happen to see one of the girls out of the

> house again without an adult present. (Maybe this would encourage the

> neighborhood to start a neighborhood watch, etc.) I'm hoping you all

> can help me come up with something. If any of you have already done

> one, I'd love to see it if that's ok...

>

> Thanks for any advice you have...

>

> Regards,

> Granata

> Mom to Haley & Nikki, 5 yr identical twin girls, both w/DS, and , 3

> 1/2 yr son

> Leesburg, VA

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

> Email and AIM finally together. You've gotta check out free AOL Mail

>

<http://o.aolcdn.com/cdn.webmail.aol.com/mailtour/aol/en-us/index.htm?ncid=AOLAO\

F00020000000970>!

>

[Guest guest]

Thanks everyone for your thoughts... They really help... -

Missy wrote:

> ,

>

> I have the same fear as you as well. Sadie does not know how to open

> doors yet (thank goodness) but I have also been educating my neighbors

> about them since the day they were born. They always ask why is

> out a lot and not Sadie (this was before Sadie was walking). My

> neighbor across the street is from another country and she still

> thinks that Sadie will get " better " . Even when they see out by

> herself (she is our escape artist) they tell her she needs to get back

> inside with mommy.

>

> Every teachable moment I have, I do educate my neighbors. The majority

> of them, even the other kids, know that if they ever see Sadie out by

> herself they need to walk her home immediately for she doesn't

> understand alot of the safety issues right now and that her and

> are different just like everyone is different, no 2 people are the

> same. They all seemed very receptive to this. As far as what have I

> told them about Sadie and Down syndrome. Well, I have told them that

> Down syndrome is something that you are born with and it never goes

> away and that it causes some delays in motor and brain function (I

> keep the language simple for everyone's sake). I tell the kids that

> what they have learned to do fast and quickly (walking, riding a bike)

> will take Sadie a little longer and a lot more teaching but she will

> eventually do it and we all can help each other learn.

>

> Good luck with talking to the neighbors. The neighbors have known

> about my girls since they were born (we have block parties and

> everything and get along pretty well with the neighbors). A flyer does

> seem like a good idea as well as maybe an " open house " or organize

> your own block party where all the neighbors can come together and get

> to know one another some more. Good luck.

>

> Missy

> and Sadie (ds) will be 4 in 14 days!!

>

> */ Granata /* wrote:

>

> Hi,

>

> Our little Haley was able to get out of the house, down our

> driveway, on

> a state road and up over a hill before a neighbor was able to get her

> back to us safely. Needless to say, we are still in shock and

> horrified

> about what could have happened to our first born daughter. This

> occurred when there was a mishap I was attending to and a

> babysitter was

> " watching " the kids.

>

> Our twin girls, both w/DS, are both constantly trying to run away

> - no

> matter how much you board up the doors, there's always going to be an

> opportunity that they will find to take and get away. I didn't

> dedicate

> my life to my family to have one of them get killed because it's not

> humanly possible to provide 100%, 1:1 direct, close monitoring at all

> times with each of my children, at the same time.

>

> Anyway, I don't think this neighbor understands what Down

> Syndrome, high

> impulsivity, distractibility, and cognitive delays really mean. It is

> important to send out a flyer to each neighbor that introduces our

> family, explains what Down Syndrome & the above symptoms are, and

> have

> situational awareness if they happen to see one of the girls out

> of the

> house again without an adult present. (Maybe this would encourage the

> neighborhood to start a neighborhood watch, etc.) I'm hoping you all

> can help me come up with something. If any of you have already done

> one, I'd love to see it if that's ok...

>

> Thanks for any advice you have...

>

> Regards,

> Granata

> Mom to Haley & Nikki, 5 yr identical twin girls, both w/DS, and

> , 3

> 1/2 yr son

> Leesburg, VA

>

>

> __________________________________________________

>