Way off topic

[Guest guest]

After my son was diagnosed around age 4, I would periodically have these

dreams where he was drowning in rough, choppy waters. I would be on the

bank or on a boat or a bridge, or even in the water myself - but

completely helpless to save him, and I would watch him drown before my

eyes and wake up heartbroken.

I haven't had that dream, now that I think of it, since we started the

diet. The diet has helped him so much and has given us hope. That plus

you guys on this wonderful list. I'm not alone. He's not alone. There

are good people out there, parents and other AS kids and doctors and

scientists, all working towards the goal of curing this disease, and I

beleive it will happen. It has happened for some, and even if my son

doesn't become completely cured, he has already come so far that it's

been well worth the effort. Yes, it's a struggle, and yes, we get tired

sometimes. But this child we love, his life is on the line. We don't

give up.

[Guest guest]

wrote:

And people can be so crass and

insensitive. Our head pastor, when we told him about Collin's diagnosis,

said " Well, God gives special children to special parents. " I wanted to

scream at him: I didn't ask to be special!!!

From M.:

, We're born-again Baptists here, but that remark rankles me to

this day. There is another saying I like much better: " Trials either

make

us bitter or make us better. " That one reminds me that every person has

some adversity to bear, whether I can see it or not. Those of us who

live with

" special children " often rise to the occasion (like those who join this

list)

and the experience makes us " better " but what about the group who would

never be caught dead on this list--who either try to pawn their " special

kids "

off on somebody else to raise them or else keep trying to beat their

child's

special needs out of him/her? That group only grows more and more bitter

as they

live with an ASD child and it does nobody any good to pretend that

parents

like that don't exist . . . (Off my soapbox now!). Love,

[Guest guest]

,

I know I am obsessed by this thing. I get so discouraged because just when I

think I have found the answer, something happens that kicks me down. For

example, last summer I just knew that chelation was the answer for my son.

Then after all of the testing, NOTHING. Not even using Andy Cutlers Counting

Rules from Austim Mercury list. That thing has happened for us all the way

through this. Plus, we have been doing ABA for 3 years now and have never

been able to get full hours nor qualified help. Right now I have 2 okay

therapists whose teaching skills are good but have NO PERSONALITY! So, as a

result, they aren't very good at searching for reinforcement. We keep having

the same problems with them and it is my job to deal with it. Then my

husband sits over there and asks irritated by everyone's presence while he is

trying to do his work. (Never mind that he could get up and go to library or

something.) Yes, I know exactly how you feel. I say, we leave kids and

husbands and take a road trip. Anyone up for running away?

[Guest guest]

I am ready!!! Let's GOOOOOO!!!!

Re: Way off topic

> ,

> I know I am obsessed by this thing. I get so discouraged because just

when I

> think I have found the answer, something happens that kicks me down. For

> example, last summer I just knew that chelation was the answer for my son.

> Then after all of the testing, NOTHING. Not even using Andy Cutlers

Counting

> Rules from Austim Mercury list. That thing has happened for us all the

way

> through this. Plus, we have been doing ABA for 3 years now and have never

> been able to get full hours nor qualified help. Right now I have 2 okay

> therapists whose teaching skills are good but have NO PERSONALITY! So, as

a

> result, they aren't very good at searching for reinforcement. We keep

having

> the same problems with them and it is my job to deal with it. Then my

> husband sits over there and asks irritated by everyone's presence while he

is

> trying to do his work. (Never mind that he could get up and go to library

or

> something.) Yes, I know exactly how you feel. I say, we leave kids and

> husbands and take a road trip. Anyone up for running away?

>

>

>

>

[Guest guest]

Exactly what I've been thinking- obviously children ( " special or not " )

are not just given to " special parents " . Some meet the challenge with their

whole heart, some can't or don't. And looking around it seems to me a lot

of parents haven't the skills to manage any children, let alone the many,

very many challenged ones.

Lolita

>but what about the group who would

>never be caught dead on this list--who either try to pawn their " special

>kids "

>off on somebody else to raise them or else keep trying to beat their

>child's

>special needs out of him/her? That group only grows more and more bitter

>as they

>live with an ASD child and it does nobody any good to pretend that

>parents

>like that don't exist . .

[Guest guest]

sounds like a wonderfull plan but if all of us on this group got together to

run away, guess what we would still be discussing on the road trip? LOL lisa

Re: Way off topic

> ,

> I know I am obsessed by this thing. I get so discouraged because just

when I

> think I have found the answer, something happens that kicks me down. For

> example, last summer I just knew that chelation was the answer for my son.

> Then after all of the testing, NOTHING. Not even using Andy Cutlers

Counting

> Rules from Austim Mercury list. That thing has happened for us all the

way

> through this. Plus, we have been doing ABA for 3 years now and have never

> been able to get full hours nor qualified help. Right now I have 2 okay

> therapists whose teaching skills are good but have NO PERSONALITY! So, as

a

> result, they aren't very good at searching for reinforcement. We keep

having

> the same problems with them and it is my job to deal with it. Then my

> husband sits over there and asks irritated by everyone's presence while he

is

> trying to do his work. (Never mind that he could get up and go to library

or

> something.) Yes, I know exactly how you feel. I say, we leave kids and

> husbands and take a road trip. Anyone up for running away?

>

>

>

>

[Guest guest]

, , Everyone...

When pity me days take a hold I think of the moms that had the diagnosis 40

years ago and had their kids taken away and they went thru therapy.

Then the moms 15 years ago convinced there was another issue - biomedically.

