Re: Stimming/ family events

[Guest guest]

Hi Ali,

Families are funny. My parents really want to be supportive, but can't seem to

make themselves actually act in a way that will build a relationship with

Darwyn. My Dad has to be spontaneous and won't stick to any set plans so

needless to say, this doesn't work. When we lived closer he'd drop by to help,

but he got itchy doing the same activities and so Dar was overwhelmed. For

holidays at my parents house there is no alteration to anything to help Darwyn,

so we don't go over as much even though we get invited. Dinner is later than

expected, breakables are displayed, and there's always a slight impatience from

my parents for him to do better. They push him to do more than he can or suggest

" if he gets hungry enough he'll eat " .

In contrast, my husbands parents have Darwyn visit twice a week at their home

and they do the same routine every time (a DVD, music and dance, an OJ popsicle

hand fed with a spoon by them, a cheese sandwich and then ice cream and then

reading books and then more music and dancing)! He loves them and loves to

visit and looks them in the eyes and signs their names. They have a beautiful

relationship and I thank God for them.

This is a longwinded way of saying that if there are not alterations made so

Darwyn can flourish, then I've found that I have to get over my guilt about

pleasing my parents and do what is right for my child. It took me a year or so

of inflicting family birthday parties etc on Darwyn to realize that things were

not going to change and that Darwyn will never like a crowd. Wow - this got long

and I hope not too whiny. My parents are great, just not perfect. Ha- makes me

wonder what my daughter will write about me one day.

Re: Stimming

She will also just walk around in circles grunting and won't look at anyone. 

She will have the occasional crying outburst but not temper tantrum style. 

Just sit down and cry and that is usually when I take her to a quiet place for

awhile.  I am more concerned about how she withdraws for days after that. 

They told me at school today she wasn't herself again.  I just hate putting her

through all that everytime we get together with family. 

>

> We had the first birthday part for my nephew on Saturday. Their house is a

little on the small side and there were about 20 kids running around all over

the place. Amy was a little out of sorts and really starting stimming again. By

stimming I mean watching her fingers over and over again, pacing back and forth,

waving her hand constantly. I took her upstairs to a quiet room to help settle

her and it seemed to work until we came back down.

[Guest guest]

 

What you described is exactly the ways things are in my life except it is my

in-laws who don't understand and make things hard on Amy and my parents who do

so much for her.  The thing that really sucks is that my parents (who are so

helpful - only other people who know how to tube feed Amy) are 1.5 hours away

and my in-laws are 5 mins.  My in-laws get so mad at me for not bringing the

kids over to see them more often.  It is just too hard for me and I don't need

that extra stress in my life.  I will try and go for family events but am

actually thinking of stopping that too.  I just feel really guilty for not

going and I need to stop worrying about what they think because they obviously

don't care that much about Amy's feelings. I need to start thinking of Amy and

what is best for her.  My husband has told his mom over and over again that if

she wants to see the " real " Amy then she needs to come and visit her in our home

where she is comfortable but

she never does.  We watch Amy with my parents and she is so comfortable and

just loves them.  Whenever they call they ask to speak to her even though she

can't speak back and she smiles when she hears their voices.  I just wished

they lived closer and I wish my in-laws could understand what they are missing

out on.

 

Routine is so good for Amy too.  I even see a difference after she is home for

a long weekend and hasn't been at school.  Then it takes her a long time to

adjust in the summer months as well!!

 

I often say that I hope my son doesn't marry a girl who will complain about me

like I do about my MIL!!  A friend of mine has a son the same age as my

youngest daughter and we always joke that they will get married one day and then

I will have to listen to my daugther talk bad about my friend!!

 

Ooops - this is a long one too!!  Sorry

Ali

>

> We had the first birthday part for my nephew on Saturday. Their house is a

little on the small side and there were about 20 kids running around all over

the place. Amy was a little out of sorts and really starting stimming again. By

stimming I mean watching her fingers over and over again, pacing back and forth,

waving her hand constantly. I took her upstairs to a quiet room to help settle

her and it seemed to work until we came back down.

[Guest guest]

Wow...it's good to know that we're not alone. In fact, it was at a family event

a couple of years

ago that I really noticed Aubrey's stimming-seeing her from my family's

perspective-and that was what actually led to the

advocacy in DOE to get the pddnos diagnosis...different environment, lots of

people talking, " rockband " contests,

etc...she will spend most of the time playing in a corner with her cousin's toys

or watching a dvd nestled in a corner

behind a rocker...she'll eat at the table with the gang and retreat to her safe

place...but I guess that is better than

pushing my niece down and having my sister-in-law scream at her etc...like when

she was younger...which I'm sure

was because she could feel that her normal cousin got all the attention. It

broke and still does, break my heart as not

much has changed over the years; Aubrey has resigned herself but I refuse to.

