Re: Decisions we make

[Guest guest]

Hi ,

I just want to say, that I feel I have been unjustly picked on, I was just

stating my opinion, my feelings, and my families feelings toward this whole

situation, I thought this whole list serv, was about understanding each other

and that you were able to ask questions, to be sure I will not ask another

question, perhaps there is guilt in your decisions and that is why you jump on

me when I just wanted to understand. You see I am lucky in that is not

a behavior problem, just a sweet happy child, who brings joy to all of our

hearts, I really don't want to feel like the big piece of poop a lot of you are

trying to make me feel like. I too have to advocate for my child, and go

through all the same feelings, but the bottom line is I WANT MY SON WITH ME, HE

BELONGS HERE AND I AND MY ENTIRE FAMILY THANK GOD FOR BRINGING HIM TO US., I

AM NOT ASHAMED TO SHOUT THAT TO THE WORLD!! Viola

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[Guest guest]

Vi,

You are absolutely correct, we should be more understanding of each other

even when we don't agree with each other or ask difficult questions. Please

don't feel you can't ask questions because that is how we all learn. Even

though we all have a common bond we are all different and see things in

different

ways sometimes. I understood what you were saying and I also understood it

was not a slight on anyone as to their own choice. You just wanted to know

what lead up to their decisions and right now in your heart you just couldn't

fathom not having your son with you. We all need to be a little more

understanding of each other's feelings and to be careful that in order to make

one

person feel better that we don't make another person feel bad. Maybe the

words could have been worded a little differently but I got what you were

saying

and I did not take it as offensive just you speaking from your heart. I too

could not imagine not having Trisha in my home especially at her age but at

the same time I also know that things can change and what I fear most in my

heart will become an actuality and that is the day when she may have to leave

my home not because I want her to but because I won't be able to care for her

anymore. I am sure all of us feel that way about all of our children but

with our special ones it is even harder. In my heart right now I could easily

say I would never do this or that but in my brain I know that I don't know

what the future holds for us and whether I would want to or not circumstances

may change but my heart will not ever change. I cannot imagine the day when

Trisha won't be there with me but I guess she cannot imagine the day when I

won't be there for her as well. It's all so scary and it really hurts to

think about it which is why we all need to be a little less judgmental and wear

our hearts on our sleeves a little less and embrace each other even when we

disagree or don't understand each other's actions. We do need to be more

supportive not with just those who agree with us but with those who may not

agree

because one day none of use will know just what we will have to be doing. As

I sit here right now, I can't imagine doing a lot of things I might have to

do in the future. I think many of us have said I would never do this or

that only to find that we did have to do this or that at some time in the

future. Sometimes feelings do get hurt but I do not think it was the

intention

of Vi to hurt or criticize, she just wanted to understand how and I can't

speak for her but just maybe in the back of her mind she wanted to know HOW in

case there came a time when she might have to make a similar decision. We all

could stand to be a little more understanding and try not to read more into

something than maybe was intended. JMHO.

Carol

Trishasmom

She isn't typical, She's Trisha!

In a message dated 11/29/2007 8:43:37 A.M. Eastern Standard Time,

ViPorier@... writes:

I just want to say, that I feel I have been unjustly picked on, I was just

stating my opinion, my feelings, and my families feelings toward this whole

situation, I thought this whole list serv, was about understanding each

other

and that you were able to ask questions, to be sure I will not ask another

question, perhaps there is guilt in your decisions and that is why you jump

on

me when I just wanted to understand.

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[Guest guest]

hi Louise, You were NOT one who made me feel picked on < I just want you to

know that, Also Irma and Carol thank you for understanding! The following

post specifically from KIM,LORI AND Karyn is what I was talking about! Viola

T>

Karyn:

I have always found this list serve to be the most supportive place

and it was very disheartening for me to see your decisions for your

child questionned. Please know that there are MANY of us who support

you unconditionally. We have no need to understand why you made the

choices you did. I find it presumptuous and foolhearty to say " never "

about any options. We, better than most, should understand that one

can't know what the future will bring and how one may have to deal

with it.

As the mother of a younger child, it is helpful to me to see that

different options work for different families.

Thank you and besI have been a member of this group for several years but do

not

respond very often. I feel compelled today to say to Karyn that I

support you and the decisions you have made with your son.

