An open letter to Kathleen Wynne, Part 2.

Oh, KathleAllYouNeedIsen. What. Have you. Done ?!

After hearing the recent changes announced by the Liberal government, regarding the Ontario Autism Program, I felt inclined to write to you again. Forgive me for having not written sooner, but you dropped a bomb on us Kathleen. I needed some time to crawl through the rubble.

I am the mother of a child with Autism, and I first wrote to you back in June 2014.

Kathleen, you humiliated me. You humiliated all of us that believed you, when you promised additional support and shorter waitlists for our children with special needs.

My husband and I tuned into our local news station, along with other eager parents in the Autism community, on March 29th. The $333 million in funding sounded promising ! I mean really, how could an announcement for additional funds towards supporting our children with Autism, be bad ? But it was. It was so bad.

You didn’t help Kathleen, you made it WORSE.

What was the ultimate cost of this additional funding ? Our children.

Half of these kids have been dropped from the waitlist indefinitely. Another allotment of children will receive a short round of therapy, before they too will be dismissed. Then, the remaining children will sit on that waitlist of yours and their parents will pray that they make it to the top, before their fifth birthday. The children that you ousted, were the kids that you allowed to sit on the waitlist. Some of them have waited years for the intervention that now, will never come.

I am writing to you as a parent of a child that is NOT, directly impacted by the recent changes to the IBI program. I guess you could say that our family dodged a bullet, because we were one of the “lucky families” that were discharged from government funded IBI, before the big announcement.

Our son is nine years old now. He was 6, when we finally received government funding, so he would have been one of the children left behind, according to the new rules. He was capable of learning at 6 years old and he is still capable of learning, in the present day.

Families are made to jump through hoops, when seeking a diagnosis and support from the Ontario government and it is extremely frustrating !

My husband and I knew that our son wasn’t developing typically by 18 months old, but even after expressing our concerns, we sat on a waitlist for two more years, waiting for him to be assessed.

Do you know what hurts more than hearing your child has a lifelong disorder, Kathleen ? Finding out that the therapy they need, is not covered by the Ontario Health Insurance Plan.

Do you know what makes that pain even worse ? Hearing that extended health care plans, don’t cover the therapy either.

But that’s okay, right ?! Because there was funding available to these ASD children, through the Ontario Autism Program ! Well, not all of them. Only some of the children that were diagnosed, were ever eligible for government funding. Then, even if a child was fortunate enough to be deemed “eligible” for treatment, their name was placed on a waitlist. That list, is where their name remained for several years, waiting on intervention. My son waited almost three years for government funded IBI.

We, like so many other families, emptied our accounts to fund his therapy privately, while we waited for his name to reach the top of the list. We remortgaged our home, borrowed money from family, withdrew our RRSP’s and spent the savings that we had set aside for our children’s education and let me tell you Kathleen, it was a hell of a lot more than the $8,000 consolation you are offering these families! We exhausted all of our financial resources to pay for our son’s private therapy program and ran out of personal funds, the month before the government was able to offer their assistance. All our money and investments were gone, but we still had hope! We knew that at the end of the deep, dark tunnel, there would be light, and that the government funded IBI program would be there for us to lift the financial burden. Even if only for a little while. Except, now it won’t be.

For so many families, THAT. WAS. THEIR LIFELINE ! You took it away.

It was a broken system yes, but you just smashed it to smithereens !

I feel the pain of these parents, I do. I am absolutely devastated for them ! You’re not devastated for the situation they are in, I can see that. It’s because you think that this decision will only impact the Autism families, but you’re wrong.

This decision impacts all of us !

These children with ASD, having had little to no intervention, will be sent into the school system by the hundreds, over the next 5 years. Your decision will affect the thousands of typical children that attend school, likely now overlooked, because their classmates with exceptionalities have needs that are greater than theirs. This is the school system that is already struggling to keep up with the existing number of special needs children in their care.

The health care system will also suffer the consequences of your actions.

The parents of children with ASD are worn out. Their constant fight for services and the demands of caring for their kids, have left them exhausted. There is no lifeline now. They did their part. They waited their turn. Then, they were rewarded with abandonment by their Liberal government. I hope you took into account the number of parents that will need to seek out mental health services, for themselves. Their psychological and physical well-being will suffer, as a result of your decision. They have reached their breaking point.

The children with Autism whose services you denied, will grow into adults. Their parents will no longer be capable of caring for them and most, if not all of those grown children, will require full-time care. There are not enough resources for adults with Autism now, can you imagine the impact on the provincial economy when thousands of adults with Autism are in need of services, all at once ?

