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Message to CrAP Leaders

May 5, 2017 Motion —  CrAP MP Mike Lake (Edmonton—Wetaskiwin)  stated: "(d) Autism Spectrum Disorder is not just a health issue—it has overarching implications for Canadian society as a whole" = No, just for the Canadian regressive Ableist Party.
 
We are preparing for 2019 too!
Dear CrAP Leaders
"Over a decade later, desperate parents continue to mortgage their homes and surrender their children to protective services, in a desperate hope to access expensive, exclusive, "critical" interventions your party never had any intentions on helping provide.  I feel both angry and heartbroken." - Conservative Sasquatch
Dear CrAP Leaders,
""The right-wing obsessive refusal to embrace Canada's diversity continues to have grave consequences for Canadians who are Indigenous, LBGQ2+, women, interfaith, living with disabilities, and especially those who identify with more than one of the above protected classes.  But little data exists, because these groups have been largely ignored by researchers, including the Conservative Party's own Canadian Autism Spectrum Disorder Association.  The demographic profile of the participants of the CASDA 2013 needs survey  was primarily White/Caucasian, with a large majority having achieved university or college education.  Your party made a HUGE mistake when you underestimated Autistics. The lack of evident linguistic and cultural diversity presents a significant gap in the range of respondents makes your CAPP literally CRAP. As such, the sample does not adequately provide a true representation of the population of Canada, or of the full range of Canadians facing the challenges associated with ASD."  - Yeti Lake
Dear CrAP Leaders
"I speak as a mother, friend, and ally of Canadian Autistics, and as a member of the neurodiversity community.  I also speak as a Canadian citizen who is outraged by what I am seeing in federal politics regarding Autism today.
Our family could have received help.  While the Conservative government sat for years on legislation that specifically and urgently called for a National Autism Strategy, and did nothing but lobby, fundraise, and wage a propaganda campaign using federal funds, all on behalf of a select few individuals and in my daughter’s name, we did suffer.  She didn’t suffer from her Autism: it is that which makes her unique and so very important.  No, she suffered, and continues to suffer from the lack of support, therapy, information, resources, expertise, accommodations, and financial assistance that could have helped her from the time she was first identified as different in pre-school.  Maybe she wouldn’t have run away (many teenaged Autistic girls do: information we could have used at the time).  Maybe she wouldn’t have bounced from home to home, boyfriend to boyfriend, eventually disappearing for a year while we sat at home, frantic with worry.  Maybe professional support and skills training could have prevented the fracturing of our family and resulting mental health issues that continue to affect all involved.
I think about my adult daughter and friends now and see them struggle to make their way in a world that does not understand or accommodate them.  I think about Canadian parents who are desperate to get any help available for their Autistic children and for their own peace of mind.  And how little help is available to this day, except for a select few.  And it infuriates me that they are being fed a lie.  The Canadian Autism Partnership Project promises nothing for Autistic individuals and families.  It promises not much of anything at all, except one more layer of bureaucracy and lip service.  Its parent organization, CASDA, claims be the “One Voice” for Autism in Canada, and yet out of 5,000 Canadians in their Needs Assessment Survey, 90% of whom are white and English speaking, only 125 are diagnosed Autistic.  The Canadian Autism Partnership Project itself represents only 7 (white) Autistic individuals.
The Conservative party line is that Autism is a burden on Canadian society.  To hear them tell it, Autism is a disease that should be eradicated.  They reinforce this with their focus on the expense of ABA therapy in early childhood, “See how expensive Autism is?  This therapy is critical!”  As if funding ABA for every child will “cure” Autism.  Where’s the supporting evidence?  Prenatal genetic screening (researched by CASDA leader Autism Speaks) will be the next step, and then what?  I don’t want to live in a world without people like my daughter and so many amazing Autistic people I know.  Autism is not a disease, it is a neurological difference in the way Autistic people think and communicate. 
A National Autism Strategy, if it had been implemented by the Conservative government ten years ago, would have considered and evaluated all forms of treatment and support for Autistics at all stages of life.  This treatment would have been self-directed and person-centred, according to known medical practice.  Most importantly, it would have involved direct consultation with Autistic individuals at the policy and decision-making table.  Instead, $2 million has already been divested into biased and useless “research” representing a very small segment of the country, resulting in a request for yet another $19 million into yet more “stakeholder consultation.”  How exactly that money is to be allocated is unclear, since no actual budget has been made public.  Nor have the financial statements for CASDA, since it began in 2007, and then was finally incorporated in 2015, conveniently just before the federal election.