Shame on my family!

Reluctant visits to my brother's house during Holidays and Birthdays is

where I must be my most vigilant with Aubrey's slowly diminishing behavioral

concerns (with effective BSP) and though she is doing a wonderful job

interacting with her cousins these days when she is allowed, with the exception

of one or two of my four brothers her interaction with everyone else is

contrived, forced and the saddest thing to witness. I always thought " family "

was a haven...cruel joke...

Going to family events is like pulling teeth. I wish I could keep up with my

house enough to have them to MY space.

I, personally, think my daughter is adorable and if they only valued her enough

to learn about her and especially how to communicate with her, (learn to

understand her signing somewhat) they would be so blessed to have a meaningful

relationship with her...so as a single parent, we all go to my brother's house

and I put up with the pain of the clueless in our own family.

I feel your pain.

The greatest irony is that Aubrey knows all of her uncle's names and can

say/sign each one of them and

loves them nonetheless. And that's why I love her even more. Because SHE gets

it!

desi

 

________________________________

To:

Sent: Mon, April 12, 2010 11:17:42 AM

Subject: Re: Stimming/ family events

 

Hi Ali,

Families are funny. My parents really want to be supportive, but can't seem to

make themselves actually act in a way that will build a relationship with

Darwyn. My Dad has to be spontaneous and won't stick to any set plans so

needless to say, this doesn't work. When we lived closer he'd drop by to help,

but he got itchy doing the same activities and so Dar was overwhelmed. For

holidays at my parents house there is no alteration to anything to help Darwyn,

so we don't go over as much even though we get invited. Dinner is later than

expected, breakables are displayed, and there's always a slight impatience from

my parents for him to do better. They push him to do more than he can or suggest

" if he gets hungry enough he'll eat " .

In contrast, my husbands parents have Darwyn visit twice a week at their home

and they do the same routine every time (a DVD, music and dance, an OJ popsicle

hand fed with a spoon by them, a cheese sandwich and then ice cream and then

reading books and then more music and dancing)! He loves them and loves to visit

and looks them in the eyes and signs their names. They have a beautiful

relationship and I thank God for them.

This is a longwinded way of saying that if there are not alterations made so

Darwyn can flourish, then I've found that I have to get over my guilt about

pleasing my parents and do what is right for my child. It took me a year or so

of inflicting family birthday parties etc on Darwyn to realize that things were

not going to change and that Darwyn will never like a crowd. Wow - this got long

and I hope not too whiny. My parents are great, just not perfect. Ha- makes me

wonder what my daughter will write about me one day.

Re: Stimming

She will also just walk around in circles grunting and won't look at anyone. 

She will have the occasional crying outburst but not temper tantrum style. 

Just sit down and cry and that is usually when I take her to a quiet place for

awhile.  I am more concerned about how she withdraws for days after that. 

They told me at school today she wasn't herself again.  I just hate putting her

through all that everytime we get together with family. 

>

> We had the first birthday part for my nephew on Saturday. Their house is a

little on the small side and there were about 20 kids running around all over

the place. Amy was a little out of sorts and really starting stimming again. By

stimming I mean watching her fingers over and over again, pacing back and forth,

waving her hand constantly. I took her upstairs to a quiet room to help settle

her and it seemed to work until we came back down.

[Guest guest]

- That was not long winded it was lovely! Thank you for sharing that.

To:

From: cathynash@...

Date: Mon, 12 Apr 2010 21:17:42 +0000

Subject: Re: Stimming/ family events

Hi Ali,

Families are funny. My parents really want to be supportive, but can't seem to

make themselves actually act in a way that will build a relationship with

Darwyn. My Dad has to be spontaneous and won't stick to any set plans so

needless to say, this doesn't work. When we lived closer he'd drop by to help,

but he got itchy doing the same activities and so Dar was overwhelmed. For

holidays at my parents house there is no alteration to anything to help Darwyn,

so we don't go over as much even though we get invited. Dinner is later than

expected, breakables are displayed, and there's always a slight impatience from

my parents for him to do better. They push him to do more than he can or suggest

" if he gets hungry enough he'll eat " .

In contrast, my husbands parents have Darwyn visit twice a week at their home

and they do the same routine every time (a DVD, music and dance, an OJ popsicle

hand fed with a spoon by them, a cheese sandwich and then ice cream and then

reading books and then more music and dancing)! He loves them and loves to

visit and looks them in the eyes and signs their names. They have a beautiful

relationship and I thank God for them.

This is a longwinded way of saying that if there are not alterations made so

Darwyn can flourish, then I've found that I have to get over my guilt about

pleasing my parents and do what is right for my child. It took me a year or so

of inflicting family birthday parties etc on Darwyn to realize that things were

not going to change and that Darwyn will never like a crowd. Wow - this got long

and I hope not too whiny. My parents are great, just not perfect. Ha- makes me

wonder what my daughter will write about me one day.

