All or Nothing.

photoALL OR NOTHING

Autism.
You’ve heard the word before, but what do you actually know about it?

Autism is a neurodevelopmental disorder that causes social impairment, difficulty with verbal and non-verbal communication, problems with sensory processing and repetitive behaviours.

Basically, it affects the way a person will think, learn and experience everything.

The latest statistics show that 1 in 68 children are on the Autism spectrum.
It is five times more common in boys, than girls, which makes the number 1 in 42 (boys).
As well, the numbers do not represent children under the age of 8, so as you can imagine, the numbers are much higher when you add those children into the equation.
My son turned 8 in August, and though he was diagnosed with Autism at age 3, he was not one of the 1 in 42 boys represented in the data.

With numbers this high, I would estimate that every second classroom has a student on the Autism spectrum.
If the number of children diagnosed with Autism, continues to rise, I would expect that every class will have a student with Autism, in just a few short years.

When I was growing up, the statistics were more like 1 in 10,000 children.
It was practically unheard of, which is why there are so many adults out there, that don’t know a thing about it. You may even be one of those adults!

A few years ago, my son (who has Autism), was in preschool.
His classmates were starting to notice that he was different than them.
They were asking questions about him, that no one really knew how to answer.
I wanted to help.
I wanted the kids to understand why he did the things he did, and I wanted to encourage them to be his friend.

So I wrote a poem.
It was essentially an “introduction to Autism” for preschoolers.
The poem was read to the children, and it was well received.
Questions were answered and the kids learned how to engage with my son.

That’s where the concept of “Clever Carter” began.

There is a growing number of children diagnosed with Autism every year.
How great would it be to have a resource for teachers and parents that could help to educate our children about Autism, starting as early as preschool?!
A kid friendly way to share some facts and commonalities.
A way to encourage inclusion and understanding of the disorder, from the very beginning.

The poem I wrote became a book, so that other teachers and parents outside of my son’s class, could use it as a teaching tool when educating about Autism.

We pre-sold 200 copies before they were even printed.

Resources for educating children about Autism are sparse, and the speed at which we sold the books, confirmed that.

That is my motivation.
That is why I’m doing this.

Today, we launch our Kickstarter fundraising campaign!

For those that don’t know, Kickstarter is an “all or nothing” fundraising site.
Meaning, if you don’t reach your goal in the designated time (36 days from today), you leave with nothing.
Nada. Zip. Zero dollars.

That’s a lot of pressure on a person!

Fortunately for me, I am well versed in “all or nothing”, because I have a kid on the Spectrum.
It is pretty much our way of life!

(And I like to ignite a little fire within me, from time to time.) 😉

Back to the campaign.
Our goal: to raise what we need to fund our second, much larger print.

That is where I need some help.

I like a little fire, but I am only ONE person.

Please share the campaign.
Everywhere. Often.

Donate what you can to help us reach our goal!

Thank you! 😀

vwp_parkfam05-ZF-1220-55032-1-001-005

Xo
Clever Carter’s Mom
Sara

Our Kickstarter campaign: https://www.kickstarter.com/projects/1067812886/clever-carter-a-story-about-autism?ref=nav_search

Resources:
http://www.ninds.nih.gov/disorders/autism/detail_autism.htm

http://www.medicalnewstoday.com/info/autism/

http://www.autism-community.com/autism-and-learning-2/

http://www.cdc.gov/media/releases/2014/p0327-autism-spectrum-disorder.html

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An open letter to Kathleen Wynne, Premier of Ontario

Dear Mrs. Kathleen Wynne,

First, l would like to say, “Congratulations” on your political victory !

I have been legally allowed to vote for the past 14 years, but I have to admit, that this is the first time I have ever voted in an election.

I have never followed politics, nor had I ever had any interest in voting.
It was your promise for additional support and shorter wait times for special needs that caught my attention.

I am a stay at home Mother of 3, and my first born child is on the Autism Spectrum.

Before my son was diagnosed, I knew very little about Autism, so I’m going to assume that you know as much as I did.

I will do my very best to explain the process to you.

The first thing you will be told after a diagnosis, is that early intervention is vital.
They recommended that the child start Autism intervention as soon as possible. The quicker you start behavioural intervention, the better the outcome for the child.

This part is so important in fact, that we had our son start therapy, even before he had his official diagnosis.
We didn’t want to waste our “critical window of opportunity” (that is, intervention for a child before the age of 6), sitting on a multitude of wait lists.

Our son was diagnosed with Autism when he was 3.5 years old.

When we mentioned our concerns about his development at his 18 month wellness appointment, we were referred for a speech assessment.
Our son was put on a wait list at the CTC in our district, and we had to wait 10 months for that assessment.
After the speech evaluation, they recommended he be assessed for Autism Spectrum Disorder.

Our name was placed on another wait list, and we were finally called for our appointment one year later.

Once we had our official diagnosis and we were deemed eligible for Autism therapy coverage (some families are not deemed eligible, which is another big concern), we waited close to three more years before funding was actually available to us.

That is almost five years of waiting.

Five years that would have been lost during the “critical window of opportunity”, had we not taken matters into our own hands.