Individuals who do not have children with DS and Autism can be

judgmental and insensitive at times. On this list-serve however I

would expect nothing but support and understanding. Raising a child

with DS/Autism is the hardest thing I have ever done. I, too, chose

to have other children after our son was born with DS/Autism even

though my own mother told me that I should not have any more. I have

learned that no one has a right to judge and that we all need each

others support and prayers.

I so agree with Holly that we all have to fight for the future of our

kids and the many others with Autism. The government seems to take

away funding from those most vulnerable and unable to fight for

themselves. We are their voice and their advocates for the rest of

their lives.

The choices we all have to make regarding our kids are very

difficult. My son can not tell me what he thinks or feels and so my

husband and I are left trying to make the best decisions we can for him.

God bless us all as we continue on this most difficult journey and

give our kids what they need the best that we can.

Lorit wishes for your family,

Kim Amenabar

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[Guest guest]

Thank-you..That was beautiful and well said!

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[Guest guest]

Louise,

You truly are a blessing to each of us. I thank God for those who have

walked this walk before us. It is because of people like you that our

decisions are easier and that we have the knowledge to think outside the

norm and fight for our kids.

For all of you who have older children.....Thank you from the bottom of my

heart!

Love you all!

Holly

Decisions we make

Dear Friends,

Over the years we all make some very difficult decision for our children

when you do it from the heart you can't go wrong. Sometimes we may say I

would have done it differently if I knew what I know now. So many things

play into making our decisions each place in time.

In 's 45 years we have had to make many decisions from his birth when we

were told to place him in an institution and not to see him until we

decided. Then it was easy as there was no question in our hearts that we

wanted to bring home with his brother and sister. Sure we agreed to go

look at the state institution after we brought home but that didn't

change our mind. Even the pediatrician told us in later years he was wrong

in asking us to place .

I have learned over the years to respect the decision of each family, the

decision may not be what I would do but it was their decision. I see Amber

and Donna have the same thought as I also say never say never as I have

found times when I say I wouldn't do that and at some future time have

changed my mind.

The other thing is when our children become adults I have gone by the saying

you give your children roots and wings. When it came time for to move

out of our home it seemed like an easy transition, sure there was a tug at

the heart, but we explained just as his brothers and sisters moved out it

was his time. has flourished at different times in his life. The

important thing he is happy with both his residential and vocational

programs. The biggest difficulty is staff leaving in both programs which

affect all areas of 's needs.

Today the residential placements I do not consider putting the person in an

" institution " . The large old state institutions were called this and rightly

so but today the programs provided by agencies are in residential areas and

homes just like where we live. In Illinois one of the programs is called FLA

(Family Living Arrangement) or Host Family. This is funded under CILA

(Community Integrated Living Arrangement). The agency contracts with an

unrelated family and they go through the same background checks and

trainings that the agency requires of their employees. In this program two

individuals live with this family and the family provides all the care for

the individuals just like a family. You will also hear of other living

situations springing up sponsored by families.

When we had our other five children write something for our family book two

years ago they added something about . From who was two years

younger said, " My non-prejudice acceptance of others - from " , from his

sister four years younger than , said, " And with his love of

movies, T.V., Mcs, rubber bats, sticks and stretched out socks. You

can't help but smile when you think of him but above all that, the one who

taught me the true meaning of love and compassion. "

So as you go through your day to day lives and the difficult decisions you

have to make know that you are doing what you think is right for this

moment.

Love and Hugs to you all,

Louise, wife to Andy of almost 49 years, Mom to six, grandma to seven and

our son 45, DS, Deaf, ASD (diagnosed at age 41)

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12:29 PM

[Guest guest]

Vi you are so right in stating your opinion and feelings of your

family. We are here to understand each other and ask questions. I am

sad you thought I not nice to you I was just expressing some of the

things I have learned in my almost 75 years of life (next Feb) and 45

of those advocating for our son. I cannot even briefly think of any

time I felt guilt and you should not either in your decisions.

too was that happy go lucky child but at age 23 he was diagnosed with

severe hypothyroidism and he was treated it was then we saw all his

hormones kick in and that was the beginning of behavior challenges. I

can just see the love and joy that brings to your heart, you are

a special Mother, realize that. There is no one who can care for our

children like we do.

