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Heartbreaking Story: Adult Son with Autism Left to State

Broken heartManaging Editor's Note: Below is a sobering look at the future for many familes as exhaustion of mind, body and savings in conjunction with intense care for an autistic adult child becomes untenable. The moderate to severe autism population has few options in our current disability systems.  Competitive employment might be a stretch, day programs are often "daybysitting" at best, and housing options are limited, if available at all. The media is starting to wake up to the flood of children headed toward age 22 and the ramifications for state and Federal budgets alike. Not to mention the very real human toll of pain, heartache and worry.

"I'm no longer able to provide supervision."  Listen to this Mother - she is decribing the autism so often overlooked - intentionally - by organizations and the media alike.   Really listen to her - she is knowledgeable, up to date on how to care for her son and broken hearted. She is us.

Light it up true. 

By Anne Dachel

A Tragic story out of Canada
 
It started with this story on April 26, 2013, Canadian TV: Decision to drop off autistic son gut wrenching says Ottawa couple.
 
Watch the video here:  Exclusive: Couple leaves autistic son in care of the state
(Her adult son with autism functions on the level of a two year old.)
 
"Decision to drop off autistic adult son 'gut-wrenching', says Ottawa couple:


Watchi this video and listen to the mother talk about how Philippe recently wandered away. He is in need of constant supervision.
 
"Philippe requires nursing care for his diabetes as well as his bathing, toileting and personal care. His food intake also has to be strictly managed because of his diabetes."
 
"Parents of autistic adult son not alone in their desperation, say advocates"



Listen to the mother talk about how Philippe recently wandered away. He is in need of constant supervision.
 
May 1, 2013, the Toronto Star reported on the situation in, Parents leave severely autistic son at Ottawa social services agency in 'desperate act.'

"Amanda Telford says she had no choice but to leave her son Philippe with Ottawa social services in order to get him the care he needs.

"An Ottawa couple's painful decision to leave their severely autistic son at a social services agency this week was an act of desperation fuelled by 10 years of frustration."
 
May 1, 2013, the Ottawa Citizen also covered the Telford's situation in, Lack of autism care in Ontario a desperate situation

"There have been so many cases of parents dropping their adult children off with government workers, or failing to retrieve them from short-term respite care, or dropping them off at homeless shelters - including in Ottawa, according to a woman who runs a support organization for parents - that Ontario's Ombudsman, André Marin, has launched an investigation into the crisis.

"'We have heard heart-wrenching stories from aging or ill parents whose adult sons and daughters are a danger to themselves and others and need constant care that can't be provided at home - but they have nowhere to turn,' Marin said when he began the investigation last fall. His office is dealing with so many complaints about the issue that the investigation might take longer than the planned six months....

"The waiting list for residential care for developmentally disabled adults like Telford's son has 12,000 people on it, according to Fry. Many of those on the waiting list are parents in their 60s, 70s and even 80s who need help. Others are in crisis situations like the Telfords and unable to keep their children safe."

 So why is this story so important?  It's because it's the wave of the future.  People reading about Philippe need to be aware that we have to do more than make sure care is being provided for adults with disabilities.  We have to be alarmed about why there is such an increasing need in the first place.  We have to start talking about the numbers and ask so many children are sick. 
 
This young man is everyone's child. We've pretended autism isn't so bad and it's always been around. BUT THE AUTISTIC ADULTS ARE COMING. We may have grown used to endless stories of kids with autism, but these reports aren't going to be as easy to accept.

Every spring more and more children will age out of school with nowhere to go.

Every year, more and more parents will simply be unable to care for their very needy children.
This mother is articulate and knowledgeable about her son and his needs. She is respectful in her remarks and officials have to take note of the disaster she's describing. We need to get used to these accounts. Autism is no longer just a curious childhood disability. It's going to be an adult problem. The same officials who've covered up the autism epidemic among our children won't be able to do it when it involves adults. And we'll all be paying and paying and paying.
 
And here's similar story from the U.S.

May 1, 2013, Fall River (MA) Herald News: Aging parents of autistic adult cherish moments, worry about future

 
Maybe when we stop walking and turn off the blue lights we'll discover what's really going on.

Comments

Jill

They know it has always been here since vaccination occured. These kids were put in institutions in the past, and they know they do not have money in the government to support them. The goal is depopulation why would they risk pumping you up with vaccines knowing this will happen. It happened to my own son. When he was three he used to do things like talking, and eating soft food to not eating anything at all or ever speaking again after his third year vaccines. Now he functions as a one year old at ten. People need to stop being naive, and stop believing everything your told. Investigate why this is happening, and the parents are treating like garbage on top of losing a child to this condition. I will say it is slow death because his life has been taken away from him. He will not be able to raise a family, or simply live the life he should. We all need a break and should all form a class action lawsuit of not providing a place were these kids can be healed, and we can get some rest. We need to think about the future of our families as they are being destroyed while others profit from this.

Lenore

Look into the HCBS waiver program it's a federally funded program that lists all these services autistic adults can get and yet California is denying the autistic adults services through their 21 Regional Centers because each regional center can make their own purchase of service criteria, that excludes nursing care for autistic adults. Something needs to change.

Lissette Franco

My eight year old daughter haves sever autism.she haves speech delay and is starting to be aggressive and bits at her arm.it gets very bruised an she cuts her skin open .I was able to put a wrist band that is designed for biting.now when she bits at it ,no injury is occurring on the the skin. My point is,I'm worried to death for her as she gets older,it seems like she is getting worse instead of better.I hope an pray by the time she is an adult she can function on her own.I wouldnt be able to die in peace unless I know she will be fine.I guess I need alittle

hope.maybe a story of another parent who had a child like
mines completely surprised everyone.I just want to get
alittle hope to ease my pain.

Angie

I am the parent of a 22 year old autistic son. It is do hard here in Alabama they have a waiting list with over 3,000 people. Everyone is playing the blame game. Ever sense my child was 7 he has been on someone's list. I need help!!!!!

zach

pray for a cure

Shiny Happy Person

If this young man's medical issues are in any way linked to some prior medical decisions, then here is the "impact" side of the risk equation...

oneVoice

The parents are exhausted,would of be better if they get extra support from the government/support agencies to take regular breaks.A day program would be a good plan,so they can recover and get some rest.Where is the support for the parents??? This is an impossible never ending job,seven days a week,24 hrs.a day.She loves her son,it is the vaccination program and the health care system that failed.Can the government care givers provide the high standards and the care and protection for this young men to survive and and thrive??? It is heart breaking,I know just how she feels.

cs

I was in the job market around the olympics and looked into moving to Canada from Texas. Families with autism are not allowed to move to Canada as they are a burden on the system.

Anne Dachel

I posted this on my blog...
Canadian TV: Doctors still don’t know if more kids have autism as parents grow desperate
http://annedachel.com/2013/05/03/canadian-tv-doctors-still-dont-know-if-more-kids-have-autism-as-parents-grow-desperate/

If you scroll down on the story, you'll see all the coverage is situation is getting in the Canadian press. Wait till we're seeing the same kind of stories here.

Anne Dachel, Media

Angus Files

Sorry to read that Martha possibly anyone over in America can help you with this ..I am sure someone reading this might help..

Best

Angus

Martha Moyer

Well, I am in the middle of the nightmare. I am old, widow age 75. I have created a program that works for my son age 39 but I have to run it day and night. I never get with my grandkids. Have a younger son too. I am constantly trying to find a way to get expensive bowel supplies paid for since an institution ceased toilet training, without my knowledge, and nearly killed him because my son had a severe impaction due to that. His bowels don't work now. One time I ran into the director at an autism event talking to some parents. He saw me and my son and said, "Look at this fine young man who graduated from my care." I said, "Look, the only credit you can take is for ruining his bowels." The state has a law that you can't sue the Texas Edcational Agency, a state agency. It was paying for my son's care.

Angus Files

I have 4 kids oldest fully vaccinated no probs..2nd oldest born perfect met milestones before his peers...

He then had the MMR as his older brother had and hey presto! Adverse reaction to the jab,temp of 103 ..head the size of a baloon, green puss coming out of his ears, and covered head to toe in a red rash...now aged 15 years old with a school assessed age of around 2 years at best.

I also have a boy aged 9 years old and a girl aged 7 they have had no vaccines whatsoever, oral or otherwise...they have never been to the doctors not once for any illness both have had measles and chickenpox. Which looked worse than the inconvenience was to them ..they weren’t ill..

Thats my own little study sadly to late for my 2nd oldest.

MMR RIP
.

SpeechTXJulie

yup. Autism is certainly NOT trendy.

Benedetta

He is 19 years old
Autism is just one problem
He has diabetes.
Do you think the faciltiy will watch feeding him white bread for his supper?

"Oh, the Horror!"
Conrad had it right in his book "Heart of Darkness"

Anne Dachel

In the face of the tragedy in Canada, this was just announced on Canadian TV:

As autism rates rise in Canada, doctors search for answers | CTV News
http://www.ctvnews.ca/health/as-autism-rates-rise-in-canada-doctors-search-for-answers-1.1264677
Canadian TV uses the word "rise" to describe the stunning increases in autism.
It's still a mystery.
Genetics is cited.
The recent statistic of one in 50 isn't used.
No one is sure how much of the increase is real.
And of course it's nice to see Coleen Boyle cited saying she's clueless about why the numbers keep going up.
As this nightmare gets worse, how long will the public put up with the malfeasance of officials when it comes to knowing anything for sure about autism?
(No place for comments.)
Anne Dachel, Media

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