To say that I am disappointed in you and the Liberal government, would be an understatement, Kathleen.

You made the wrong decision and you know it.

The children and families that were waiting for services deserve to be reinforced for the undeniable amount of patience they have shown over the years. The way to do that, is by providing the children with the IBI services that they were entitled to.

It’s not too late to make it right.

Sara Park

CarterandMeBookLowResolutionboy and mehttps://www.facebook.com/CleverCarterAStoryAboutAutism/

www.clevercarter.ca

 

Advertisements

“The Final Day”

Both my big kids attended separate schools this year.

Carter was fortunate enough, to be accepted into a fabulous program for children on the spectrum. It was his therapy and school combined, which meant we had to stop home therapy and move him to a different school. We knew going into this, that it was only temporary, but that doesn’t make it any easier when you’re nearing the end.

Today is the last day of the school year, for Carter.1

In September, he will return to his home school where he attended, the two previous years.

Let me just say, that I ADORE his home school ! It is not in our catchment area, but I would drive twice the distance if I had to, so that Carter and his sister could attend. We have a wonderful SERT at our home school, and Carter has been blessed with amazing teachers and EA’s. Even the principal is lovely ! I am excited for him to see his classmates again, rekindle some old friendships and attend a school where he may even get to see his sister in the hallway, from time to time.

With Carter returning to his home school, things will be a little easier on me. I’ll have one drop off and pick up location, and both kids starting and ending school at the same time. That alone will allot me an extra hour per day! (Hey, maybe that will be my “writing time?!”)

It’s just the change. The change can be hard. Taking the next step, knowing there is no going back.

Always, always wondering if we are making the right decision, every step of the way.

Of course, I know that being a parent of any child, you question every decision you make for you kid. But when you are the parent of a special needs child, all your decisions become that much harder. Every single choice you make, or don’t make, can impact them in such a significant way.

And not necessarily for the best!

I do believe though, that he is ready to take the next step. I think he has gone as far as he can, in the program he has attended this year. Lord, I hope I am right!

Carter and I spent a lot of time together in the mornings, during the 40 minutes (and only a few blocks) between the two schools. 7

At the beginning of the school year, and in the last couple of months, we played at the playground and kicked a soccer ball around. (He’s getting really good at dribbling.) During the colder months we sat in the truck and practiced his IBI goals5 together. We made up word games, watched movies on my IPhone and made silly faces at each other.

92

A lot of selfies were taken. Carter really likes the selfies! Though I guess in actuality they are not considered a “selfie”, if the picture is of him and me together, but let’s just forget that technicality.

Today, I chased him down the slide and across the field, back and forth (“tag” is his new favourite game.) I pushed him on the “blue swing,” counting 5 pushes and one11 “crazy push” at his request. I tickled his legs as he swung on the swing and emptied the sand from his shoes, before it was time to head in.

We spent our last morning together, at this school, doing the things we loved to do.     8

So it only seemed fitting, that we took our last pre-school selfie together, before Carter went in to attend his final day.

Sara Park

“Our Compassionate Leader”

There is something extraordinary about our eldest daughter, Caris.

Okay, there is something extraordinary about all three of my children, but our middle child exhibits two of my most favourite qualities. Compassion and Leadership.

Shortly after our son Carter was diagnosed with autism, our daughter Caris was born. It was as though, the joy of her birth was relevantly timed, to soften the blow that the autism diagnosis had carved in our chests.

I’m not going to lie. Maneuvering through autism while caring for a newborn was no piece of cake! She was a challenging baby, but I know now that her tenacious personality was the cause. The stubbornness she possessed, was her way, of trying to be in charge of everything. Even as an infant, she was a doer, which became completely apparent, the first time she shouted “I do-ed it myself” at me.

Some people may describe her demeanor as a little bit bossy, but I say, she is fiercely independent and a born leader!

Don’t ask me where the dominance comes from, because neither I, nor my husband possess it, but this little firecracker fit our family in such a way, that it felt as though she was chosen for us, on purpose.

She has always known how to relate to her older brother, Carter. I don’t know exactly how to describe it, other than to say, she just “gets” him. Even when he was unable to communicate verbally with her, she understood what he needed. No words were required from him. She knew exactly how to accommodate “play” so that it could include him, and she’d find a way to manipulate toys or the game rules, so that he could understand them.

It’s because of these inherent skills that she is often referred to as Carter’s “mini therapist.”