And now the leader of the Conservative Party has taken up the charge, calling out Liberal MPs for voting against what is essentially a bad proposal, full of smoke and mirrors.  The irony of NDP Leader Tom Mulcair joining in this charade and then accusing the Liberal party of partisanship is painful.  More painful still was hearing Green Leader Elizabeth May chime in.  I can only assume they bought this ten-year Conservative agenda, no questions asked.  That, or this is a convenient issue upon which to campaign against the Liberal government.
CASDA needs to be dismantled and the Canadian Autism Partnership Project needs to die in the water, much the same way Conservatives saw to the death of Motion M-172 and the Pay Now or Pay Later Senate report.  Let’s see true representation of Autistic perspectives at the table. And real change for all Autistic Canadians and their families." - Pissed Off Parent
Dear CrAP Leaders
Often you hear people say how extremely difficult it would be to have a child with special needs. I disagree. What is extremely difficult is meeting your child’s vast needs. Whether its financially or emotionally. Both are an impossibility without direct supports of assistance and being able to access these supports. This too often appears to be an impossibility and leaves parents not only financially drained but mentally exhausted. Which leads to my personal experience and insight on what the struggles of raising my daughter with autism has been like.
When my daughter was 8 yrs. old due to her extreme behaviours I reached out to The Children’s Aid Society in sheer desperation for help. CAS explained that by placing my daughter in a residential foster home for 2 weeks this would allow for CAS to secure services in place to assist myself and my daughter would be returned home. I reluctantly agreed.
This however never happened and my world unravelled. Two weeks quickly became four weeks and then six weeks. During this time, I sporadically saw my daughter if at all and had limited contact with CAS. None of my questions or concerns were addressed and I was left in the dark. I secured a summer program for my daughter with a local autism community organization to assist me and asked for CAS to return my child to me. They did not. Instead nearly 8 very long weeks later I was served with papers to have my daughter permanently placed in care. Upon finally connecting with a CAS worker I was informed that in order for CAS to provide services for my daughter that I would have to relinquish my parental rights and place her in permanent care. I was mortified. When I refused to do so I was then told that if I insisted on having her returned to me that I would face an apprehension of my two youngest children due to my daughter’s extreme behaviours. Please keep in mind this is an agency I reached out to begging for help, at a time the Conservative Party was sitting on legislation and this was the service they were willing to provide. I feel  bullied, lied to and cornered with no avenue to of helped my daughter. Finally, we appeared before a family court judge who asked for a psychological assessment to be done on our family. The psychologist doing this assessment was one that worked often with CAS and family court. Before our assessment was even complete this doctor became my advocate as she personally became privy to the many wrongdoings on the part of the CAS and spoke up for me. Finally, someone was seeing the injustice and willing to help me.
Things only increasingly became worse. I demanded that CAS return my daughter to my home immediately. Instead CAS followed through on their threat and my two youngest children were apprehended in the middle of the night and removed from my home for 2 long weeks. Our first court date along which I attended with my new advocate CAS psychologist and concerned community members. The judge after hearing all that had taken place ordered my two youngest children immediately returned to my care. They were returned to me infested with lice and scabies. My special needs daughter was not returned to me due to services promised by CAS that had still not been secured. At this point. CAS in my house stands for Constantly Avoiding Services and CrAP stands for Conservative Abelist Party.
I could go on for hours about the nightmare we as a family faced for simply asking for help and the lack of the Conservatives Party to inact an ASD strategy. Which we never received. Nearly over a decade later as I type this I am reduced to tears. My daughter never came home. Promises were never kept by CAS or our Goverment.  Services were never secured. As a parent my rights were stripped and my family torn apart all for asking for help that we were entitled to.
My daughter remained in CAS care till her eighteenth birthday when she was literally dumped off with to an adult residental program. This organization was provided with little to no information about my daughter and her needs.  This transition was a horrid difficultly for my daughter and needed to never have happened. Our family being torn apart never needed to happen. Services, funding and support not made available never needed to happen. We now after over a decade  are finally connected as a family a simple right denied to us for so long.
The way our society views children and adults who live with disabilites  must change! We as a community need to come together to ensure that all our community members needs are met. That families are provided with services and the financial capabilities to provide our loved ones with rights that should never ever be questioned. We need to ensure that no other family is faced with the emotional damaging ordeal my family dealt with for far too long. That not another exceptional needs person be disregarded and devalued. That parents can still access services and funding without sacrificing their parental rights. Our exceptional needs community members are valued and should be treated as such. Funding and services need to be met and our community member’s needs must be supported without question.
I will continue to advocate and demand that changes be implemented that work. Not sugar coated red tape government funding that ultimately meet no ones needs like CAPP and are filtered where they serve no purpose. I hope whom ever reads this will feel the same and become another voice of reason that demands to be heard.
Sincerely,
A Mother of an Exceptional Needs Adult
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