We remortgaged our home, we cashed in our RRSP’s and we emptied the account of funds we had set aside for our children’s post secondary education.

That sounds like a heck of a lot of money, right?! That’s because it IS.

Autism Intervention is expensive.

The annual cost is $40,000+ (for part time), and $80,000+ for full time (40hrs per week) therapy.

The minimum number of therapy hours recommended for a child with Autism Spectrum Disorder is 25 hours.
With the average cost of an instructor therapist and the minimum number of required therapy hours, a family is looking at approximately $50,000 each year.
If they continue therapy up until the child is 18 years old, it will have cost the family $900,000.
That is for the minimum number of therapy hours recommended.
Full time therapy will cost a family $1.4 million+ over 18 years.

Lucky for us, our personal funds carried our son through part time therapy until exactly one month before we received assistance from the ministry.

Of course, we will never retire.
Or pay off our house.
Or be able to fund post secondary education for any of our 3 children.

But hey, our dollars brought us to the end of the ministry wait list !
What a relief that was !

After 5 years on our own, having used up all our financial resources, we finally had some help !
Except that the average family receives only two years of therapy coverage, before they are once again on their own.
2 out of 18 years.
(Then from 18 years for the rest of their lives, because there are no supports in place for adults with Autism either.)

Let me just say, a child with Autism is in no way “rehabilitated” after two years.
There is no known cure for Autism, but children can “recover” with the proper supports in place. They can get to the point that they don’t require full time care. They can graduate high school, forge ahead to post secondary education, live independently and become contributing members of society.
It IS possible.
But not without continued support.

Financial support being number one.
We can’t have our children sitting on wait lists for years at a time without intervention, and families simply can not take on the financial burden of Autism.
It’s too much !

You plan to spend an additional $5 million dollars to support families of special needs and reduce wait times.
But that is $5 million dollars split amongst 20 ministry funded children’s treatment centres.
That is an additional $250,000 per year, per centre.
The cost of part time therapy for a child with Autism is $50,000.
An extra $5 million dollars invested into the 20 CTC’s will help 5 children at each centre.

Sadly, hundreds of children are waiting for intervention.

You are the only political candidate that acknowledged the wait times and lack of support for special needs families.
You pledged to invest $5 million dollars in additional support for special needs, and though that is not nearly enough, it is a start.

So, you got my vote.

And now that you are fully aware of the actual cost and wait times for Autism intervention, maybe you can find a little extra wiggle room in that budget of yours. 😉

Pretty please.

Sincerely,
Sara Park

Imagehttp://www.autismspeaks.org/science/science-news/lifetime-costs-autism-average-million

http://www.asatonline.org/resources/clinician/earlydetection

 

“To vaccinate or not”

Vaccinations.

Here I am, new to the blogging world, and I am about to blog about the dreaded vaccination debate.

People often ask my opinion on vaccinations, so here it is.

These are the facts.

I have three children. image
One of them is vaccinated, and two of them are not.
One of my kids is on the Autism spectrum, and he is the one that is vaccinated.

Now hold on a second there before you go reading into my words !
I am in no way saying that his vaccinations caused his Autism.
It just so happens he is vaccinated and has been diagnosed with Autism.

If you were to ask me whether I think his vaccinations led to his Autism, my answer will be “I do not know.”

I DO believe that his vaccinations along with other factors *may have* played a role in his Autism, but that is my own personal theory, because I have no way of proving it.
Any of it.

NO ONE can prove ANYTHING.

As of today, there is NO KNOWN cause for Autism.
It is believed that genetics play a role and/or environmental factors.

If you Google the word “Autism”, you are likely to come across information indicating a possible link to vaccinations.
Our googling of Autism, led us to various resources of vaccination information.
Whether that information is 100% accurate or not, it doesn’t matter.
It was enough for us to question it.

When further researching vaccinations, Autism aside, we found information we weren’t completely comfortable with.
So, for that reason, we decided not to vaccinate our other children.

That’s where our “opinion” stands.

Usually, I am not one to publicly express my vaccination opinion, because there will always be that one person whose comment takes a condescending tone and turns the discussion into an ugly debate.
The tone that implies you are an imbecile if your opinion differs from theirs in any way.
Like they have done more research than any person EVER BEFORE and they have ALL the answers.

And to that person, I say….don’t.
DON’T DO THAT !

Did you do all your own research and talk to various medical professionals before making your vaccination decision ?
I’m sure you did.

So, can we just assume that everyone did ? Please.

There is no need to insult each others intelligence and assume they’re uneducated in their decision.

If you really want to help them, encourage them to do their own research, and come to their own conclusions.

We have a right to make the decisions we see fit for our own families, and parenting is hard enough without a judgy mcjudgerson making us feel bad about our choices every step of the way.

It does not matter if our decisions reflect your own.

How about we just band together as parents and assume we are all doing the best we can with the information we have at hand.

There is no right or wrong here.

Unless you decide not to vaccinate, or you decide that you will.

‘Cause most likely whatever decision you make, you will be making the WRONG decision.

Let’s face it here folks, our kids will probably grow up to be dysfunctional adults either way.  😉