Re: OT: having a hard time as son gets older

July 8, 2003

,

I know how you feel. Yesterday my son (who will turn three this Sunday) was

formally diagnosed with Autism. I thought I was prepared, but as soon as I got

into the car the tears just started flowing. Thankfully my son was asleep b/c I

don't know if I could have held back the tears until we got home. My husband

was in shock/denial. It's like a part of me knew it but another part of me

hoped the doctor would say it was something else. I worry about his future -

will he be able to live on his own, fall in love, get married, have children,

have a career, be self-sufficient? Will he be picked on in school and

ostracized and have his feelings hurt all the time? He is so sweet and so

affectionate. At this stage, I don't think he realizes there is anything

different about him and I see how some of the little kids look at him at the

park or at gym class when he tries to talk to them and its just baby jargon. My

heart just breaks for the hardships that lie ahead for him. People can be so

cruel. A part of me wishes he could just stay 3 forever and I could take care

of him and shelter him from everything bad in the world. I worry about my

daughter and what financial & /or emotional burden she may be left with when me

and my husband pass away. Anyway, you're not alone. I guess everyone has

their highs and lows. Yesterday was a very sad day for us, but on Sunday we're

having a Blue's Clue's Birthday Party! :-) Hang in there! KIM

OT: having a hard time as son gets older

Hey all. I'm just having such a hard time lately and my support group no

longer meets so I'm hoping I can just " vent " a little here or perhaps find

out that there is at least one other person who feels as I do.

My precious Sammy is going to be 4 next month and I am having such a hard

time these days. First let me say that he has made progress this past year.

If I look back to where he was this time last year, I probably wouldn't

recognize him and I am very happy with that....the thing is, I guess I had

my hopes up that he would have made greater gains this year. When he was

younger, his developmental delays just didn't seem as bad b/c so many kids

develop at different stages. But now that he's getting older, the

differences between where he is in relation to where NT children are at this

age are just getting much more pronounced. I know I know, I know, you should

never compare children but it's so hard when I get together with friends who

all had children around the same time, or worse, later than me. It's hard

not to look at how advanced their children are.

Now I find myself getting depressed and sinking back into that dark place of

" is this as good as he's going to get " and " what's going to happen to him " .

I try so hard to stay away from that place b/c I know you have to take it

one hour at a time but sometimes that just gets so hard and I find myself

looking ahead....

I suppose the fact that I'm PMSing and getting ready to move to a new state

in a few weeks doesn't help. Nor does the fact that Sammy had 3 weeks off

from school and is having a hard time adjusting and that he's been having

some real bad days. I had myself convinced that he was on the mild end of

the spectrum but now I'm thinking differently. I mean he's almost 4, still

mostly nonverbal although he tries so hard (breaks my heart that I cannot

understand him), can't suck from a straw, can't blow bubbles and WILL NOT

try any new foods.

He is so beautiful and I love him so much but I HATE the fact that

everything is so HARD for him. It just breaks my heart. It just isn't fair

that this has happened to our children.

OK, I've taken up enough of your time. I hope to find a support group or

good therapist when I move but in the meantime, am I the only one to go

through these dark phases? I'm guessingf I'm not. How do you allcope with

these feelings?

Thanks for listening. I'm going to go have a good cry now. Maybe that will

help.

July 8, 2003

You sound like me a few months ago when my son, Jake, was turning

four. You are not alone in the way you feel. I find it much easier to hang

around other families with special needs kids these days...PMSing does

not help the situation any. Find a group in your new location ASAP!

Remember also that our kids have their cycles of ups and downs...

keep your chin up and your sights on the up times!

OT: having a hard time as son gets older

> Hey all. I'm just having such a hard time lately and my support group no

> longer meets so I'm hoping I can just " vent " a little here or perhaps find

> out that there is at least one other person who feels as I do.

>

> My precious Sammy is going to be 4 next month and I am having such a hard

> time these days. First let me say that he has made progress this past

year.

> If I look back to where he was this time last year, I probably wouldn't

> recognize him and I am very happy with that....the thing is, I guess I had

> my hopes up that he would have made greater gains this year. When he was

> younger, his developmental delays just didn't seem as bad b/c so many kids

> develop at different stages. But now that he's getting older, the

> differences between where he is in relation to where NT children are at

this

> age are just getting much more pronounced. I know I know, I know, you

should

> never compare children but it's so hard when I get together with friends

who

> all had children around the same time, or worse, later than me. It's hard

> not to look at how advanced their children are.

>

> Now I find myself getting depressed and sinking back into that dark place

of

> " is this as good as he's going to get " and " what's going to happen to

him " .

> I try so hard to stay away from that place b/c I know you have to take it

> one hour at a time but sometimes that just gets so hard and I find myself

> looking ahead....

>

> I suppose the fact that I'm PMSing and getting ready to move to a new

state

> in a few weeks doesn't help. Nor does the fact that Sammy had 3 weeks off

> from school and is having a hard time adjusting and that he's been having

> some real bad days. I had myself convinced that he was on the mild end of

> the spectrum but now I'm thinking differently. I mean he's almost 4, still

> mostly nonverbal although he tries so hard (breaks my heart that I cannot

> understand him), can't suck from a straw, can't blow bubbles and WILL NOT

> try any new foods.

>

> He is so beautiful and I love him so much but I HATE the fact that

> everything is so HARD for him. It just breaks my heart. It just isn't fair

> that this has happened to our children.

>

> OK, I've taken up enough of your time. I hope to find a support group or

> good therapist when I move but in the meantime, am I the only one to go

> through these dark phases? I'm guessingf I'm not. How do you allcope with

> these feelings?

>

> Thanks for listening. I'm going to go have a good cry now. Maybe that will

> help.