Louise

>

>

> Hi ,

>

> I just want to say, that I feel I have been unjustly picked on, I

was just

> stating my opinion, my feelings, and my families feelings toward

this whole

> situation, I thought this whole list serv, was about understanding

each other

> and that you were able to ask questions, to be sure I will not ask

another

> question, perhaps there is guilt in your decisions and that is why

you jump on

> me when I just wanted to understand. You see I am lucky in that

is not

> a behavior problem, just a sweet happy child, who brings joy to all

of our

> hearts, I really don't want to feel like the big piece of poop a lot

of you are

> trying to make me feel like. I too have to advocate for my child,

and go

> through all the same feelings, but the bottom line is I WANT MY SON

WITH ME, HE

> BELONGS HERE AND I AND MY ENTIRE FAMILY THANK GOD FOR BRINGING HIM

TO US., I

> AM NOT ASHAMED TO SHOUT THAT TO THE WORLD!! Viola

>

>

>

>

> **************************************Check out AOL's list of 2007's

hottest

> products.

>

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

>

>

>

[Guest guest]

Louise,

Thank you so much for your words of eloquence and compassion. I treasure your

wisdom too- it lifts the spirit and reinforces the fact that all of us are doing

the best that we can for our children, one day at a time.

Best,

Mom to , 4 yrs. old

DS-PDD/NOS

[Guest guest]

Hi Viola,

Please do not feel this being picked on, this is a normal typical

sensitive reaction on what you have been reading how everyone has been

expressing their views/opinion just like you have.

It is always a lesson for all of us when these issues/topics arise.

The wording, the choices, options, the reality,etc.

I feel this is why this group list has so much to offer coming

together with our experiences and build from it for those next steps

of action or preparation to take.

It is understandable at my end reading your post asking this innocent

question and I highly respected on why you wanted to know to why Karyn

chose this route? You are a parent also who will have strong feelings

about this for many reasons.

I have caught up to the replies and how I highly admired on Karyn's

response this was pretty brave of her to and why she started of with

on why she mention felt offended with your question, please do not

feel offended too much by it. I know easy said than done.

Let's just say, I remember when Karyn posted her challenging issues

going on, it was not easy for her entire family to make but to know

when she post about him with the updates, its nice to know how much

there as an alternative decision to make at the time for what he was

undergoing which I should stop here as it is not my place to say.

That's the hardest thing for us all as parents of children with unique

& challenging needs to face.

In my case, for the fact that my son may outlive me and never again

have the care we can provide.

When all fails need to consider the options on which route to take?

Karyn and her family are really one step ahead of some us for when

this time comes should we seek this option which I must still keep

this in mind for 's case when he ages out of the school system

and I keep aging or you just never know what lies ahead?

Why? On one step ahead here, of course with parents or caregivers

making sure that our individuals receive the specialized services

needed but it is steps towards a quality life to live as purposeful,

happy & independent life. I know it is not easy but it is a mountain

to climb when that moment hits when one wants to give up which I had 2

close calls.

During this journey many crises occurs within our family for many

reasons but you learn from it all and it continues because one still

travels on this journey.

It is difficult for a family to live with hope when we see the

national situation with limited community services.

In the meantime, what can family do?

Families need immediate options. Our children are deserving and worthy

of the basic rights and privileges of living. Until there are options

and funding to serve all, we must continue to take steps to establish

a life that our adult children or soon will be deserve.

As parents we would be the one to teach. As it turns out, we have been

the student as we do learn from our children.

So you have not done anything wrong and excuse me when I reply.

We are all here together learning the ropes on this journey.

Irma,19,DS/ASD

>

>

> Hi ,

>

> I just want to say, that I feel I have been unjustly picked on, I

was just

> stating my opinion, my feelings, and my families feelings toward

this whole

> situation, I thought this whole list serv, was about understanding

each other

> and that you were able to ask questions, to be sure I will not ask

another

> question, perhaps there is guilt in your decisions and that is why

you jump on

> me when I just wanted to understand. You see I am lucky in that

is not

> a behavior problem, just a sweet happy child, who brings joy to all

of our

> hearts, I really don't want to feel like the big piece of poop a lot

of you are

> trying to make me feel like. I too have to advocate for my child,

and go

> through all the same feelings, but the bottom line is I WANT MY SON

WITH ME, HE

> BELONGS HERE AND I AND MY ENTIRE FAMILY THANK GOD FOR BRINGING HIM

TO US., I

> AM NOT ASHAMED TO SHOUT THAT TO THE WORLD!! Viola

>

>

>

>

> **************************************Check out AOL's list of 2007's

hottest

> products.

