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[Super Dad]

Here are excerpts from another article.

The school was willing to let the kid with cerebral palsy attend classes, but they would not allow his walker on the school bus. Why does this sound so familiar?

I wonder if the same school is willing to let a kid with autism attend classes, but only if his therapist doesn't come along?

Tony

———-

http://www.cbc.ca/health/story/2008/05/02/fhealth-specialneeds.html

Attitudes towards children with disabilities need improvement, parents say

***
It should have been an exciting milestone in the life of her child. Instead, due to a simple piece of hardware, the first day of kindergarten was for Kim Bell the beginning of a series of frustrating battles with regulators and red tape.

Ian Bell's entrance into kindergarten in Winnipeg ran into a glitch when school administrators didn't want his walker brought on the school bus, saying it was dangerous.

Ian has cerebral palsy.

***
The lack of adequate schooling, the poverty, the exclusion faced by these families is probably news to much of the general public, says Zuhy Sayeed, past-president of the Canadian Association for Community Living, an organization that advocates for people with intellectual disabilities and their families.

"People are under the assumption that people with disabilities are taken care of," she said. "Most Canadians see the ramps. They see agencies for people with disabilities. So they really wonder what our issue is."

***
"Parents [of children with special needs] have to dedicate their lives to staying on top of this," says Angela Scotton of Duncan, B.C., whose 10-year-old twins Megan and Brenna have autism spectrum disorders and sometimes behave in ways that others consider inappropriate. "It's a full-time job, if you want your child to succeed and have the opportunities that they're capable of."

***
"Just bringing your child into a mainstream classroom does not mean integration," points out Jean Ju, a psychologist at the Ottawa Children's Treatment Centre. If no other supports are in place, children can't participate, Ju says.

"We've seen kids who are integrated but very lonely — nobody plays with the child."

***
Too often, though, children with disabilities deal with rejection.

"It's painful," Scotton admits, adding she spends much of her time simply teaching others about what it means to have autism. "Most of these kids have tremendous potential — if it's nurtured and supported."

***
Constant advocacy can be exhausting, but there's strength in numbers, notes Scotton. Like others before her, she's banding together with other parents to share the lobbying load.

"We're able to divide tasks, rather than trying to take on the world by ourselves," she says.

They've dubbed their group the Cowichan Valley Autism Society, and they're seeking better school support, and more provincial funding for families. They also hope one day to build a resource centre where other parents of kids with disabilities can find information and guidance.

But the biggest change these families want to see is public attitude, and to that end these families are also working to increase awareness and media exposure.

"I think when people have a better grasp of the disability, they can then pursue ways to make it work," says Scotton.

[Monika Lange]

Can someone quickly tell me the name and phone number of a pediatrician you'd recommend in the Vancouver area? It's urgent, so please respond right away, to monika.lange@hotmail.com

Thank you!

[David Chan]

Well Tony,

I feel it too, I read your list, and it's just Tuesday, who knows, what curve ball will come flying tomorrow.

That said, there are a lot of chickens, and a lot of eggs. The best thing to do with all of that is to make some omlettes and make some fried chicken for dinner.

If I've learned anything in the past few years, it's to keep the eyes on the prize, stay focus, think of all the things that you are doing as a deposit in the karmic bank.

Enjoy the moment, relish in your little guys achievements no matter how insignificant it may seem to others. Fight the good fight, no one on the outside really gets it.

Once you reconcile and make peace with that, it will be a whole lot easier. Even the ones on the inside can't totally comprehend each individual family's pain try as we might. It's always about the kid, or kids….. everything else, just that everything else, it just doesn't matter.

What I just wrote doesn't diminish the pain that all of us experience, it doesn't hurt any less, it just focuses on why we keep forging ahead. it's like the saying goes about banging your head against a wall. it's feels great when you stop.

Look at the kid, and marvel, and understand what his life would be like if he had never gotten ABA therapy… enough said.

Remember it's not a contest, it's just a journey we are all on. You'd think that researchers would have something better to spend their time on, than to state the incredibly obvious. What do I know, I just take a few pictures, clean the house, and drive the kids.

Side Bar,

two more years till graduation for Mr. P, preparing for provincial exams this year.

from what I gather, if he can muster the effort, and pass English 12, he will be a 100% for real high school graduate. Wouldn't that be really cool if he could do that……maybe he will, and what if he didn't…..as long as he brings his A-game, that's all that really matters.

Once more into the breech, like I've got anything better and more meaningful to do with my life.

Hang in there all,

Dave
Mr. P's Dad

[Super Dad]

The researcher is merely saying that the genes contributing to autism also contributes to other disorders. It doesn't bother me that much to be told that my genes are a factor in my son's disability. My genetic makeup is nothing that I can control to any degree, and therefore I will never blame myself.

