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Thursday

Autism Speaks does NOT speak for me!

I am re-posting about this, as there seems to be a wee bit of confusion about why, WHY should we not be thrilled that some big company is supporting an autism charity?
I posted a link to a petition, although I do not have faith that such petitions will do any good, but this one is AGAINST Toys R Us collecting donations for Autism Speaks.


When Autism Speaks created that Horrid Video I was devastated. Then I found out, last year, that Toys R Us supports Autism Speaks.  I was not impressed.

Why not?
Autism Speaks is anti-autism, 
They run these awful advertising campaigns in which they demonize autism, comparing it to disease, death, kidnapping, tragedy, illness, murders and poverty. Autistic persons and their families & friends have tried to counter the evil message that Autism Speaks has spread.
They do not allow autistic persons to take part in any aspect of their business.
They promote psuedoscience.
They treat autism as a disease and persons with autism as if they have no value as people.

My child is NOT a tragedy.  He is not better off dead, did not cause me to be impoverished, divorced or any such damn thing.  He is not a shadow, nor invisible.  By what right does Autism Speaks spread such fear and hatred of ANY human-let alone a group of people who have a neurological, pervasive devleopmental disorder.
Their "we kidnapped your child" bullpoopie campaign worked great for raking in the dough.  (Money that does not seem to benefit any autistic persons).

So yes, I would like to see Toys R Us helping that money to go to an organization that DOES help autistic persons, provide autistic services, help the families of young autistic persons-even research how to provide better services.
But it hurts my heart to watch a big corporation such as Toys R Us to help give credibility to an organization that is so well despised by so many that are the persons that they are supposed to be helping.

Sad....

Monday

Paperwork-Perhaps that is why parents feel tragic?

So, Sources (previously Gateway), called me to tell me that they are sending us an "autism outreach worker." I admit, although I vaguely remember filling out the forms, I couldn't remember what exactly that meant.  If you have never been the parent to a child with disabilities you may not understand how such a thing could happen-(Is she trying to rip off the system, you may wonder, or perhaps she is just a pathetic parent?)

One of the most tedious duties, for me, of being a parent to Not So Little Man, is the massive amount of paperwork that came with it. First, back when you first started noticing that your precious child was not keeping up with his/her peers in certain developmental areas, (or perhaps when the teachers pointed it out, depending on your child,) you are handed a stack of paperwork to fill out.
The checklists for ADD, ADHD, Depression, Psychosis, Child Abuse, ODD, OCD, heck I am not even sure what some of those checklists are for, really.

Some of the questions are annoying, some are difficult to answer,  (Do you guys know what your children's apgar scores were? I didn't even know about apgar scores until two years ago at Sunny Hill when they asked me what Not So Little Man's score was.) I have three children and had run a daycare in my home as well as fostered children.  I have no idea how old my darlings were when they learned to say three words together in a phrase or sentence.  No one told me there was going to be a test!

A neat thing about these checklists, (screening sheets), you can fill them out today and be fairly confident that you are fully understanding and answering correctly.  Then next year you can look them over and feel completely puzzled.  (Why the heck did I check that one?)

We started with the Child Development Centre in our area.  they gave me five complete sets of paperwork.  One set was for Little Man's doctor to fill out.  One for me to fill out, one for my (then) husband to fill out, one for Little Man's preschool teacher and one for grandma (she lived with us).

Then, if the feeling of taking a test was not strong enough for you, they compare these checklists to see how picked what and what matches.  At that time my (then) husband strongly disagreed that there were any need for these forms. (Hey, were were young-and he did not have the same level of experience with other children or with Little Man as his work took him out of town.) I am sure that I am not alone in finding that at least one person in the group required to fill these forms out dawdled and took FOREVER.

From there we were referred to Children and Youth Mental Health, where they gave us several packages of similar paperwork to fill out.

Then in Kindergarten we were referred to a Pscyh-Ed assesment, with it's own multiple sets of paperwork, then to the Autism Asessment Outreach Team, then to the big city POPARD team, then to Sunnyhill.  Each of these groups wanting copies of all the previous paperwork as well as their own mutliple sets of paperwork.

And then you get a team that does not refer you on, but is confident in their finding to apply a lable. So good right?

ARGH! NO!

More paperwork there.  After we got the diagnosis, we had to fill out paperwork for MCFD (minsitry of children and family development), Gateway (Autism Support,) Child Development Centre, Community Living, Provincial paperwork & federal paperwork-plus get the school on board, get ahold of therapists and fill out their paperwork.

So I was unapologetic as I asked what exactly I had applied for.  The lovely lady I spoke with gave me some very interesting news.  Their service is unbelievably cool (in theory at least), as they send you a trained Behaviour Analyst who is EXPERIENCED in helping families with autistic children navigate the systems, set up home supports etc.

For example, she is coming here and she and I will discuss my concerns for Not So Little Man, and what I want to see happen, how to help ensure that his funding is being used effectively.

She will help me develop a reasonable plan, with clear goals and clear steps to get there.  Then she will meet with me, Not So Little Man's Speech Therapist, BI, EA and the school (principal, councilor, teacher and inclusion teacher).  She will do the same-lay out clear goals, clear steps to obtain those goals and explain how the funding is used to maximize results for Not So Little Man.

Then she actually tracks the progress, provides a report that is CC'd to ALL involved.  She will help his therapists set up plans, help us to do the same at home, and at school.  She will also ensure that his funding is being used appropriately. I have been assured that she is friendly, proactive and not likely to be making the rest of us (school, therapists, parents) feel that we are not competent.

How exciting!  Sounds great.  And it costs me nothing but time and love.  I will have to update as things go along here, as to how it works in practice.

If anyone has suggestions of things to plan for, that would be great too!
Hugs and Laughter,
Angela
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