>

(http://money.aol.com/special/hot-products-2007?NCID=aoltop00030000000001)

>

>

>

[Guest guest]

Carol, this is what I too had gathered at my end too.

Thank you for sharing your views too.

GROUP HUGS!

Irma,19,DS/ASD

[Guest guest]

AMEN!

Lots of hugs Louise, you are one of several here on the list whom I

just admire for always being there for all of us, when you always have

so much on your plate and share as a parent whose experience is very

relevant.

What have I learn through you all and others whom I have the had

pleasure hearing at conferences and workshops when this topic arises.

Totally not my wording only what I have picked up on this path.

Having a vision of the future influences current decisions, for

example, having a vision of connectedness in the future will help us

focus now on our individual's capacity to build relationships so that

he or she will have friends as an adult.

Look at what adults are doing now and if you don't like it, remember

that your child will be doing the same thing unless we all start now

to make changes. What we want is that when your child arrives at

adulthood, high quality of life will be accepted, expected, and

embedded in the service system as we know changing the system takes years.

My goals are for to be safe and have opportunities each day to

be with people who care about him, to have opportunities to learn, to

work and have fun, to have choices. Doesn't sound to unusual or

demanding, does it? But it is?

Nothing is harder than to help an adult with disabilities live a

quality life, safe and enriched, a good life.

My focus has changed as he nears 3 more years for when that school bus

stops? What's next?

It is a challenge in the past when trying to " fix " on what is going on

now but now I am focusing on his quality of life.

I picture providing that life without me in the picture. His life

after I am gone! Picture that life after I am gone, his parents, can

no longer be his advocate and friend as we age and die, such fear.

How can we provide for those qualities of life, now and when we are gone?

Best source of inspiration has been learning from you all to seek when

this fear multiplies as nears aging out of the school system.

I have also come across reading some wonderful books who many have

shared on this list or at conferences, this one was suggested.

I am currently reading this book called a " A Good Life " by Al Etmanski.

http://www.plan.ca/homepage.php

Thank you & many hugs!

Irma,19,DS/ASD

>

> Vi you are so right in stating your opinion and feelings of your

> family. We are here to understand each other and ask questions. I am

> sad you thought I not nice to you I was just expressing some of the

> things I have learned in my almost 75 years of life (next Feb) and 45

> of those advocating for our son. I cannot even briefly think of any

> time I felt guilt and you should not either in your decisions.

> too was that happy go lucky child but at age 23 he was diagnosed with

> severe hypothyroidism and he was treated it was then we saw all his

> hormones kick in and that was the beginning of behavior challenges. I

> can just see the love and joy that brings to your heart, you are

> a special Mother, realize that. There is no one who can care for our

> children like we do.

>

> Louise

[Guest guest]

In a message dated 11/29/2007 9:00:09 P.M. Eastern Standard Time,

KVanRyzin@... writes:

Viola,

As I stated in my first and only post this subject is very difficult

for me. I have only sent one post, that was in response to your

original question addressed directly to me.

I have been silent since then. Please let's move on from here and

find other positive ways to support each other rather than divide.

Sincerely,

Karyn

Karyn,

Yes, I asked you a question, you replied, I said I was sorry, and explained

myself, and a few others were very rude. I planned to move on after i said I

was sorry to you, I am still sorry that you have not accepted that. Move on

I have, now you move on...

Sincerely, Viola

**************************************Check out AOL's list of 2007's hottest

products.

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[Guest guest]

Viola,

As I stated in my first and only post this subject is very difficult

for me. I have only sent one post, that was in response to your

original question addressed directly to me.

I have been silent since then. Please let's move on from here and

find other positive ways to support each other rather than divide.

Sincerely,

Karyn

>

> hi Louise, You were NOT one who made me feel picked on < I just

want you to

> know that, Also Irma and Carol thank you for understanding! The

following

> post specifically from KIM,LORI AND Karyn is what I was talking

about! Viola

> T>

>

>

>

> Karyn:

>

> I have always found this list serve to be the most supportive place

> and it was very disheartening for me to see your decisions for your

> child questionned. Please know that there are MANY of us who

support

> you unconditionally. We have no need to understand why you made the

> choices you did. I find it presumptuous and foolhearty to

say " never "

> about any options. We, better than most, should understand that one

> can't know what the future will bring and how one may have to deal

> with it.