I do, however, agree there is definitely a chicken-and-egg issue here. I suspect that some of the following items have had an impact on my mental health:

– watching my son disappear into his own world;
– being told my son has a lifelong disability;
– trying to get a family in denial to start cooperating;
– losing my entire emotional/spiritual support network because my family feels ashamed and demands secrecy;
– withdrawing from society because no one knows how I feel;
– inventing one lie after another to explain why I look depressed;
– being frustrated by counsellors who know nothing about autism;
– competing against snake oil salesmen for my family's attention;
– getting confused by extremely skilled liars;
– listening to an SLP tell my wife that my son is delayed because of a lack of attention from daddy;
– being turned away from all the recommended consultants;
– being scammed by treatment providers run by government groupies;
– trying to make sense of instructions from under-qualified consultants;
– suddenly losing consultants due to their divorce or other problems;
– worrying about when another therapist is going to quit;
– firing a therapist for letting my son eat dirty playdoh;
– watching my son hurt himself;
– watching my son get kicked out of Sunday school;
– handling meltdowns in public places;
– fending off accusations by strangers during meltdowns;
– being told at the last minute that the school won't let my consultant into the classroom;
– not having enough money to sue the school;
– searching desperately for a school that will cooperate;
– being denied a public education just because people want to stake turf;
– being shunned by parents of my son's classmates;
– living with only one income because my son needs my wife at home;
– wondering how to pay for the next workshop;
– being called an ineffective worker when I'm too focussed on my son;
– staying with abusive employers because I need money for therapy;
– selling everything I own;
– seeing the Auton families lose in court;
– losing all pride in being Canadian;
– watching my wife collapse;
– and the most important of all: watching my beloved child cry and suffer, day in and day out.

You may notice from one of the items above that people don't always blame the mother. In my case, the problem is a "refrigerator father."

Tony

[Isaac]

Hello Everyone,

I'd like to add some thoughts to those already voiced by Barbara Rodrigues, Monika Lange and Debra Antifaev, regarding Tony Tamer's posted article –> http://tinyurl.com/3ufnzn.

The "Blame-the-Mother" theme for autism is quite LEGENDARY. It's getting very old and tired, but apparently still gets traction and simply will not die.

Please don't let this get you down!

So-called autism experts really don't have a clue as to what's really going on in our homes and in our lives. I'd argue most wouldn't survive six months in our shoes.

Isaac

[Monika Lange]

Yes, it seems this parental defective theory just adds insult to injury. Well, at least we're just gimped up and not cold and withholding as purported by Leo Kanner. Progress!

[Barbara Rodrigues]

Deb:

My thoughts EXACTLY. I used to be a totally different sort of person than the one I am now. The stress of dealing with the child alone would change one's mental/physical health but then add the stress of trying to get the help our kids need….well, I also wonder "chicken or the egg".

Barbara

[Debra Antifaev]

I had a good laugh when I read this study too, Tony!
I have to ask: "Which came first, the chicken or the egg"?????
I felt pretty "normal" before my son was diagnosed.
I didn't cry for no reason.
I didn't go off on political rants.
I actually had some friends!!
We were invited out to other people's houses ALL THE TIME!(not even our families want us over now……all family dinners are held at OUR house)
I could pay ALL my bills ON TIME.
I believed that most people were honest and fair-minded.
Hmmmmmm,I have a feeling Mommy's mental state is a RESULT of having to deal with being the parent of a special needs child, not the other way around………..
What do you think?

Deb

[Super Dad]

To those of you who know me and think I have a screw loose, now you know why:

*****
http://www.cbc.ca/health/story/2008/05/05/parents-autism.html

Parents of autistic children twice as likely to have serious mental disorder

Last Updated: Monday, May 5, 2008 | 3:42 PM ET
CBC News

Parents of autistic children are twice as likely to have been hospitalized for a serious mental disorder than the parents of children without the disorder, suggests new research.

A review of Swedish birth and hospital records by U.S. researchers reveals that if a child is autistic, their parents are twice as likely as other parents to have been hospitalized for a psychiatric disorder like schizophrenia.

Depression and personality disorders were more common among mothers of autistic children (1.2 times more likely) than among mothers of non-autistic kids, suggests the study, published in Monday's issue of the journal Pediatrics.

The study looked at 1,237 children born between 1977 and 2003 who were diagnosed with autism before age 10. To be deemed autistic, the children all had to have received a diagnosis of autism disorder, Asperger Syndrome or pervasive developmental disorder.

Asperger Syndrome is a variant of autism in which individuals often exhibit extensive knowledge of a specific interest. Symptoms of pervasive developmental disorder include impairments in social interaction, imaginative activity, verbal and non-verbal communication skills, and a limited number of interests and activities that tend to be repetitive.

Seventy-seven per cent of the children involved in the study were boys.

"These results support those of smaller studies that indicated an increase in psychiatric conditions among parents of children with autism, specifically schizophrenia, neurotic disorders and depression," write the authors. "Identifying families with a propensity for rare psychiatric conditions may help uncover rare genes that contribute to the susceptibility of both disorders."

Other mental conditions in parents evaluated in the study were affective disorders, neurotic and personality disoders, and non-psychotic disorders, alcohol and drug addiction, and abuse.

The autistic children were compared to 30,925 kids who were matched in terms of gender, age and hospital.

[Mike & Jean]

You can now view the Ontario "Medicare for Autism Now!" campaign tour summary, complete with candid photos, on our blog:

http://www.medicareforautismnow.blogspot.com

[Author]

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