Re: Stimming

She will also just walk around in circles grunting and won't look at anyone.

She will have the occasional crying outburst but not temper tantrum style. Just

sit down and cry and that is usually when I take her to a quiet place for

awhile. I am more concerned about how she withdraws for days after that. They

told me at school today she wasn't herself again. I just hate putting her

through all that everytime we get together with family.

>

> We had the first birthday part for my nephew on Saturday. Their house is a

little on the small side and there were about 20 kids running around all over

the place. Amy was a little out of sorts and really starting stimming again. By

stimming I mean watching her fingers over and over again, pacing back and forth,

waving her hand constantly. I took her upstairs to a quiet room to help settle

her and it seemed to work until we came back down.

[Guest guest]

My family has no clue and offers no support.

I try not let it get to me but it's very depressing to deal with at times.

The few times they come over most of them do not even acknowledge my

daughter. She is non verbal and just likes to sit in another room stim and

watch

Elmo. She only comes in to grab handfuls of food and stuff them into her

mouth and leave to watch Elmo. We rarely go out and usually we split up

because it's to hard to go as a family together to events. None of my sisters

or parents offer to watch Geena. The last time my sister and brother in law

watched her was 5 years ago so we could go to a disability conference and

my daughter ended up smearing poop on the carpet of my brother in laws

house.(Sigh) They haven't offered since to watch her. This is the same bother in

law I asked year before if they would be her legal guardian (plus my other

2 kids) my sister said yes but later my brother in law pulled my aside and

told me that he would only do it if we took out million dollar life

insurance policy on my daughter!

[Guest guest]

My mom sounds like your parents!!!

Her house has breakables, antique rockers on hardwood floors, five cats (several

of them feral), a dog who (unlike ours) bites gropey kids. Oh, and scratching

post trees to climb...ugh.

My dad comes to our house but is clueless about kids. He enjoys them but

doesn't understand why we can't just let them have the run of the neighborhood.

He grew up in rural Hungary. Kids sorta raised themselves...very different from

here and now!

My MIL is ok. She loses her temper with my kids a fair amount, but I can't say

I blame her. She seems to be particularly affected by their constant motion.

We never go to her house...having 4 young kids pretty much means we're not

expected to!

Sent from my iPhone

Hi Ali,

Families are funny. My parents really want to be supportive, but can't seem to

make themselves actually act in a way that will build a relationship with

Darwyn. My Dad has to be spontaneous and won't stick to any set plans so

needless to say, this doesn't work. When we lived closer he'd drop by to help,

but he got itchy doing the same activities and so Dar was overwhelmed. For

holidays at my parents house there is no alteration to anything to help Darwyn,

so we don't go over as much even though we get invited. Dinner is later than

expected, breakables are displayed, and there's always a slight impatience from

my parents for him to do better. They push him to do more than he can or suggest

" if he gets hungry enough he'll eat " .

In contrast, my husbands parents have Darwyn visit twice a week at their home

and they do the same routine every time (a DVD, music and dance, an OJ popsicle

hand fed with a spoon by them, a cheese sandwich and then ice cream and then

reading books and then more music and dancing)! He loves them and loves to visit

and looks them in the eyes and signs their names. They have a beautiful

relationship and I thank God for them.

This is a longwinded way of saying that if there are not alterations made so

Darwyn can flourish, then I've found that I have to get over my guilt about

pleasing my parents and do what is right for my child. It took me a year or so

of inflicting family birthday parties etc on Darwyn to realize that things were

not going to change and that Darwyn will never like a crowd. Wow - this got long

and I hope not too whiny. My parents are great, just not perfect. Ha- makes me

wonder what my daughter will write about me one day.

Re: Stimming

She will also just walk around in circles grunting and won't look at anyone.

She will have the occasional crying outburst but not temper tantrum style. Just

sit down and cry and that is usually when I take her to a quiet place for

awhile. I am more concerned about how she withdraws for days after that. They

told me at school today she wasn't herself again. I just hate putting her

through all that everytime we get together with family.

>

> We had the first birthday part for my nephew on Saturday. Their house is a

little on the small side and there were about 20 kids running around all over

the place. Amy was a little out of sorts and really starting stimming again. By

stimming I mean watching her fingers over and over again, pacing back and forth,

waving her hand constantly. I took her upstairs to a quiet room to help settle

her and it seemed to work until we came back down.

[Guest guest]

Oh Desi, I hear you! The only family DJ has (besides me & Dad) on my side are

my adult sons & grandchildren. My sons have always just seen DJ-a bonus kid

brother & would fuss at me if I seem to " protective " .

On his dad's side is " Grandmother " , Uncle " Horse " & 2 aunts & various

cousins-all out of state. Uncle & one little neice are the only one who ever

would try to interact with him. The others do not " get it " when they do not get

a response back & so don't try any further. Basically they then just ignore him

until we are leaving to return to our state.

Grandmother finally has stopped saying anything about DJ's inability to eat

whatever. This only took 13 years. Last few visits I stumbled upon the boy

cousins (around same ages)trying to get DJ to do something that was against the

house rules or trying to get him to say some inappropriate things.

I was furious & heartsick because DJ adores the one closest to his age. And I

hated being put in the position of telling his daddy-but I had to for DJ's sake.

So now we are both on alert & ever watchful when the nephews are at

grandmother's.

Last visit at a week long beach gathering, I heard the word " retard " in probably

every other sentence from these teens. Did not matter if DJ was standing there.

They seemed totally oblivious-like they were saying blue.

Maybe I am too sensitive but I know that I would never ever have tolerated my

bio sons using that word or any word as a slur.

The biggest irony of all is that my mama was old school socialite & could be

extremely snooty/uppity. She was not very tolerant of " different " anything. Yet

she embraced DJ unconditionally, with love, never once forgot him on any holiday

or occassion & never failed to see him only as cute human being DJ until she

died.

I wish we had lived closer for both their sakes. And I wish it didn't hurt my

heart that his real Grandmother seems to just forget all about him. And not

" get it " .

Kris

>

> Wow...it's good to know that we're not alone. In fact, it was at a family

event a couple of years

> ago that I really noticed Aubrey's stimming-seeing her from my family's

perspective-and that was what actually led to the

> advocacy in DOE to get the pddnos diagnosis...different environment, lots of

people talking, " rockband " contests,

> etc...she will spend most of the time playing in a corner with her cousin's

toys or watching a dvd nestled in a corner

> behind a rocker...she'll eat at the table with the gang and retreat to her

safe place...but I guess that is better than

> pushing my niece down and having my sister-in-law scream at her etc...like

when she was younger...which I'm sure

> was because she could feel that her normal cousin got all the attention. It

broke and still does, break my heart as not

> much has changed over the years; Aubrey has resigned herself but I refuse to.

Shame on my family!

>

> Reluctant visits to my brother's house during Holidays and Birthdays is

where I must be my most vigilant with Aubrey's slowly diminishing behavioral

concerns (with effective BSP) and though she is doing a wonderful job

interacting with her cousins these days when she is allowed, with the exception

of one or two of my four brothers her interaction with everyone else is

contrived, forced and the saddest thing to witness. I always thought " family "

was a haven...cruel joke...

>

> Going to family events is like pulling teeth. I wish I could keep up with my

house enough to have them to MY space.

> I, personally, think my daughter is adorable and if they only valued her

enough to learn about her and especially how to communicate with her, (learn to

understand her signing somewhat) they would be so blessed to have a meaningful

relationship with her...so as a single parent, we all go to my brother's house

and I put up with the pain of the clueless in our own family.

>

> I feel your pain.

>

> The greatest irony is that Aubrey knows all of her uncle's names and can

say/sign each one of them and

> loves them nonetheless. And that's why I love her even more. Because SHE gets

it!

>

> desi

>

>

>  

>

>

>

>

[Guest guest]

, You are not alone. I have a whole family full of teachers and no one

knows what to do for my son or how to handle him. No one from the family ever

offers to watch my son. My husbands old company sent us on a cruise and the only

one that offered to sit with our son was my father in law who lives 3 hours

away. He came and stayed at our house and took care of him for 3 days. Our

teenage daughter was here and could help with ideas if need be. My son was in

school just during Friday and he was here the weekend. My dad has watched him

for a few hours a couple of years ago but at 77 yrs old he really doesn't have

the strength to help him if need be. My family does talk to and my father

in law talks to him but my mother in law does not talk to him. Weird. My son

used to do fecal smearing but after I got his gut issues under control he

stopped. Does your daughter still do fecal smearing? To suggest you take out a

life insurance policy although it is needed well that was just tacky. Sorry

someone was so inconsiderate of your feelings. Cyndi B

>

> My family has no clue and offers no support.

> I try not let it get to me but it's very depressing to deal with at times.

> The few times they come over most of them do not even acknowledge my

> daughter. She is non verbal and just likes to sit in another room stim and

watch

> Elmo. She only comes in to grab handfuls of food and stuff them into her

> mouth and leave to watch Elmo. We rarely go out and usually we split up

> because it's to hard to go as a family together to events. None of my sisters

> or parents offer to watch Geena. The last time my sister and brother in law

> watched her was 5 years ago so we could go to a disability conference and

> my daughter ended up smearing poop on the carpet of my brother in laws

> house.(Sigh) They haven't offered since to watch her. This is the same bother

in

> law I asked year before if they would be her legal guardian (plus my other

> 2 kids) my sister said yes but later my brother in law pulled my aside and

> told me that he would only do it if we took out million dollar life

> insurance policy on my daughter!

