Re: Remember us? and son .

January 31, 2007

Hi

Wow! Now that's a success story! I hope you'll stay for awhile, so that

we may

all benefit from 's (and your) accomplishments.

I, particularly, would love to know some of the details behind establishing

's home.

(And I know I'm not the only one).

Can't wait to hear more!

in Ma. daughter , 21 yrs old, graduating Perkins this spring.

January 31, 2007

Wow, where to start?? It has been quite some time since I have

visited the site or posted. is now 31 years old. His turning 30

made me feel older than my turning 50..LOL For those of you who

don't know our History, I'll give a little catch up info. was

institutionalized at infancy. He never went home with his biological

parents. We found him when he was 4 and began the long process of

getting him out of institution. He came to live with us at the age of

51/2 and we finalized our adoption just a month after his 6th

birthday. has involment in all 6 areas. He has profound hearing

loss, is blind in one eye with holes in vision of good eye, a high

arch sub-mucus palate, undesended testicles (which were not sugicaly

brought down till he was 6) He had surgery to repair double aortic

arch at infancy, some nerves were nicked during surgery which caused

stomach and respitory problems. His stomach was divided to by-pass

problem area. At the time he came to us he was not walking on his

own, was in diapers, had feeding tube, knew only a few words in sign

and was the size of a 2 year old.

Our goal when was growing up was to give him as normal a

childhood as we could. We tackled medical problems in due course

while trying not to overwhelm him. He attended a hearing impairment

classroom till the age of 17 at which time he chose to attend a deaf

school. We did not secure any assistance from our MHMR agency until

was 19 years old. When he graduated from Scranton School for

the Deaf we made arrangments through Blindness and Visual Services

for him to attend Helen Keller Nathional Center. He was there for 11

months. They gave the recommmendation that he would always need

assistance in living within the community.

That's were the dream of 's home began. He wanted to live with

other friends who were deaf and if someone was going to work in his

home than they had to be deaf also or know how to sign ASL. It took 6

years to make the dream a reality but now he has lived his dream for

5+ years. He lives with friends Debra and Greg. They are family but

each has their own endevors. works 2 days a week at a grocery

store in the produce department. He has a cat named Chubby. He takes

part in Specail Olympics (horseback riding, swimming, bowling). He

belongs and takes a active part in the PA Deaf Association. His home

is different in that they are all deaf and have created an extended

family which includes all the staff and their families. It's not

unusual to find staff with their spouses and kids visiting or taking

part in holiday parties. Throw us parents in the mix and it's one big

happy family.

I don't know how many older CHARGE kids are on the list. If not I

just wanted to keep in touch and give everyone a glimpse of 's

happy life. I am so proud of him and what he has accomplished.

Thanks for being here.

January 31, 2007

SO GREAT to hear from you and about 's home and his life. I've missed

you guys.

Try and stay in touch!

www.chargesyndrome.info

>

> Wow, where to start?? It has been quite some time since I have

> visited the site or posted. is now 31 years old. His turning 30

> made me feel older than my turning 50..LOL For those of you who

> don't know our History, I'll give a little catch up info. was

> institutionalized at infancy. He never went home with his biological

> parents. We found him when he was 4 and began the long process of

> getting him out of institution. He came to live with us at the age of

> 51/2 and we finalized our adoption just a month after his 6th

> birthday. has involment in all 6 areas. He has profound hearing

> loss, is blind in one eye with holes in vision of good eye, a high

> arch sub-mucus palate, undesended testicles (which were not sugicaly

> brought down till he was 6) He had surgery to repair double aortic

> arch at infancy, some nerves were nicked during surgery which caused

> stomach and respitory problems. His stomach was divided to by-pass

> problem area. At the time he came to us he was not walking on his

> own, was in diapers, had feeding tube, knew only a few words in sign

> and was the size of a 2 year old.

>

> Our goal when was growing up was to give him as normal a

> childhood as we could. We tackled medical problems in due course

> while trying not to overwhelm him. He attended a hearing impairment

> classroom till the age of 17 at which time he chose to attend a deaf

> school. We did not secure any assistance from our MHMR agency until

> was 19 years old. When he graduated from Scranton School for

> the Deaf we made arrangments through Blindness and Visual Services

> for him to attend Helen Keller Nathional Center. He was there for 11

> months. They gave the recommmendation that he would always need

> assistance in living within the community.

>

> That's were the dream of 's home began. He wanted to live with

> other friends who were deaf and if someone was going to work in his

> home than they had to be deaf also or know how to sign ASL. It took 6

> years to make the dream a reality but now he has lived his dream for

> 5+ years. He lives with friends Debra and Greg. They are family but

> each has their own endevors. works 2 days a week at a grocery

> store in the produce department. He has a cat named Chubby. He takes

> part in Specail Olympics (horseback riding, swimming, bowling). He

> belongs and takes a active part in the PA Deaf Association. His home

> is different in that they are all deaf and have created an extended

> family which includes all the staff and their families. It's not

> unusual to find staff with their spouses and kids visiting or taking

> part in holiday parties. Throw us parents in the mix and it's one big

> happy family.

>

> I don't know how many older CHARGE kids are on the list. If not I

> just wanted to keep in touch and give everyone a glimpse of 's

> happy life. I am so proud of him and what he has accomplished.

>

> Thanks for being here.

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

January 31, 2007

I plan to to be an active member and am willing to share any

experience or information I have. 's house has been a very high

profile home within PA MR system. I have become a mentor to parents

here in PA and actively volenteer with PA Protection Advocacy. I am

so grateful about 's life, helping is the least I could do.

mom to (31)

-- In CHARGE , mdlinda@... wrote:

>

> Hi

>

> Wow! Now that's a success story! I hope you'll stay for

awhile, so that

> we may

> all benefit from 's (and your) accomplishments.

> I, particularly, would love to know some of the details behind

establishing

> 's home.

> (And I know I'm not the only one).

> Can't wait to hear more!

> in Ma. daughter , 21 yrs old, graduating Perkins this

spring.

>

January 31, 2007

Thank you for sharing your story. So many of us have young children (my son is

19 months) and it is difficult to comprehend the future. is certainly a

blessed man to have found such wonderful, loving parents. That's amazing! May

I ask how you learned of him initially? I am just in awe of your giving, open

spirit...so wonderful!

Also, how would you feel if I posted your story on my blog? I think it might

help family and friends to see that our children can find fulfillment and

happiness. I totally understand if you would rather not too! My blog is

maxupdate.blogspot.com

Thanks!

Amy and Max

artthrobgracie10 wrote: