Hello, guest
[ Original Post ]
Hi my name is Karen Schimpf,

My autistic son Cliff is 20 yrs.old now.

I'm looking for parents who have been
in the trenches for awhile now.

Some days we sail through the day.
Other days our knees buckle and the
day won't end until the early A.m hours.

I was hoping this could be a place where
we could soar and thud...together...no judgement.

I invite you to join in and share your stories,
so we can form a support... where you'll hear...
...You got him to do what?...where did you find
that?... Will you share that data with me?...
...I'm proud to know you!...Thanks for listening! etc.

Up till now my husband and i have had
no one to talk to (for 20 years).

Since i've found this site,
i find myself drawn each day... hoping
for a response. Please join in.

Gratefully, Karen Schimpf
Your Name


Your Reply here

Name: Kim Mori | Date: Jul 28th, 2006 2:10 AM
Hi Karen!
I'm from Australia and I too have a disabled son Todd he is nearly 13yrs old and a hand full already, but I'm very proud to be his mother!
Todd had a bleed in his brain some time just before birth, so we were fully aware of his brain damage when he was 4 days old! He suprised everyone and still is today, he's a good looking boy and he's happy and healthy!
And this is my story!
"Twinkle, Twinkle Little Star" How I Wounder, Who You Are!!!
On the 31st of October 1993 at 3.17am another star was born and his name is Todd!
Nothing happened how it should of and that was very frightening, not knowing what was happening to me or my baby!
Todd was born by an emergancy ceasa due to type 2 dips in very early labour, his heart rate was dropping to 80-60 beats per minute so we were told of possible reasons for that, none of which were good for our baby! After 2hrs of getting to the hospital, I became a mother for the first time!
I recall going into the operation rooms and they'd just been freshly painted in purple and pinks and I thought to myself "thats a sign, the baby is going to be a girl"! Well, I woke asking about my baby, first was it a little girl and the answer was "no, you have a very sick little boy"! After I got out of recovery I was taken to my room where some of my family were waiting to see me, that was very emotional seeing my husbands face, my sisters eyes and my mothers tears! I didn't know what to say, so I just cried and waited for someone to tell me! I was in so much pain, I couldn't move anything without it hurting all over my body! The nurse took a photo of Todd and bought it in to me so I could see my son for the first time and she explained to me what all the machines and leads/cords were for, she said to me "you've got yourself a little fighter"! Todd was on many machines to save his little life and one by one, day after day they started to be taken off him ,as he got stronger and stronger!
3 weeks old Todd came home and his theaphy started with massages, music and early intervention, physio, OT, hydro, speech, hearing,vision, Dr's, meetings, pre-school, school etc!
Basicly everything is still the same as when he was a baby, he needs 24hr supervision, still in nappies, still needs to be fed, still needs full assistance getting dressed, is harnest in the car with a buckle cover so he doesn't get/fall out of the car, he is strapped into his wheel-chair so he doesn't get/fall out, his bedroom door is locked from the outside so he can't get out during the night and hurt himself or worse, we have locks and keys everywhere in and around our house and families houses and school too! This is how we live day in day out and things don't seem to change much at all in our lives and I gather this is pretty much what the rest of our lives are going to be like! And I'm OK with that, now ,and really only recently have I become like that! I find life too hard to fight with everyone, for everything, all the time, for things that Todd needs to live a happy and healthy life and be apart of society!
I think it's very hard for others to see our children like we do, someone once said to me "it's all about getting to know him" and it is, it's that easy! But most people don't want to know and that's really, really sad to think that they are missing out on a once in a life time experience to be touched by a star!
The song "Twinkle, Twinkle Little Star" is Todds favorite song, he attemps the star with his fingers and tries to sing by humming and saying "lar lar lar" in tune, of course!
Twinkle, twinkle little star how I wonder who you are!!

Name: cheryl m | Date: Jul 28th, 2006 1:29 PM
hi karen, your son is older than mine. Dan is nearly 13 and is very isolated. he is very bright and he knows he is very different than other children. We have had many problems and I worrie for nhis future. My main concern at the moment is how to find him someone of a similar age too talk to. 

