and son

[Guest guest]

Welcome and congratulations for de-lurking, ! I am so glad you found

us. I will be very interested to hear about your 's experiences. I am

also glad that you have supportive people on your lives and that they are

open to new input from you.

Have you seen the Medline website? You need to resgister to get it, and

you need a password to enter it, but it's worth it. You can do more than

just a med search- you can ask it to give you articles researching

" Risperdal and weight gain " for example. I found it helpful because if you

just do a regular web search you get too much junk in with the helpful

stuff.

http://www.medscape.com

What does do during the day? Does he work? What kind of residential

facility does he live in? How does he communicate? After our pediatrician

realized that our son does indeed have autism ( Ben is the first of

all the kids he's seen with DS to get the second dx) he told me that he's

begun to talk to parents of older kids with DS who now look back and

realize that autism most likley explains why their children seemed so

different from " typical " kids with DS.

I also wanted to tell you that I also had a sister with DS. She was born

in 1968 and only lived until 4 1/2. My parents made the agonizing decision

for her to have open heart surgery (have no idea now exactly what all her

heart complications were) and she only lived three days after the surgery.

Her little lungs gave out. She was a beautiful, brown-haired little girl

who was adored by her five older brothers and sisters. (My Mom was 43 when

she was born). I sometimes think about what she'd be doing today, how she

would love my Ben. She most likely had trisomy 21, not

translocation, since my son has trisomy 21. For years and years afterwards

my Mom still volunteered at the special needs center where Susie went for

early intervention back in 1971. My sister's life impacted us teenagers-

three out of my five sibs went on to have careers in sp.ed/human services.

When my son was born, I remember feeling relief because I " knew " DS. (My

other sis was with us when the docs gave their dx.) My dear Mum could say

to me, " I know exactly how you feel " . However, the darling alien child

that lives in this house is not a whole lot like what I thought I " knew " ,

hahaha!

, have you tried meds for that worked for a while, then no longer

seemed to be effective, and later on you tried them again, to find them

helpful for awhile?

And have you met others through the DS clinic that you think probably have

autism too? You have such a wealth of expericences for sharing! Thanks

agian for de-lurking.

Beth Mum to Ben, age 9