>

>

>

>

>

[Guest guest]

, something I have found with families is that challenges bring out

people's trueness. Maddie is the youngest of five and we have dealt with

judgment and insensitivies from those who *love* us with ALL our kids. It's

just easier to be blatant with our kids with disabiliites. My husband and I

come from large families so we run the gamut with personality types. Some

are supportive but uncomfortable around Maddie (meaning they completely trust us

in her care), some are interactive and playful, some babysit her (even some who

are uncomfortable around her do it once in a blue moon) and some think they know

better how to care for her (meaning she should have been placed residential

YEARS ago). All of these people love us (the latter obviously in that *lost

lamb* kinda way which really means they're the arrogant ones). But their

behavior is true with every challenge my family faces, and I find myself exposed

to *opportunities* to be a better person and teach my kids that lesson as well.

Three of our five are adult children now and I find that they are watching my

husband and I even more than when they were little. Teachable lessons happen

all the time in families. I've worked SO unbelievably hard on forgiveness and

peace in my life (I had a role model in recent years tell me that if I want

peace for my family, I must be peace) and it is threatened often by

*well-intentioned* family members (one in particular irks often). The thing

that helps me keep peace is understanding where she/them are coming

from.....certainly not a whole place. The other thing that helps is being on

the same page as my husband and kids. We communicate often, vent, and move

on. All of the above are just my *techniques* for dealing.....doesn't mean

it doesn't hurt when a family member is rude and insensitive. It does.

Hugs,

Donna

> My family has no clue and offers no support.

> > I try not let it get to me but it's very depressing to deal with at times.

> > The few times they come over most of them do not even acknowledge my

> > daughter. She is non verbal and just likes to sit in another room stim and

watch

> > Elmo. She only comes in to grab handfuls of food and stuff them into her

> > mouth and leave to watch Elmo. We rarely go out and usually we split up

> > because it's to hard to go as a family together to events. None of my

sisters

> > or parents offer to watch Geena. The last time my sister and brother in law

> > watched her was 5 years ago so we could go to a disability conference and

> > my daughter ended up smearing poop on the carpet of my brother in laws

> > house.(Sigh) They haven't offered since to watch her. This is the same

bother in

> > law I asked year before if they would be her legal guardian (plus my other

> > 2 kids) my sister said yes but later my brother in law pulled my aside and

> > told me that he would only do it if we took out million dollar life

> > insurance policy on my daughter!

[Guest guest]

That is exactly what my son does. He goes and watches Elmo when we have people

at our house. Unfortunately that is not an option at my inlaws because there are

too many other kids watching the tvs. He does the same as your daughter walks

into the room for a minute, grabs food and back to Elmo.

Terry

Re: Stimming/ family events

My family has no clue and offers no support.

I try not let it get to me but it's very depressing to deal with at times.

The few times they come over most of them do not even acknowledge my

daughter. She is non verbal and just likes to sit in another room stim and

watch

Elmo. She only comes in to grab handfuls of food and stuff them into her

mouth and leave to watch Elmo. We rarely go out and usually we split up

because it's to hard to go as a family together to events. None of my sisters

or parents offer to watch Geena. The last time my sister and brother in law

watched her was 5 years ago so we could go to a disability conference and

my daughter ended up smearing poop on the carpet of my brother in laws

house.(Sigh) They haven't offered since to watch her. This is the same bother in

law I asked year before if they would be her legal guardian (plus my other

2 kids) my sister said yes but later my brother in law pulled my aside and

told me that he would only do it if we took out million dollar life

insurance policy on my daughter!

[Guest guest]

what I find hard to deal with is the weekly comments from well meaning friends

and relatives who keep asking me when I am going to put her in a home.  she is

twelve.  I wish i had a good response.  Anybody?

________________________________

To:

Sent: Tue, April 13, 2010 8:30:16 AM

Subject: Re: Re: Stimming/ family events

 

, something I have found with families is that challenges bring out

people's trueness. Maddie is the youngest of five and we have dealt with

judgment and insensitivies from those who *love* us with ALL our kids. It's just

easier to be blatant with our kids with disabiliites. My husband and I come from

large families so we run the gamut with personality types. Some are supportive

but uncomfortable around Maddie (meaning they completely trust us in her care),

some are interactive and playful, some babysit her (even some who are

uncomfortable around her do it once in a blue moon) and some think they know

better how to care for her (meaning she should have been placed residential

YEARS ago). All of these people love us (the latter obviously in that *lost

lamb* kinda way which really means they're the arrogant ones). But their

behavior is true with every challenge my family faces, and I find myself exposed

to *opportunities* to be a better person and

teach my kids that lesson as well. Three of our five are adult children now and

I find that they are watching my husband and I even more than when they were

little. Teachable lessons happen all the time in families. I've worked SO

unbelievably hard on forgiveness and peace in my life (I had a role model in

recent years tell me that if I want peace for my family, I must be peace) and it

is threatened often by *well-intentioned* family members (one in particular irks

often). The thing that helps me keep peace is understanding where she/them are

coming from.....certainly not a whole place. The other thing that helps is being

on the same page as my husband and kids. We communicate often, vent, and move

on. All of the above are just my *techniques* for dealing..... doesn't mean it

doesn't hurt when a family member is rude and insensitive. It does.