>

July 9, 2003

> My precious Sammy is going to be 4 next month and I am having such a

hard

> time these days.

I am sorry you are having a hard time. I have those days also. I

just posted this message on my local board [maybe you can find a local

board for your new area] which was addressing the question posted by

someone " what was the most effective biomedical intervention you have

done " , so not exactly the same issue as your message here, but you

might find something here to help you.

~~~~~

I can't give you info on testing, because when I was looking for a

doctor a few years ago, none of them would consider accepting my son

as a patient, because of his dx. So I had to learn everything myself,

by trial and error. Everything I have done with him has been OTC.

My son was a very low functioning Kanner child. He was not really a

diet responder because he did not tolerate basically any foods. HNI

enzymes helped tremendously during that time.

It has been four years since his diagnosis, he is age 7 now. He no

longer qualifies as autistic, altho still severely language delayed,

expressive about age 2yo, receptive about age 3yo. Recently he has

made some amazing progress and he is writing words! I use a VB/DTT

approach with him with difficult concepts, otherwise we just sit at

the table [he and his brother] and I teach them like a typical

preschool setting.

The most beneficial intervention I did was chelation. It is upsetting

to me to realize just how metal toxic he must have been. We have

completed 72 rounds of ALA chelation and I still see major improvement

after each round. Now, the only foods he can eat only in moderation

are eggs, corn, and rice, and he cannot have any preservatives or

artificials. These food issues are getting better as chelation is

progressing [he can have small amounts of those items now, except

preservatives/artificials, every few days and not have problems]. I

don't have to use enzymes any more except with certain supplements. I

recently adjusted some supplements and he has made another major leap

in cognition. It is very nice to see.

When my son was dx by Dr. [name] at age 3-1/2, she said his " best "

prognosis was a group home, if we were lucky, but more probably an

institution. Now, his " worst " prognosis is the group home. He has a

chance to be independent.

You can read my son's story here, if you want.

http://www.danasview.net/myson.htm

There is hope for even the lowest functioning children who did not

regress but were born this way, my son is just one example.

Good luck in finding what your child needs.

Dana

July 9, 2003

> Hey all. I'm just having such a hard time lately and my support

group no

> longer meets so I'm hoping I can just " vent " a little here or

perhaps find

> out that there is at least one other person who feels as I do.

Hi , I have been having a hard time lately too, and my son is

much older than yours. Just wanted you to know that you are not

alone. One thing that helps me is to just spend some time alone with

my son, doing something he enjoys, to remind me what a great kid he

is, and remind myself that I am doing the best I can. ((((()))

Lynne in VA

July 9, 2003

I am really very sorry things are so difficult right now. I can completely

understand and I have been there myself. We've had such good moments recently

that perhaps for many it seems " not so bad " ( like for my husband). But I recall

many dark moments, and I have never been so grateful that children must ride in

the backseat, because as we left many a Doctor's office, swim lesson,

playground, therapy session, family get together, I would cry on the way home,

and did so freely because ph couldn't see me. My husband left for military

duty for a year, and when he left I thought I'd lose my mind. We'd just gotten

the official diagnosis of autism, celiac's, and IGA deficiency. But, I can

honestly say, it was easier, with him gone. Some may say, no one to lean on, I

can say, no one to fight with ( is the Doctor right, wrong, is this therapy

right, or wrong, is the diet right or wrong, etc.) Some may say, no second

opinion, I can say, no one to try and convince ( no father wants to believe

there is something horribly and devastatingly wrong with his child). Some may

say, no relief of the parenting responsibilities, I can say, I devoted as many

hours a day and night as I chose to ph and his ABA therapy, my research, our

bonding. There was no one at 2am rolling their eyes at me as I read something

new that struck home. When Dr. Goldberg said he could cure ph if he had what

he thought he had, I was excited. When the test results came back positive, I

cried so much I soaked a dish towel. Just sank to floor and sobbed. It was

wonderful, all those black moments in my memory where ph was rejected, my

parenting criticized, ph was in pain, and desperately trying to communicate

with me, they were nothing compared to the black moments to come, with age. I

was now given the hope back that ph would date, have sex, get married, my

dreams for him slowly became a possibility again. You see, right now your child

has You. And You are the most important person in his life. I can only

encourage you to do what worked for me. Use that chronic desperation gnawing at

the pit of your stomach to motivate yourself to get to the bottom of this, use

your occasional anger to prompt some talking back to those so called experts

when they condescend to your parental observations and suspicions about what

might be wrong. Use your painful memories to chart a clear history, because

there is someone somewhere who will one day read what you wrote and say " oh

this sounds like... " .The autism of today is not the autism of yesterday. Every

child is different, so the parent is forced to wade through tons and tons of

research to find out where their child fits in. The reality is, there is hope.

It's a roller coaster ride, and the highs are really high ( that first I love

you from your child, or the first time they interact with another child) and the

lows are really low ( they've bruised your heart and body with their meltdowns).

These babies are telling us something and I encourage you to have faith that God

gave all of us enough strength to figure it out. Sign language helped us

communicate before he became verbal. Not knowing much about your child's medical

issues or history, I can only pray for you. Perhaps if you could share your

child's history or the current things you are doing to help, perhaps there are

other parents who have " been there done that " and can share what worked for

them. Yes, the differences between the neurotypical kids and ours become more

pronounced with age, it has strained many a family and friend relationship for

us, but anytime you want to vent, feel free to e-mail me. There are many on this

message board that helped me through many dark moments. ---- Original Message

-----

From: Colnes

; Gfcfkids

Sent: Tuesday, July 08, 2003 6:48 PM

Subject: OT: having a hard time as son gets older