And all the hard work these parents did before us. Our road is easier than

their road was...

This helps me keep going and of course you guys and my family...

A jeffs mom

[Guest guest]

That was a really nice letter. I feel the same way too. At first it is so

overwhelming and I mean at least the first 6 months. Some days I cry and cry

and some days I just cherish that he shows me that he loves me as much as I

love him. I have also lost friends but I don't have time to worry about

someone who cannot accept what I am doing for my son or accept my son. He is

wonderful and I will help him until my dying day. If it was not for this

group I would definitely be a loon ball. Talking to other people who are

going through the same thing and who are not judging you or your child makes

a world of difference.

I also send you my friendship and prayers

MA

[Guest guest]

I do believe that God chose me to be 's mom. I don't know anyone right

now who would've gone the route I have gone with him. I accept what I have

and I know it's made me a better person and see things in a different light.

Believe it or not it could be worse. Imagine those parents out there who are

trying to save their child from a life threatening illness. I would much

rather have what I have now than to not have it at all. It is tough and I

cry all the time but I'm also happy alot that my son has progressed as much

as he has. It's definitely not a punishment, I think it's a great gift that

you are able to do what you do to make a difference in your childs life

because unfortunately alot of parents don't have the patience for what we do.

Cheer up, someday you'll receive what you deserve.

MA

[Guest guest]

>

> On a related note, though, has anyone else had their religious

beliefs

> shaken to the core by autism? I find myself spending a great deal

of my time

> being angry with God for not healing my son and allowing so many

people to

> suffer. Then I feel bad about that and go back to hating the big

> pharmaceutical companies.

Funny this subject should come up. I too had a hard time dealing with

how God could do this to us and that I didn't want to be given this

problem. I started thinking about God and fate and I came up with

this theory. Life is chaotic - bad things happen for no reason. I

think where God comes into the picture is that you are given the

tools you need to handle the bad stuff. I don't think that the bad

stuff is inflicted on you to test you or because you didn't pray

enough or didn't go to the right church, I think it is just random.

But, I do believe that timing is everything. When all of this

happened to us we were pregnant with our second child and my parents

were living very far away from me. Just before diagnosis they

discovered that they didn't want to buy into the area they were

renting in and then got kicked out of their rental because the owner

changed his mind about renting his house. They then chose to move

closer to us into another rental. Then we got the diagnosis and they

bought a house 5 minutes away. Timing....

Also, because of all that we have learned we have chosen not to

vaccinate our baby girl - we had been trying to have a baby for over

a year with no success, then magically I was pregnant. Then we got

diagnosis, had time to do our research and made our decision about

vaccination - if we had been able to get preganant when we first

wanted to, our baby would have been fully vaccinated and perhaps we

would have had bigger problems. Timing...

All of you on these lists I subscribe to - there have been times I

have questioned one thing or another and damned if I didn't find the

answer from you wonderful people.

I often times ask " why me " but I guess the question really is " why

not me " it's not that we are specially selected to go through this,

we just drew a short straw. But I do believe that the resources are

out there for us and that is God's hand in our lives. We have a lot

of power together and for that I am thankful.

Anyway - yes I had a crisis of faith too, but I decided that I could

see other ways God was working for me, and not against me.

I hope my little story helps somebody out their to look at things a

little differently.

Keep the faith.

Moira

mom to Vico (ASD 4) and Culzean (10.5 months)

[Guest guest]

In a message dated 3/25/01 4:05:17 AM Pacific Standard Time,

singingpraise@... writes:

> Our head pastor, when we told him about Collin's diagnosis,

> said " Well, God gives special children to special parents. " I wanted to

> scream at him: I didn't ask to be special!!!

>

YES!!!! I'm willing to buy the sentimental stuff about the special people

who raise these special kids, I've met some amazing parents....BUT I " M NOT

ONE OF THEM!!! God understood that and gave me a regular healthy little baby

boy; Then the vaccinations, the antibiotics etc came along and now here's

this very special boy with a very ordinary ( with sometimes less than

ordinary energy and patience) mother.

I read " When bad things happen to good people " nine years ago when our first

little boy died. And I agree with the author that God doesn't " give " us these

troubles, he's just available for support in coping with the day to day

realities. I just wish I would remember to ask for His help a bit more often.

It couldn't hurt, might help!

End of Rant...Thanks for listening and understanding. I feel better for

finally saying this to someone.

Cherri

[Guest guest]

Moira and all,

I love that " bless your pointed head " : I'm going to remember that one :-)

I have really enjoyed reading everyone's posts about their spiritual journeys

with their children and autism. I, too, feel that it is no accident that I have

a child with an ASD. I have spent my professional career working with children

with special needs and in recent years, children with ASD (I'm a speech

pathologist). However, even that doesn't make me feel exceptionally qualified

for this " job " and I feel as though I am muddling along every day, hoping and

praying that I am doing the right things. I have been blessed with a family

that seems to understand the situation and with friends who care and help (many

of them are special educators like myself) a lot. I have never had a doubt that

God has a purpose for my life and for my son's life, even if it isn't the

purpose I expected before we learned of his special needs.

I, too, feel a special kinship with all of you..it's the peer group I don't have

anywhere else. Thank you all for all the help and support you give. I'm in a

place I never thought I would be, but I thank God that I have you all to share

the ride with me. I'll get off my soapbox now ;-)

Fondly,

J--mom to Graham (6 yrs, probable Asperger's syndrome) and Hayley (10

yrs, mild ADD)