Re: Wishing it away?

May 10, 2000

I kind of feel the same way as Beth. I wouldn't wish the DS away, because

it happened at birth. But I sometimes wonder why I couldn't have kept the " just

DS " boy that I was given. I would take away the autism, because I knew

before he was autistic. I miss that little boy.

I've struggled with this question for a long time, ever since he was diagnosed

autistic. We had this discussion on another list, and I said I wouldn't take

anything away, because it would change the child. But wants to know how

to play with other kids. He's so eager to please that he does what he thinks

(from his distorted view of their behavior) that the other kids want from him.

It's usually wrong. I feel so embarrassed for him sometimes, because he is

trying so hard. I remember being a kid and the kids that tried too hard to be

your friend, and I feel sorry for . He does have a few friends that accept

him as he is, but they are all much younger.

Yes, I would keep the DS, but I'd jump at a cure for the autism.

May 11, 2000

In a message dated 5/10/00 10:52:14 PM Eastern Daylight Time, paul.3@...

writes:

<< It's funny, when we were kids, my sibs and I would talk about whether we

wished my baby sister Susie (DS) didn't have it, if we had that power. I

think I remember us all saying we loved her just the way she was, that she

wouldn't be Susie if she were different. We just didn't want her to be so

sick. >>

Ya know MB, I love hearing you talk about your sister---specially since

Maddie has 4 sibs. When Maddie was first born, this was a HUGE concern for

me...however, not for DH. He grew up in a very large (8 kids) and very

committed family, so his thoughts were...so...life deals you cards. He did

however, cry a lot for me......and for Maddie. I cried a lot too, but cried

a heck of a lot more during the on-set of autism.

Where is your sister MB?

<<Of course, (DH) said deafness would be fine, and

I said DS would be fine with me. I felt that CP or a kid who was medically

involved would be really difficult, as would a kid with mental illness. >>

Yes, this is interesting I think. I remember a discussion I had with a mom

whose son was in a Mom/Tot class with us when they were both about 2. This

was prime time autism on-set and life was just hell for us. 's son

had Dandy Syndrome, was blind, couldn't walk, talk, or sit up (he was

definitely MR, but she refused to see that part), has two shunts in his head

for hydrocephaly, has severe seizure disorder AND PKU. He had terrible

behaviors, like scratching his cornea, but has the sweetest personality.

I've NEVER heard the kid cry and neither has his Mom btw. He was also their

only child and he was conceived via in vitro. I always felt so so bad for

her. One day we were having a heartfelt talk and I came right out and asked

her if she knew a prognosis for her son. She told me that the longest a

person with DW ever lived was to the age of 25. In the very next breath, she

went on to say how bad SHE felt for ME,,,,because Maddie had MR (LOL),

possibly autism (of course, she does) and that I'd have to deal with this

forever...to my death. I'll tell ya, it felt like a slap in the face for me.

Just goes to show ya, huh?

Donna

May 13, 2000

In a message dated 5/10/00 9:52:01 PM Central Daylight Time, paul.3@...

writes:

<< I guess I pray for things like being able to take him to

church (I'm pretty disappointed, if not downright angry, that God hasn't

seemed too concerned about THAT one.) >>

Beth, I sure can relate to this! The most recent sting was a few weeks

ago when all her Catholic 2nd grade friends made their first communion. It

was a tough day for me. Hang in there -- it's got to get better someday,

Maureen

May 13, 2000

On Sat, 13 May 2000 18:12:23 EDT MRASMUS@... writes:

>

> Beth, I sure can relate to this! The most recent sting was a

> few weeks

> ago when all her Catholic 2nd grade friends made their first

> communion. It

> was a tough day for me. Hang in there -- it's got to get better

> someday,

>

> Maureen

>

Maureen,

Matt made his first communion last year, he was actually in 1st grade,

but was 8, and had been to CCD and Catholic Schools all his life. For all

the school year, he went to " private " CCD with just him and a teacher,

and she did the preparation program. When it was time, the DRE (director

of Religious education- not a Priest) decided that Matt was not ready. I

informed her that he was as ready as he would ever be, and he was going

to do this. We took him to our old parish across town and where all the

rest of my kids made their first communion. We had a private, family

gathering, he received communion at Sunday Mass, and doesnt' do it any

more. He gags, LOUDLY, every time he tries, even with a small piece, so

we just don't do it anymore.

Does she go to CCD? Have they said anything about her recieving the

sacraments. I can find the Cannon Law that says our kids DO get to

participate at this level. Email me privately if you want.

Sara,

What about Bar Mitzva for Elie? If you dont' mind, how does the Jewish

religion treat our kids? I hope better than Christians, overall.

S

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May 13, 2000

The people in mthe synagogues I have had dealings with either refuse to deal

with Elie - he might disrupt the decorum of the place, or are so solicitous as

to be nauseating. (I don't know how you cope...poor child, GAG). We belong to

a very small synagogue of wonderful warm people. They have offered to help me

get Elie ready for his Bar Mitzvah. Elie has however, refused to cooperate on

any level. He will attend services and participate only when he feels like it.

2 weeks before the time we had picked for him to be presented as a Baar Mitzvah

he developed a phobia about entering the synagogue. For the next 6 months he

sat in the cloak room! Now he has started entering the sanctuary with us. I

haven't totally given up on the idea, but it isn;t real high on my hierarchy of

needs. BTW, in Richmond < VA there is a spec needs religious school (Elie

attended there when it was one class) I believe it is up to three classes now.

Elie's 3 classmates celebrated their Bar/Bat Mitzvah last year. I wnet and was

determined to do the same for Elie, but I find that alone, I haven't the

strength.

Sara

>>> stolzfamily@... - 05/13/0 7:50 PM >>>