>

> As the mother of a younger child, it is helpful to me to see that

> different options work for different families.

>

> Thank you and besI have been a member of this group for several

years but do

> not

> respond very often. I feel compelled today to say to Karyn that I

> support you and the decisions you have made with your son.

> Individuals who do not have children with DS and Autism can be

> judgmental and insensitive at times. On this list-serve however I

> would expect nothing but support and understanding. Raising a

child

> with DS/Autism is the hardest thing I have ever done. I, too,

chose

> to have other children after our son was born with DS/Autism even

> though my own mother told me that I should not have any more. I

have

> learned that no one has a right to judge and that we all need each

> others support and prayers.

>

> I so agree with Holly that we all have to fight for the future of

our

> kids and the many others with Autism. The government seems to take

> away funding from those most vulnerable and unable to fight for

> themselves. We are their voice and their advocates for the rest of

> their lives.

>

> The choices we all have to make regarding our kids are very

> difficult. My son can not tell me what he thinks or feels and so

my

> husband and I are left trying to make the best decisions we can

for him.

>

> God bless us all as we continue on this most difficult journey and

> give our kids what they need the best that we can.

>

> Lorit wishes for your family,

>

> Kim Amenabar

>

>

>

>

>

>

>

> **************************************Check out AOL's list of

2007's hottest

> products.

> (http://money.aol.com/special/hot-products-2007?

NCID=aoltop00030000000001)

>

>

>

[Guest guest]

Dear Members,

As co-moderator, I am asking you to please consider Karyn's wishes:

" Please let's move on from here and find other positive ways to

support each other rather than divide. "

This thread is officially closed. Something that Carol brought up

that is underneath all of this, however, is EXTREMELY important, and

worthy of future conversations. I hope not just right this moment,

though!

" I too could not imagine not having Trisha in my home especially at

her age but at

the same time I also know that things can change and what I fear most in my

heart will become an actuality and that is the day when she may have to leave

my home not because I want her to but because I won't be able to care for her

anymore. "

This list is for all of us learning from one another. I hope to

continue the conversation about " what/where next " ? because time is

moving and many of us are in that late teens time.

I also think that Sara Cohen has set an excellent example in this

regard with her list about " Special Needs Housing " .

But please, let's take a little break before going on to that topic.

Hope you can all find even a few minutes to do something that is good

for your heart and soul today.

Beth 17 y/o Pete's Mum Central Ohio

>

>

> In a message dated 11/29/2007 9:00:09 P.M. Eastern Standard Time,

> KVanRyzin@... writes:

>

> Viola,

> As I stated in my first and only post this subject is very difficult

> for me. I have only sent one post, that was in response to your

> original question addressed directly to me.

> I have been silent since then. Please let's move on from here and

> find other positive ways to support each other rather than divide.

>

> Sincerely,

> Karyn

>

>

> Karyn,

> Yes, I asked you a question, you replied, I said I was sorry, and explained

> myself, and a few others were very rude. I planned to move on

>after i said I

> was sorry to you, I am still sorry that you have not accepted that. Move on

> I have, now you move on...

>

> Sincerely, Viola

>

>

>

[Guest guest]

Dear Carol and All,

It was never my intention that anyone feel compelled to leave the

list. And it appears that this has turned into a landmine. Please

note that when I wrote,

>As co-moderator, I am asking you to please consider Karyn's wishes:

>

> " Please let's move on from here and find other positive ways to

>support each other rather than divide. "

I was not saying this to take sides. I was saying this to say,

" Let's move one from here and find other positive ways to support

each other rather than divide. "

That is all I meant. I was not saying it to take sides or that

anyone who continued the conversation should leave the list.

Yes, of course this list has changed. Like any community, when there

is growth, there is change. There are now 953 members. I could not

tell you what percentage of that number is active. None of us are

able to know intimately more than a handful of members. Given the

circumstances, I am amazed at how supportive and compassionate this

group of folks is, and I don't I think we would be human if there

were not disagreements from time to time. I will still say that

usually people are respectful of differences of opinion and are able

to put things behind them and move on.

And I trust that is still the case.

I will say it again, Carol, that your point about thinking about our

children's future is perhaps the real lesson for us to take from all

of this. These are hard, life-and-death issues, and it is never easy

to discuss them. But we still attempt to do it, and we do challenge

one another in the process.

Take good care,

Beth