The other night, Caris was playing with her new Lego set, at the kitchen table. She asked Carter to join her, and he politely declined, but she was upset with his refusal. I explained to her that Carter has a hard time with Lego, because he has to use his imagination when building things, and that it’s really difficult for him. I said to her, that he’s not able to see creations, just by visualizing them, the way that she does. As much as he likes to play with the “finished product”, he gets frustrated when he has to build something without specific instructions.

I walked away to tend to our toddler, who was calling me from the playroom. When I returned, Carter was sitting at the kitchen table with Caris, building something out of Lego. I walked towards them, to see what it was, and Caris said to me “Mommy, I took apart my Lego ramp and sleigh, so that Carter could put it back together.”legoblog

This particular set was a day old, and highly admired by Caris. She had placed the box aside in the other room, complete with instructions, the day prior. She could have accepted his rejection to her invitation and continued on playing independently, but she didn’t allow for his limitations to prevent him from having fun.

Sure, as the parent, I might have come up with that idea myself, had I been given some more time to think about it, but I didn’t have to.

She had thought it up on her own, just as always.

Sara Park

Sensory Overload

I stand in a crowded grocery store, waiting for the cashier to scan my items.
Carter is here.

Waiting is hard for him.blogpostpic

He does his best, but the bright lights, the sound of the scanner, the buttons on the cash register, a squeaky cart, the chatter, automatic doors, now a baby is crying….it is sensory overload for him, and it’s too much !

Sometimes I can see he’s struggling, and I praise his efforts before an outburst occurs.

But not today.

He vocalizes a loud stim and hand flaps to counteract the noise that surrounds him.

It doesn’t go unnoticed.
It never does.

I’ve found it’s best that I don’t make eye contact with anyone when *it* happens.

I focus my eyes on Carter, and with no words exchanged, I can tell by looking at him that he already feels bad.

He did try.

I know he did….but it is so hard for him !

I remind Carter to have a quiet voice and calm hands.
I ask him if he wants a hug. Sometimes the pressure of a tight hug, helps to release the build up he is feeling inside.

I imagine it would feel like you are standing at a rock concert.
The music is pounding, people are screaming, your ears are ringing.
It hurts, but you can’t leave.

It’s that noise that makes your skin crawl, like nails on a chalkboard, only there is no chalkboard, it’s just your life, and you are surrounded by it all.the.time.

My heart sinks heavily as I try to contain the resentment I feel, towards the people around me.

Autism is an “invisible” disability.
The kids on the spectrum look the same as everyone else.
So naturally, people will stare.
They’re trying to analyze the situation, the child, I get it.
But it doesn’t make me any less angry.

It’s the “Mama bear” instinct times one hundred.

This is our day-to-day.

At the grocery store.
The playground.
The Doctor’s office.
Library.
Church.
School.

Everywhere.

Autism is a life long disorder.
Like most kids with ASD, this will always be a struggle for him.

Sensory processing and Autism go hand in hand, so even with years of therapy, he may never be able to adapt to his surroundings.

We put forth so much effort trying to change these kids on the spectrum, to make them adapt, when in fact, they may never be capable of change. And it’s not their fault, they are doing the best that they can, it’s just that for many, it is an impossible feat.

But we can change !

How you ask ? Stop staring, for one.

Have compassion. Children on the spectrum are not misbehaving, they are truly struggling with their surroundings.

A struggle beyond anything us “neurotypicals” can understand.

Every day is hard for them.

So please remember that the next time you see a child in a grocery store, or a Doctor’s office, or a library, that is having a difficult time.

They are coping the best that they can, and so are their parents.

Sara Park

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

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.  😉

“White Noise”

photo (2)I heard Carter crying out from his room at bed time, so I went upstairs to check on him.
I walked through the door and saw that he was covering his ears.
I said to him, “What’s wrong?”
“What’s the matter?”
He said, “My ears hurt”, (sensory), and continued to cover his ears.
I said, “Do you want me to turn the rain off?” (Which is the sound of rainfall from his white noise machine)
He said “On.”
So I asked, “Do you want me to turn the (ceiling) fan on?”
And he said “Yes please.”
I turned on the fan, and then I knelt down beside his bed.
With the night light of stars shining above us, I ran my fingers through his hair like I did when he smaller. I rested my head on his pillow beside him, and I gazed into his eyes.
I told him I loved him, and he whispered something back to me.
I asked him “pardon?”

He lifted his head, leaned in towards me and said “See you later Mommy!”

Which, in Carter lingo translates to, “Get the hell out of my room!”