Name: George B. | Date: Jul 30th, 2006 4:58 PM

I went back to my email and found the regestry confirmation and can now get in. I will email you the address and you can try that. GB 

Name: George B. | Date: Jul 30th, 2006 6:40 PM
Sun July 30,2006 2pm

Hi Kim from downunder,
How I wonder,
How are you doing...this day?

I was delighted to hear from you,
from so far away!

It sounds like you have had alot on
your plate and many of us know
exactly what you are going through!

How is your Little Star Todd today?

What kind of school does he go to?

What does he like to do in his free time?

Our son lives in his room and watches
vcr tapes, plays computor games, plays
music cd's and at 21, almost 22 just started
singing songs (now this is someone who
speaks in one or two words). When I heard
him belting out a song, word for word, on
perfect pitch, I ran and brought my husband
and we stood outside his door... amazed at
hearing his wounderful voice!!!!

If you asked us if we thought our son
would ever sing at the top of his voice,ever,
we would have stated ...never. Well never
say...never! We are delighted beyound words.

Write back whenever you can Kim.
I would love to exchange stories about
our amazing boys!

Gratefully,Karen Schimpf 

Name: George B. | Date: Jul 30th, 2006 10:46 PM
Sunday, July 30 2006, 6:30pm

Hi Cheryl, It's me KAREN SCHIMPF,

I don't know what happened but when I tried
to respond to you I couldn't get through. I was so
upset I called my brother in n.y. and when he tried,
he got through on my site, but now it has his name
GEORGE B. Until I get it fixed Everyone will have
to find me under his name.

I was so thrilled you took the time to write

Did you happen to see Kim from australia
has a 13yr.old son as well. I don't know if
her son Todd can type on the computor
but when she reads this, maybe your sons
can form a friendship.

Yes I agree with you , our sons need to feel
they belong, just like everyone else!

I love the fact that at this safe site, we can
shout out our concerns, (for our children) into the universe,
and maybe...just maybe...someone will hear
us and lovingly write back!

How is your Dan doing?

Let us know what he likes.

Please write when you can

Gratefully, KAREN SCHIMPF 

Name: Kim Mori | Date: Jul 31st, 2006 12:48 AM
Hi Karen!
That's great news about Cliff, I can picture you and your hubby standing out-side his bedroom door! What song was being sung by Cliff at the time of your enjoyment?? Special, very special!
Todd has been in respite for a week but he comes home this afternoon, so we'll wait and see how he is then!
Todd attends a "support unit" for disabled children at our local public school, he has 5 other kid's in his class of similar age and disabilities and along with that they have a teacher and an aid! Todd gets 2hrs a week vision and hearing one on one program at school with a specialised teacher!
Todd is like a 2yr old in a 12yr old's body so he still likes to do baby things, like getting into everything, doing things he shouldn't be and still insists on one- on- one at all waking hours!
Todd plays with musical toys, books and his theaphy dog "Harry"! But he is never too far from your side!
Good to hear from you, can't wait to hear from you again Karen!
Cheers Kim! 

Name: George B. | Date: Jul 31st, 2006 7:35 PM
Monday July 30,2006 3:30pm

Hi Kim it's me KAREN SCHIMPF,

I know most songs, but never had heard the
one Cliff was singing.We marked it on the calendar.

Wow, how was that having Todd away for
a week? Has he ever been away that long
before? How did like being away?

Cliff is between 5 and 7 years old mentally,
alittle boy trapped in a big boys 22yr old body.
He hates having hair and tries to shave his
face until he bleeds. He hates it when teachers
say," your a big boy!" He says, (even though he's
6ft. tall,) "I'm not a big boy... I'm not a big boy!"
I let him know "I hear you Cliff", for the boy I see,
watches sesame street each morning before
he goes to school and skips when he's happy!

What t.v. shows do you get for your son in australia?

Well I have to run and make dinner.

What time is it there when it's 3:30pm here?

Write when you can,Gratefully, KAREN SCHIMPF 

Name: Kim Mori | Date: Jul 31st, 2006 11:39 PM
Hi Karen!
It's 9.15am on the 1st August, where has the year gone???
Todd doesn't watch TV or play sony games or anything like that, but he loves to listen to music! We have all kinds of music and he like to make music as well, so we have a guitar, bongos, tambarine and his Aunty's have lay-byed a key board(organ) for him for his birthday which is in Oct!
Because Todd has so many disabilities is why we get as much respite as we do, plus I fight pretty hard to keep our family together and Todd out of full-time care too! Well we are just starting a new 3month respite plan which will consist of week on week off, he'll be at home for a week and then go to respite for a week, WOW! I've been fighting for it for 5yrs and it's finally paid off, I never say never!
He has been away for 2 weeks at a time before normally in school holidays, his respite is a host family who take Todd into their home as part of their family, and he loves them and they love him too! It's great!
Cheers KIm! 

Name: KAREN SCHIMPF | Date: Aug 1st, 2006 5:00 PM
TUES. AUG.1,2006 1PM












Name: KAREN SCHIMPF | Date: Aug 1st, 2006 5:26 PM
TUES. AUG 1,2006 1:25PM


[email protected]


Name: KAREN SCHIMPF | Date: Aug 1st, 2006 5:29 PM
TUES. AUG 1,2006 1:25PM


[email protected]


Name: Kim Mori | Date: Aug 1st, 2006 11:24 PM
Hi Karen & Family!
We've heard on the news that it's bloody hot over there, I hope you guys are ok, hey!
Yes I am married, we seperated for a few years due to the stress of having Todd I guess, but things are pretty good now and Andrew(hubby) has realised that this is it, and that we need him to help us to keep Todd out of full-time care! Sometimes I think we are more like soul-mate then husband & wife, Andrew didn't know what to do and how to fix it, so he use to just drink and I'd had enough and left! But a few years apart made us both realise that it wasn't just about us anymore and we put our differences aside so we could care for our boys!
We have 2 boys Todd 12yrs old and Matty who just turned 11yrs old, both are very different in looks, Todd has my side of the family looks which are dark hair, dark skin and brown eyes and Matty has Andrews side of the family looks which are fair hair, fair skin and blue eyes!
Family Support, What Family????
Well my family support isn't too great but my 2 sisters have both got 4 kid's of their own and my parents are hitting their 70's so they are too old, so that leaves Andrew parent's which are younger then mine but still in their late 50's early 60's, they take the boy's sometimes for a week-end when their not working, that is! I have one sister who tries to help and she is good for a chat and a laugh but no one really knows what to do with Todd, so they don't look after him at all! What about your family??
Yes it is our winter here, but it's not really cold, it's been raining for a few weeks on and off, which is great for all our farmers! But the days are pretty nice, abit chilly in the mornings and late at night but other wise not too bad!
I'll email you a photo!
Cheers Kim! 

Name: KAREN SCHIMPF | Date: Aug 2nd, 2006 6:23 PM
WED AUG 2,2006 2:30 PM

Hi Kim,

I can see why this takes it's toll on
a family, did you know 50% ,that is
one out of two parents, walk away,
yah this is not for the weak of knees!

I'm happy that you remain soul mates,
because you can get done what needs
doing, in behalf of both your beloved sons.

The both need the love of each of their parents,
no matter where you each live.
In fact sometimes you can get even more
acomplished, apart.

Funny you say Todd with his dark hair and
eyes and Matty with his fair hair and eyes,
thats my siblings and I, Half of us have
dark hair and eyes(like my dad) and the
other half light skin and green eyes(like my mom)

I guess I'm Andrew's parents age,
I'm 60, my husband 63. We have three kids,
1) Lena 41 has Kyle 21,Travis 20,Tyler 12.
2)Tammy 36 has Chris 18,Mike10,Austin 8.
3) Cliff 21

Our children are very busy with their own kids
and the problems they have. Lena lives in the
same town as we do, but she was divorced
last summer and has her hands full her 3 boys
and no dad to round the corner each night!
She's overwhelmed each and every day!!!!

Our daughter Tammy and her husband live in
Fla. She too has her hands filled with 3 boys,
We rarely see them but she calls and tries
to support by listening to me vent.

But in the flesh support... it's not there. All our
friends have gone away.
Even programs set for Cliff lack the funding,
so it's like we've been under house arrest for the
last 21 yrs.

That is why we are thrilled to talk to you!
You know exactly how hard our day and night
is and you can use the hug as well!

Can Todd talk?
Does Todd speak?

I tried to go into my mailbox and now I
can't. I'll have to see what's wrong with that
now, everything seems to be breaking,daily!

Write when you can.

Gratefully, KAREN SCHIMPF 

Name: KAREN SCHIMPF | Date: Aug 2nd, 2006 7:23 PM
Wed Aug 2,2006 3:25pm

Hi Kim,

Loved the picture of your handsome boys!
Thanks for sharing it!


p.s. check your e=mail I wrote you an
e-mail on your home site. 

Name: Cathleen | Date: Aug 8th, 2006 6:11 PM
Hi Karen:
My son Jack is 18yrs old and very autistic. He watches telatubbies and barney. Spends hours in the bathtub.The summer is almost over and he will be return to school - we live in South Florida and they keep him in school till 21.
The main thing I find is to keep them busy. Either in school or
in groups set up by local charities. They have programs for
the adults. I guess we are all in it for the long haul. Someone once told me to pick and choose your battles with these kids and that's what we do. Let alot go by and just pick on one thing at a time. 

Name: KAREN SCHIMPF | Date: Aug 12th, 2006 1:13 AM
FRI AUG 11,2006 9:25 pm

Hi Cathleen, Welcome!

How is Jack doing today,Cliff has
2 more days left of summer school,
next mon and tues.

So you've been watching telatubbie's and
Barney for a long time now and your Jack
loves the bathtub as much as our Cliff!
We had to limit it to 3 times a week because
of our water bill(he likes the water right up
to the very top of the tub!!!!

Can Jack phy. speak?
Does Jack speak?

Do you have any other children?
If so how are they coping?

You are right... keep them busy...
pick your battles...and take one day at
a time! When I fail to do that...I get
overwhelmed and rundown.

Again welcome, write when you can


Name: JAN | Date: Sep 4th, 2006 5:49 PM
Dear Karen,

This is my first time in a chat room and you are already the second person I am responding to. I should have done this a long time ago. My son, Andrew, is 29 and I have been through the trenches. My goal the last couple of years has been that no one get hurt. Well, that and a life free of police intervention. My son didn't start acting out until he was about 18. Now I wish the super nanny was big enough to make him go the the naughty spot!!!!!! Andrew has lived in a group home about a mile from me for the last year. Things are better, but there are still big problems. I'm not sure if I have any good advice for anyone. But go ahead and ask anything, because I know about those days when your knees buckle and you think you can't take anymore. Thank you for reaching out with your post. This feels good.


Name: KAREN SCHIMPF | Date: Sep 4th, 2006 8:45 PM
MON SEPT 4,2006 440pm

Hi Jan,

You've been in those treanches 7yrs longer
than we've been, HOW HAVE YOU DONE IT?

The group home, one year ago must have been
tramatic....please tell me each step /

example: A) one year ago:what was the deciding factor?
B) Who do you tell next/ his case worker?
C) How did you pick the home?
D) What was the cost?
E) How did you mentlly prepare?
F) How did you prepare Andrew?
G) What did work in that transzition?
H) What would you do differantly?
I) What do you think of my spelling?

I'm asking because it's been on my mind and
I'm thinking of what I need to do,
in the not so distant future and would be
so very grateful to you for your advice (having already
walked there)

I'm very glad to meet you Jan

Gratefully, Karen Schimpf 

Name: JAN | Date: Sep 8th, 2006 3:36 AM
Hi Karen,

Andrew's aggressive behavior started in his late teens. It was gradual but definately became worse each year. At first there would be long periods of Andrew behaving of what I like to think of as the real Andrew. A couple of years ago things got so bad that he was the king of the house. My daughter and I would lock our selves in our rooms many nights to avoid him. When he was in a bad mood, there was no talking to him. He would ask the same questions over and over without my answers seeming to register. He did hit me with his fist a few times. He would always just hit once and then seem stunned that he had done it. Andrew has been on and off all kinds of psych meds. He has been diagnosed with a mood disorder. Sometimes it's hard to tell the difference between a spoiled brat and a mood disorder. Is he bipolar? Definately autistic. Probably Aspergers. So you can see why he couldn't live at home anymore. We had always talked about a group home and I wanted one close to home so he could continue to be a part of the family. My daughter and I had to write letters to the state telling how bad things were. And they really were. I used to hide all the knives under my bed. You must be wondering how I could still care what happened to him. Maybe you do know. Andrew can also be the most fun loving, relaxed, funny person.
Well the state finally agreed to fund a group home. The cost is astronomical if you try to pay yourself. I have a good job and there is no way I can afford it. I had a really difficult adjustment to him not living at home. Andrew is still having a hard time. We've changed his meds recently and I'm hoping for better days. There is a behaviorist that works with the organization that runs the group homes and she is wonderful..She is hoping someday there will be a group home with just Autistics. I can't even remember what you asked now. Andrew lives with four other guys in the group home. Three of the others are also high functioning, but they aren't autistic, I'm wondering if things really can be better for Andrew. He used to love to do things with friends and lately he doesn't even care. His problems seem too complicated for anyone to sort out. Even though things aren't going well for Andrew the last few months, I must say that others in the group home seem very happy. It is just a big home and they do have very caring staff. They go out together and do a lot of things. I always worried that I was being selfish in thinking about a group home for Andrew, but my daughter one time said she thought Andrew deserved to have his own life and did I ever consider that I was holding him back!!!!! Hope I've answered some questions. Please feel free to ask.


Name: KAREN SCHIMPF | Date: Sep 10th, 2006 5:09 PM
SUN SEPT 10,2006


It looks like you have alot on your plate and I
understand what it is like to live with anyone who
has a mood disorder, all that up and down, never
knowing what's rounding the corner, right?

Your daughter is right, your son needs to grow way
beyound what he could in your home and develope
a life of his own, whatever that will be.

I've heard from another person, who's son had
to enter a group home, that the only mistake she
made, was not insisting the home be set up for
autistic clients only and once she did insist on it,
everything was finally straightened out. I was grateful
for that data and will use it in the not so distant future.

I write Curtis on this site under AUTISTIC ADULT
his son is your son's age and I've been telling him
about 30-50% of autistic children develope seizures.
We didn't know that-did you? (please read what we
said today)

Well I have to run, Cliff's starting his last year of school
and I have to get things ready.

Have a great day and write when you can

Name: Kell | Date: Oct 19th, 2006 3:42 PM
Hi Karen!
My name is Kelli and I have also been in the trenches awhile, my son Bo, is sixteen now. Low functioning - autistic.

It is so great to be able to communicate with others who really know how it is.

My son's behaviors seem to cycle? he will be fine for a few weeks then look out! he starts by being more verbal (no words) then lots of laughter, then obsessively wanting to eat, then loud outbursts with hyperactivity. This behavior is so not who he is.
He is normally so good natured, laid back and affectionate.

I was wondering if anyone else has seen these cycles of behavior?

Thanks for being here.


Name: KAREN SCHIMPF | Date: Oct 21st, 2006 5:39 PM
SAT OCT. 21,2006 1:30pm

Hi Kell and Bo,

Very nice to meet you.

Bo sounds like Cliff. He is happy and affectionate
until he goes into an .....EPISODE!!!!!!!!!!

Please go to' Autistic Adult' at this site and read what
I said: 7-24-06

Maybe the data will surprise yet help you.
It was news to me and we've been doing this

Let me know what you think...o.k.


Name: utahchicky | Date: Jan 20th, 2007 7:07 AM
Hello Karen, I am a mom of a 40 year old with this problem plus T.S. I just joined today by chance and realized after so many years I too needed someone to chat with. I read some short storys today of off this site and came to the conclusion that maybe i cloud help in some way. i kept my daughter at home till she was about twelve. she became more violent each year. finally cloud not handle her anymore as i had a younger brother of hers to consider. the storys just about broke my heart. but after all the years i can help in someway please feel free to ask 

Name: lifelongmom | Date: Jan 23rd, 2007 4:21 AM
karen, my name is karen, and my daughter is 23 years old, she autistic and severly profound. still in diapers and cant talk, she abuses herself something awful. I know how you feel. Not really able to relate to anyone. The daily grind of taking them to the special school, now day care just to get a break. Does you adult child have a adult day care? They are the best thing for us. 