Hugs,

Donna

> My family has no clue and offers no support.

> > I try not let it get to me but it's very depressing to deal with at times.

> > The few times they come over most of them do not even acknowledge my

> > daughter. She is non verbal and just likes to sit in another room stim and

watch

> > Elmo. She only comes in to grab handfuls of food and stuff them into her

> > mouth and leave to watch Elmo. We rarely go out and usually we split up

> > because it's to hard to go as a family together to events. None of my

sisters

> > or parents offer to watch Geena. The last time my sister and brother in law

> > watched her was 5 years ago so we could go to a disability conference and

> > my daughter ended up smearing poop on the carpet of my brother in laws

> > house.(Sigh) They haven't offered since to watch her. This is the same

bother in

> > law I asked year before if they would be her legal guardian (plus my other

> > 2 kids) my sister said yes but later my brother in law pulled my aside and

> > told me that he would only do it if we took out million dollar life

> > insurance policy on my daughter!

[Guest guest]

How about, “people don’t do that anymore” and give them a look like they are

soooo passé.

I used to work on staff where we had a psychologist (PhD) level who always

used to talk about my mongoloid child. Isaac is 13 so this was maybe 12

years ago. That is what I would say to him. “People don’t use that term

anymore. The people in Mongolia didn’t like it so now we say either Down

syndrome or Trisomy 21”. He would always look at me so sympathetically

(and patronizingly!) like it was so sad I was so cranky all the time.

Lori

Mom to Isaac 13, and Tony 11

_____

From: [mailto: ] On Behalf

Of Jay Armistead

Sent: Tuesday, April 13, 2010 7:27 PM

To:

Subject: Re: Re: Stimming/ family events

what I find hard to deal with is the weekly comments from well meaning

friends and relatives who keep asking me when I am going to put her in a

home. she is twelve. I wish i had a good response. Anybody?

________________________________

From: Donna Duffey <duffey48aol (DOT) <mailto:duffey48%40aol.com> com>

To: @yahoogrou <mailto:%40yahoogroups.com> ps.com

Sent: Tue, April 13, 2010 8:30:16 AM

Subject: Re: Re: Stimming/ family events

, something I have found with families is that challenges bring out

people's trueness. Maddie is the youngest of five and we have dealt with

judgment and insensitivies from those who *love* us with ALL our kids. It's

just easier to be blatant with our kids with disabiliites. My husband and I

come from large families so we run the gamut with personality types. Some

are supportive but uncomfortable around Maddie (meaning they completely

trust us in her care), some are interactive and playful, some babysit her

(even some who are uncomfortable around her do it once in a blue moon) and

some think they know better how to care for her (meaning she should have

been placed residential YEARS ago). All of these people love us (the latter

obviously in that *lost lamb* kinda way which really means they're the

arrogant ones). But their behavior is true with every challenge my family

faces, and I find myself exposed to *opportunities* to be a better person

and

teach my kids that lesson as well. Three of our five are adult children now

and I find that they are watching my husband and I even more than when they

were little. Teachable lessons happen all the time in families. I've worked

SO unbelievably hard on forgiveness and peace in my life (I had a role model

in recent years tell me that if I want peace for my family, I must be peace)

and it is threatened often by *well-intentioned* family members (one in

particular irks often). The thing that helps me keep peace is understanding

where she/them are coming from.....certainly not a whole place. The other

thing that helps is being on the same page as my husband and kids. We

communicate often, vent, and move on. All of the above are just my

*techniques* for dealing..... doesn't mean it doesn't hurt when a family

member is rude and insensitive. It does.

Hugs,

Donna

> My family has no clue and offers no support.

> > I try not let it get to me but it's very depressing to deal with at

times.

> > The few times they come over most of them do not even acknowledge my

> > daughter. She is non verbal and just likes to sit in another room stim

and watch

> > Elmo. She only comes in to grab handfuls of food and stuff them into her

> > mouth and leave to watch Elmo. We rarely go out and usually we split up

> > because it's to hard to go as a family together to events. None of my

sisters

> > or parents offer to watch Geena. The last time my sister and brother in

law

> > watched her was 5 years ago so we could go to a disability conference

and

> > my daughter ended up smearing poop on the carpet of my brother in laws

> > house.(Sigh) They haven't offered since to watch her. This is the same

bother in

> > law I asked year before if they would be her legal guardian (plus my

other

> > 2 kids) my sister said yes but later my brother in law pulled my aside

and

> > told me that he would only do it if we took out million dollar life

> > insurance policy on my daughter!

