Im new here,am grandmother to RSS 2yr.old boy

[Guest guest]

My grandson, lives next door to me. His parents are wonderful

with him. They also have a little girl who is 4 mos. old. I can very

easily see why they are always tired and overwhelmed. I also have a

13yr. old granddaughter and a 1yr. old grandson, Lane who live with

me(from a different family). Lane has fetal alcohol syndrome, so we

spend several days a week in therapy. I kept the other grands last

night and am wiped out this AM. stayed up till almost 2:00,

then slept briefly--was up again by 4:00 for a while, then slept about

an hour and was up again. By 8:00 I called his parents to come get

him, as Lane was up now and had to be fed,per G-tube. has most

of the things that go with RSS, including quite a few on the rare

list. He also gets a lot of therapy and we have most of his and

Lane's scheduled at the same time,so I usually take both of them.

has more than a hundred trophies, all kinds of crowns, placques,

medallions, and savings bonds from pageants--local, state, and

national titles. He is a cut-up, show-out and loves the stage. The

audience always loves him. He blows kisses, flirts, etc.--is a little

blue-eyed blonde. He is also often irritable and demands his mom's

and my constant attention. When he was 14 months old he tested to be

at the mental level of a 3yr. old. He can't speak well at all--but

does a great job of communicating!! Does well with sign language. I

think there is something being missed physically about his speech. He

tries very hard to say everything and his speech therapist is

great--but for some reason he is just unable to. He is such a

joy--and such a job!! Enough of our history--I want to hear from

some of you. Grandma Fran

[Guest guest]

Hi, Grandma Fran, and welcome to our group. It sure sounds like

is getting all the love and support that he needs to thrive

and be a terrific young boy as you described. He is so lucky.

I am one of the older moms on the listserve. My son Max is 15.5

years old. He is in 9th grade at our local high school, but in

special ed classes for most of his day. It's not that he is really

limited in his intelligence, rather he is limited by extreme anxiety

that prevents him from performing to his potential. The anxiety has

put him the hospital many times because his stomach is the first to

react. He does have severe gut dysmotility, which only adds to the

complications. But everyone loves him, the older kids look out for

him and he just kind of does his own thing. I do wish he had

friends, though. Max prefers to be alone and do his own stuff. If

someone wants to tag along, that's fine, but if not, that's okay,

too. We always have said, " Max is a man on a mission. "

Max, too, is somewhat limited in his ability to use language and

that affects every part of his life. He has been in psychotherapy

for years now and his psychologist has really helped him get in

touch with his feelings and open up. He does forget the names of

things and has to learn to get around that stumbling block. While

his language deficiency is not as severe as 's, you will find

that there are several parents of RSS kids who report that their

kids have difficulty with language and use sign language to

supplement. I'm a special education teacher, so I believe firmly in

that. As a matter of fact, I'm going to sign up for a course in

learning sign language to help me communicate with my kindergarten

students. (I teach Language and Learning Disabled kindergarten.)

So, that is Max. There is so much more to tell, but I think I have

touched on the most imoportant/relevant issues he faces for now. We

have been through a lot with him since birth and yet we have a

really great teenager on our hands. Sometimes, I admit, it is

trying, though, with all the doctor appointments, the anxiety, the

physical stuff that pops up, but there are so many friends I have

made on this listserve that they help me through when I need it.

Again, welcome. Oh - have you joined the MAGIC Foundation? Go to

www.magicfoundation.org and you will read all about it. We have an

RSS/SGA division that is the best. There is even a convention in

Chicago every July and hundreds of us gather together. It's like a

family reunion every summer!

Jodi Z.

One of severl Jodi's on this listserve

[Guest guest]

Hello Grandma Fran,

My name is Pat, and I am G-ma to . turned two on Dec 21st. I

have 4 kids. is 23, athan ('s dad) is 21, is 17 and a

senior in high school, and Kaity is 14 and in the 8th grade. I have two

g-kids, Aidan is 3.5 ( is her mom), and , as I said, is two now.

has come a long way in his short two years. He was born at 39 weeks

gestation, weighing 3# 5oz, and measuring just 15 " long. He was always

difficult to feed, and at 8.5 months, weighing only 8#, we finally decided

to go the g-tube route. At two, he is still 100% g-tube fed, but has caught

up on most of his mile stones, so he's doing really well. We spent most of

last winter in the hospital, and this year, although he's had several nasty

colds, we avoided the hospital all together, a fact that delights us all!

LOL

Welcome to the group! You'll find that everyone here is informative,

supportive, and friendly. It's nice to have another g-parent join us. There

are a few of us here on the list serve! LOL

Pat (g-ma to , RSS, 25 months, 20# 5.6oz, 29.1 " , Prevacid, Singulair,

GT)

[Guest guest]

Hi grandma fran!!

welcome to the group, it is very supportive and informative!!! i am

one of the other jodis on the list except mine is spelled with an ie

at the end. i am mom to nicholas age5 nonrss, christopher age 3 rss

(will be starting ght in a couple of weeks) and johnathon age 7 1/2

months nonrss. christopher is currently waiting to start ght (we

need the taining first for the shots) he attends nursery school 2x a

week and the elementry schools preschool disabled class 2 afternoons

a week. i can relate to be tired and overwhelmed!!! hope you get a

lot of info from us , feel free to ask anything. and again welcome.

jodie

ps if you can post a pic, we would love to see him!! also check our

kids out, there seems to be alot of blondies(including mine)