Name: LettyVLO | Date: Oct 3rd, 2007 4:16 AM
I have a 15 yr old with severe autism. I have yet to find parents that have the same issuse as we do. Stephen is non verbal and completely helpless. He can be loving but aggressive too. He can destroy property as well.
Can be a lonely world when no one understand your situation.
Look forward to hearing from you folks.

Name: LettyVLO | Date: Oct 3rd, 2007 4:23 AM
Oh I also wanted to add that Stephen had his 1st seizure in June of this year.
I a currently going throught "Caregiver Burnout" feeling alot of guilt lately. Hope I can share with you all. 

Name: crofty | Date: Oct 6th, 2007 1:13 PM
Hi everyone, hope you don't mind me joining in the discussion. My boys are only 5 and 4 yrs old. The 4 yr old is severe and the 5 yr old moderate.
I just want to say that i have the upmost respect for all of you and how you have managed to keep your sanity for all those years with your children.
I must say that alot of your stories scare me as i am pretty sure that my youngest will turn into a 2 yr old in a 20 yr old body.
Although reading the post from Karen about hearing her son's singing voice made me cry.
Respect to you all.

Name: momathome | Date: Oct 14th, 2007 7:32 AM
Hello, I live in Salt Lake City Utah. My son, Steven is 26 years old. He was diagnosed with autism when he was 3 years old. I have 4 other children (3 older and 1 younger daughter.)
I have 6 grandchildren.
Steven functions about at a 7 to 8 year old level. He talks but
he can't really carry a conversation.
He loves to tear things apart and put them back together Vaccums, stereos, vcr's he likes record players and 8 tracks players. He's had so many I can't count. He finally breaks them.
He works at a sheltered workshop cleaning rental dvds for resell. He uses his little paychecks to buy screwdrivers (he has every size and color) ;-) . Recently he decide that he would move on to replacing our light switches. OF COURSE he can't.
I'm thrilled and excited to find a chatroom where I can vent and relate to people who will know where I'm coming from.
It is 1:30 am and I have to head in to bed but I'd love to chat tomorrow.
sincerely and excitedly,

Name: LettyVLO | Date: Oct 15th, 2007 3:07 PM
Hello ALL~
I hope to meet all of you and share our stories. I feel better when I know that I am not the only one with a severe case. 

Name: momathome | Date: Oct 16th, 2007 8:03 PM
I just found out we have recieved funding for Steven to be placed in a group home. He's been on the waiting list since he was 14. He's 26.
Steven started having "episodes" when he was 17. I have read a message from "Jan" and I can really relate. He has always had a thing for hitting my youngest , Steven is 7 years older than her. She married, and no longer lives at home. Steve transfered his aggression to my 4 year old grandson and starting going out of control breaking everything in sight. This was happening on the average of once a week.
When Steven is "normal" he is the sweetest person, but when he gets out of control he is really scarry. He goes off without warning.
He's taken Geodon and Abilify But they had no effect. Finally we tried Zyprexa, a miracle drug , but sadly it made him put on 80 lbs in 1 year, besides we had to keep increasing the dose to keep him sane. So we have switched to Seroquil and it sort of works. but he still had really nsty episodes sporatically.

I too have guilt episodes I truly love Steven. We have come so far, and now he is moving out. I know it is for the best, but still, my husband is 59 and I'm 56 I had a minny-stroke last may they say because of stress.
Does anyone have any suggestions of what to look for in a group home? 

Name: LettyVLO | Date: Oct 20th, 2007 5:42 PM
I can totally relate to everyone when our kids get these episodes where good one week and just "hard to deal with" the next. I am physically & emotionally drained.
I am currently on the waiting list for a weekend respite. They are finding a hard time finding a place for Stephen. Because of all his behaviors they just can't seem to find one. But can you do?
Thank you all for sharing. 

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