[Guest guest]

Oh gag. How about she already IS in a HOME??!! Using a puzzled yet oh so sweet

tone & expression...

Kris -who has a smar ass side

>

> > My family has no clue and offers no support.

> > > I try not let it get to me but it's very depressing to deal with at times.

> > > The few times they come over most of them do not even acknowledge my

> > > daughter. She is non verbal and just likes to sit in another room stim and

watch

> > > Elmo. She only comes in to grab handfuls of food and stuff them into her

> > > mouth and leave to watch Elmo. We rarely go out and usually we split up

> > > because it's to hard to go as a family together to events. None of my

sisters

> > > or parents offer to watch Geena. The last time my sister and brother in

law

> > > watched her was 5 years ago so we could go to a disability conference and

> > > my daughter ended up smearing poop on the carpet of my brother in laws

> > > house.(Sigh) They haven't offered since to watch her. This is the same

bother in

> > > law I asked year before if they would be her legal guardian (plus my other

> > > 2 kids) my sister said yes but later my brother in law pulled my aside and

> > > told me that he would only do it if we took out million dollar life

> > > insurance policy on my daughter!

>

>

[Guest guest]

My MIL asks me that too. I ticks me off to no end. I tell her that the

disabled are part of the community and live home and only old people are

institutionalized.

It shuts her up for a month or so until she forgets again. 

Charlyne 

 

> My family has no clue and offers no support.

> > I try not let it get to me but it's very depressing to deal with at times.

> > The few times they come over most of them do not even acknowledge my

> > daughter. She is non verbal and just likes to sit in another room stim and

watch

> > Elmo. She only comes in to grab handfuls of food and stuff them into her

> > mouth and leave to watch Elmo. We rarely go out and usually we split up

> > because it's to hard to go as a family together to events. None of my

sisters

> > or parents offer to watch Geena. The last time my sister and brother in law

> > watched her was 5 years ago so we could go to a disability conference and

> > my daughter ended up smearing poop on the carpet of my brother in laws

> > house.(Sigh) They haven't offered since to watch her. This is the same

bother in

> > law I asked year before if they would be her legal guardian (plus my other

> > 2 kids) my sister said yes but later my brother in law pulled my aside and

> > told me that he would only do it if we took out million dollar life

> > insurance policy on my daughter!

[Guest guest]

My answer to that same query was " " Yours? " Tomorrow?? BTW ON THE QUESTION

OF wHY DON'T YOU.........my answer always was, How BOUT YOU COME SHOW ME -

WILL TOMORROW WORK/ OR GET A SITTER - ARE YOU VOLUNTEERING//

Donna - you are better at this peace stuff then I am. I just want to give

these 'helpful " people a chance to help!!

>

>

> How about, “people don’t do that anymore†and give them a look like they

> are

> soooo passé.

>

> I used to work on staff where we had a psychologist (PhD) level who always

> used to talk about my mongoloid child. Isaac is 13 so this was maybe 12

> years ago. That is what I would say to him. “People don’t use that term

> anymore. The people in Mongolia didn’t like it so now we say either Down

> syndrome or Trisomy 21â€. He would always look at me so sympathetically

> (and patronizingly!) like it was so sad I was so cranky all the time.

>

> Lori

>

> Mom to Isaac 13, and Tony 11

>

> _____

>

> From: [mailto:

> ] On Behalf

> Of Jay Armistead

> Sent: Tuesday, April 13, 2010 7:27 PM

>

> To:

> Subject: Re: Re: Stimming/ family events

>

> what I find hard to deal with is the weekly comments from well meaning

> friends and relatives who keep asking me when I am going to put her in a

> home. she is twelve. I wish i had a good response. Anybody?

>

> ________________________________

> From: Donna Duffey <duffey48aol (DOT)

<mailto:duffey48%40aol.com<duffey48%2540aol.com>>

> com>

> To: @yahoogrou

<mailto:%40yahoogroups.com<%2540yahoogroups.com>>

> ps.com

>

> Sent: Tue, April 13, 2010 8:30:16 AM

> Subject: Re: Re: Stimming/ family events

>

> , something I have found with families is that challenges bring out

> people's trueness. Maddie is the youngest of five and we have dealt with

> judgment and insensitivies from those who *love* us with ALL our kids. It's

> just easier to be blatant with our kids with disabiliites. My husband and I

> come from large families so we run the gamut with personality types. Some

> are supportive but uncomfortable around Maddie (meaning they completely

> trust us in her care), some are interactive and playful, some babysit her

> (even some who are uncomfortable around her do it once in a blue moon) and

> some think they know better how to care for her (meaning she should have

> been placed residential YEARS ago). All of these people love us (the latter

> obviously in that *lost lamb* kinda way which really means they're the

> arrogant ones). But their behavior is true with every challenge my family

> faces, and I find myself exposed to *opportunities* to be a better person

> and

> teach my kids that lesson as well. Three of our five are adult children now

> and I find that they are watching my husband and I even more than when they

> were little. Teachable lessons happen all the time in families. I've worked

> SO unbelievably hard on forgiveness and peace in my life (I had a role

> model

> in recent years tell me that if I want peace for my family, I must be

> peace)

> and it is threatened often by *well-intentioned* family members (one in

> particular irks often). The thing that helps me keep peace is understanding

> where she/them are coming from.....certainly not a whole place. The other

> thing that helps is being on the same page as my husband and kids. We

> communicate often, vent, and move on. All of the above are just my

> *techniques* for dealing..... doesn't mean it doesn't hurt when a family

> member is rude and insensitive. It does.

> Hugs,

> Donna

>

>

>

> > My family has no clue and offers no support.

> > > I try not let it get to me but it's very depressing to deal with at

> times.

> > > The few times they come over most of them do not even acknowledge my

> > > daughter. She is non verbal and just likes to sit in another room stim

> and watch

> > > Elmo. She only comes in to grab handfuls of food and stuff them into

> her

>

> > > mouth and leave to watch Elmo. We rarely go out and usually we split up

>

> > > because it's to hard to go as a family together to events. None of my

> sisters

> > > or parents offer to watch Geena. The last time my sister and brother in

> law

> > > watched her was 5 years ago so we could go to a disability conference

> and

> > > my daughter ended up smearing poop on the carpet of my brother in laws

> > > house.(Sigh) They haven't offered since to watch her. This is the same

> bother in

> > > law I asked year before if they would be her legal guardian (plus my

> other

> > > 2 kids) my sister said yes but later my brother in law pulled my aside

> and

> > > told me that he would only do it if we took out million dollar life

> > > insurance policy on my daughter!

>

>

[Guest guest]

Hi ,

Some of my family does have a clue but has never offered to watch my son. He

does not have autism and is not high maintenance. If you pop in movies or put on

the Disney station and feed him you would never hear from him for hours. He can

independently care for himself. He is capable to stay home alone for a few

hours. My older adult kids will take him once in awhile but only if I ask. I

rarely ask but only during my seasonal work schedule. I don't usually pay them

but I will give them something to order out, rent movies etc. depending on what

they have planned. No other relative has ever asked to take him although they

have asked me to take their children. I have no guilt saying no. My son would

not be living with family if something were to happen to my husband and myself.

I would be insulted at your BIL's comment but know that when I put plans in

place, I also made certain to mention that my son would be no be a financial

burden.

 

Most of the family gatherings were at my home until recently. I was doing all

the work and everyone was inviting extended family and guests. Some holidays I

was cooking for over 70 and I got smart and said no more. We spent the first

quiet Easter in years and I loved it. My son tolerates the noise for only so

long and retreats to his room. Sometimes we go to my older kids homes for BD

parties and they always put a movie on for him. He never wants to go or

stay for any length of time. He does not do well in crowds or noisey venues.

Charlyne

Mom to Zeb 17  

 

Subject: Re: Stimming/ family events

To:

Date: Monday, April 12, 2010, 10:47 PM

 

My family has no clue and offers no support.

I try not let it get to me but it's very depressing to deal with at times.

The few times they come over most of them do not even acknowledge my

daughter. She is non verbal and just likes to sit in another room stim and watch

Elmo. She only comes in to grab handfuls of food and stuff them into her

mouth and leave to watch Elmo. We rarely go out and usually we split up

because it's to hard to go as a family together to events. None of my sisters

or parents offer to watch Geena. The last time my sister and brother in law

watched her was 5 years ago so we could go to a disability conference and

my daughter ended up smearing poop on the carpet of my brother in laws

house.(Sigh) They haven't offered since to watch her. This is the same bother in

law I asked year before if they would be her legal guardian (plus my other

2 kids) my sister said yes but later my brother in law pulled my aside and

told me that he would only do it if we took out million dollar life

insurance policy on my daughter!

[Guest guest]

LOL Sara.

Donna

> My answer to that same query was " " Yours? " Tomorrow?? BTW ON THE QUESTION

> OF wHY DON'T YOU.........my answer always was, How BOUT YOU COME SHOW ME -

> WILL TOMORROW WORK/ OR GET A SITTER - ARE YOU VOLUNTEERING//

>

> Donna - you are better at this peace stuff then I am. I just want to give

> these 'helpful " people a chance to help!!