To Laurie Re:Irma/Lousie/Margaret

[Guest guest]

Hi Laurie,

I am pretty sure we have chatted before. I haven't been keeping up with

emails on this group for some time, just now getting back on and reading a bit

and catching up. I live in the Capital District area. I believe you do too?

If so, I'd like to invite you again to our Down syndrome monthly playgroup. We

meet in Saratoga County once a month at someone's home. We have our own email

group where we set up dates and events that I can invite you to if you would

like. We are involved with the Down Syndrome Aim High Resourcen Center, which

is an excellent resource (www.aim-high-org). I realize that it is not really a

group for dually-diagnosed individuals, but there are several families of

children who come who are dually diagnosed and there are other families of

children with other issues as well (one family just got through chemo and

another got through valve replacement surgery with subsequent endocarditis).

Also, most families, though not specifically dually

diagnosed, do have many of the same issues and behaviors. Anyway, I thought

I'd pass along the invitation to you again. I really think you and Mic could

benefit from regular get-togethers for support, information, and play.

If you're not the person I was thinking of who lives in this area, have you

checked in to whether there are any Down syndrome or autism groups in the area

where you could get support? Again, I encourage you to go and keep going,

because even though in the beginning it feels like nobody else even in these

groups understands what it's like to have a child with a dual diagnosis, there

are some that do and all the other families there, even though their kids may

not have the exact same issues, do understand what it's like to have a child

with special needs and they are on your side as far as helping you with support

and information sharing. I find that the bond I have with other moms of kids

with DS and/or autism is extremely special and tight. They are my special

sisters and understand things we go through that nobody else can, and are

tremendous resources as well.

Also, I find that becoming friends with other families of kids with DS and/or

autism has afforded my son more opportunities playtime and his own friends, and

hopefully special lifelong friendships.

Another benefit is that siblings of children with special needs have their own

issues with having a brother/sister with special needs and so they tend to get

together amongst themselves and share and help each other out. Again, possible

special lifelong friendships there, which are important now and may be even more

important in the future when we the parents are ailing or gone. I don't know if

Mic has brothers or sisters, but my son (8-yo twin brother of the son who has

DS/PDD) has definitely benefitted from being a part of these groups.

Hugs,

[Guest guest]

Yes we live in Colonie,I am involved with the ds-resourse Center here

and Diane Lang has been wonderful to us.I work on weekends so makes it difficult

to do much. Mic goes to Crossroads Center for children in Glenville and we are

involved with them its an ABA school Mic is the only ds/asd child there and they

love him Im happy with this school.When summer is over I may not be working

wk-ends and will have more time to venture around. Thanks so much for the

invitation. I also know Dr Velvis and a few people from Aim High.Dr Velvis was

one of Mics heart surgeons.Unfortunately for me the last meeting I attended at

the resourse center I went out of there feeling extremely ackward those kids

were so far ahead of Mic I not feel like we belonged.Hes getting older now and

Im feeling better so will definately keep you in mind I appreciate your

graciousness. Laurie

To: @...: cabevizzo@...: Fri, 20 Jun 2008

22:38:59 -0700Subject: To Laurie Re:Irma/Lousie/Margaret

Hi Laurie,I am pretty sure we have chatted before. I haven't been keeping up

with emails on this group for some time, just now getting back on and reading a

bit and catching up. I live in the Capital District area. I believe you do too?

If so, I'd like to invite you again to our Down syndrome monthly playgroup. We

meet in Saratoga County once a month at someone's home. We have our own email

group where we set up dates and events that I can invite you to if you would

like. We are involved with the Down Syndrome Aim High Resourcen Center, which is

an excellent resource (www.aim-high-org). I realize that it is not really a

group for dually-diagnosed individuals, but there are several families of

children who come who are dually diagnosed and there are other families of

children with other issues as well (one family just got through chemo and

another got through valve replacement surgery with subsequent endocarditis).

Also, most families, though not specifically duallydiagnosed, do have many of

the same issues and behaviors. Anyway, I thought I'd pass along the invitation

to you again. I really think you and Mic could benefit from regular

get-togethers for support, information, and play.If you're not the person I was

thinking of who lives in this area, have you checked in to whether there are any

Down syndrome or autism groups in the area where you could get support? Again, I

encourage you to go and keep going, because even though in the beginning it

feels like nobody else even in these groups understands what it's like to have a

child with a dual diagnosis, there are some that do and all the other families

there, even though their kids may not have the exact same issues, do understand

what it's like to have a child with special needs and they are on your side as

far as helping you with support and information sharing. I find that the bond I

have with other moms of kids with DS and/or autism is extremely special and

tight. They are my special sisters and understand things we go through that

nobody else can, and are tremendous resources as well.Also, I find that becoming

friends with other families of kids with DS and/or autism has afforded my son

more opportunities playtime and his own friends, and hopefully special lifelong

friendships. Another benefit is that siblings of children with special needs

have their own issues with having a brother/sister with special needs and so

they tend to get together amongst themselves and share and help each other out.

Again, possible special lifelong friendships there, which are important now and

may be even more important in the future when we the parents are ailing or gone.

I don't know if Mic has brothers or sisters, but my son (8-yo twin brother of

the son who has DS/PDD) has definitely benefitted from being a part of these

groups.Hugs,