a different way of looking at things

[Guest guest]

I must see things in so much of a different light than others do because I

do not see my child compartmental wise. It's not only the autism they we deal

with on a daily basis, we do deal with the ds, the hearing loss, the

apraxia, sensory issues, hypotonia, low vision and the host of other issues that

is

part of her whole life. It's not one verses the other for us because they

are all a part of her make up not just one. As far as people not understanding

our lives if their child only has DS or Autism well I just don't agree with

that. Trisha has both ds and autism and as mentioned a host of other dx's

but at the same time I would not say I can always understand what some of the

other parents go through any more than if I wasn't a parent of a child with

the dual dx. I have not had to medicateTrisha to the extent that some of you

have I also realize that might change in the future but for now it's not part

of the ds/autism for us. There are also times when I can empathize very well

because I have experienced similar situations. What I am trying to say is

that you don't always have to have a child with the same dx to understand. I

met this mother of a child with DS who also happened to be born without any

legs only stubs, now honestly can any of us say we know what it's like for her

or that we have it harder than she does? So I guess you can only understand

if you fit in with the group that has the exact dx right, so my child who

has that plus others we don't fit in with the group and I couldn't possibly

understand because I'm not part of the " group " ?

What I do understand is that my child is not her disability, she has other

facets to her life other than the dx's. She is a child first and her

disabilities do not describe who she is, it's her personality and being just who

she

is that describes her which is a child first and foremost who just happens to

have more dx's than other kids and not as many as some others. Do I have it

worse or better because of her dx's? I doubt it, it all depends on how you

let it control your life and while it's tiring and frustrating and geez you

name it, at the same time it's rewarding and loving and brings many proud

moments. Do I want to hide the negative from the world? No, that is part of

who

she is, but it's not all of who she is, what about talking about all the

positives about her, what about showing pictures of that beautiful smile

instead

of an embarrassing picture of her half clothed. Why does the world want to

hear all the gory stuff and not all the accomplishments? On the subject of

no resources I can't agree with that either, there are very few that is for

sure but there are some out there and when I sit back and look at the help we

got in the beginning verses the help we are getting now, we've come a long way

but maybe sometimes we need to sit back and count our blessing before we

realized it. Of course we still have a longer way to go but look at what those

who pioneered ahead of went through with literally no resources in the

beginning. It's hard, I get tired and untired and tired again but I wasn't

promised that life in general would be easy and it isn't being single mom has

it's

own tolls to contend with in addition to the rest of it but that still doesn't

mean my life is any harder or easier than someone else's, just different.

This is not directed at anyone and is only my view point which doesn't make

it right or wrong but I think it's important that we all feel free to express

how we feel regardless if we agree or not with the majority. JMHO

Thanks,

Carol

Trishasmom

She isn't typical, She's Trisha!

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

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000000001)

[Guest guest]

Agreed, Carol.

Tori is Tori. NO matter what dx she has. She is a unique person, but she is

our's to love. I just wish people could see that we are not unloving parents.

Alot of us get just so overwhelmed at times, we need to cry out. I am

everyone's best advocate, but have alot of trouble advocating for myself.

When I made the statement that the Autism has taken over Tori's primary dx, I

was talking about us. We have been very fortunate not to have any of the

medical issues that can come along with the DS; at least, not yet. I look at it

that the DS is the medical end of Tori's dx and the Autism is her behavioral end

of it.

I just want others out there to know our kids do exist, that we need everyone's

support on both sides (DS & ASD) and that the DS is not why our children behave

the way they do.

Just my thoughts...

Liz

Liz

a different way of looking at things

I must see things in so much of a different light than others do because I

do not see my child compartmental wise. It's not only the autism they we deal

with on a daily basis, we do deal with the ds, the hearing loss, the

apraxia, sensory issues, hypotonia, low vision and the host of other issues

that is

part of her whole life. It's not one verses the other for us because they

are all a part of her make up not just one. As far as people not understanding

our lives if their child only has DS or Autism well I just don't agree with

that. Trisha has both ds and autism and as mentioned a host of other dx's

but at the same time I would not say I can always understand what some of the

other parents go through any more than if I wasn't a parent of a child with

the dual dx. I have not had to medicateTrisha to the extent that some of you

have I also realize that might change in the future but for now it's not part

of the ds/autism for us. There are also times when I can empathize very well

because I have experienced similar situations. What I am trying to say is

that you don't always have to have a child with the same dx to understand. I

met this mother of a child with DS who also happened to be born without any

legs only stubs, now honestly can any of us say we know what it's like for her

or that we have it harder than she does? So I guess you can only understand

if you fit in with the group that has the exact dx right, so my child who

has that plus others we don't fit in with the group and I couldn't possibly

understand because I'm not part of the " group " ?

What I do understand is that my child is not her disability, she has other

facets to her life other than the dx's. She is a child first and her

disabilities do not describe who she is, it's her personality and being just

who she

is that describes her which is a child first and foremost who just happens to

have more dx's than other kids and not as many as some others. Do I have it

worse or better because of her dx's? I doubt it, it all depends on how you

let it control your life and while it's tiring and frustrating and geez you

name it, at the same time it's rewarding and loving and brings many proud

moments. Do I want to hide the negative from the world? No, that is part of

who

she is, but it's not all of who she is, what about talking about all the

positives about her, what about showing pictures of that beautiful smile

instead

of an embarrassing picture of her half clothed. Why does the world want to

hear all the gory stuff and not all the accomplishments? On the subject of

no resources I can't agree with that either, there are very few that is for

sure but there are some out there and when I sit back and look at the help we

got in the beginning verses the help we are getting now, we've come a long way

but maybe sometimes we need to sit back and count our blessing before we

realized it. Of course we still have a longer way to go but look at what those

who pioneered ahead of went through with literally no resources in the

beginning. It's hard, I get tired and untired and tired again but I wasn't

promised that life in general would be easy and it isn't being single mom has

it's

own tolls to contend with in addition to the rest of it but that still doesn't

mean my life is any harder or easier than someone else's, just different.

This is not directed at anyone and is only my view point which doesn't make

it right or wrong but I think it's important that we all feel free to express

how we feel regardless if we agree or not with the majority. JMHO

Thanks,

Carol

Trishasmom

She isn't typical, She's Trisha!

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\

000000001)