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

 

“Those that see it, those that don’t”

Take a look at this picture.

socks

It belongs to a friend of mine. (Don’t worry; she gave me permission to share.) 😉

There are two kinds of people in this world. Those that see it and those that don’t.

I am without a doubt, one of those that see “it.” It’s no secret that I like my house clean! Oh wait. Let me clarify. I like the look of my house when it’s clean. Unbeknownst to my husband, the process of cleaning my house is not actually enjoyable for me. I mean really, who wants to spend their “spare” time picking up other people’s belongings?! Scrubbing toilets and dishes, washing clothes, hanging up the clean laundry. Ugh, I loathe hanging up the laundry!

It’s the worst.

Back to my point. I hate the process; however, I really enjoy the outcome! Not for long, mind you. I have three kids, (four if you include the husband.) But how great is that moment when your whole house is clean?! You can sit back on your couch, put your feet up, enjoy a glass of wine and be at peace with your surroundings.

Total Zen.

If you are a Mom reading this, you know that I am lying, because your little terrors angels are a step behind you ripping everything apart. Or, your husband. I don’t know about you, but I can’t focus on anything, when my house is a mess. It’s like a representation of my mental state. If you ever walk into my home and it looks like an episode of “Hoarders” was filmed here, it is in your best interest to leave. Immediately.

By all means, I try my best. I organize and simplify the steps, but I have three kids and with each kid, you get more stuff and more mess. I realized the other day (while cleaning the house of course), that I spend more time putting items back where they belong, than the time it takes for vacuuming, laundry, and dishes combined. Putting things back in their original place! How much time could be saved if the other people that live here would put things back where they belong?! Toys in the toy bin, laundry in the laundry basket, dishes in the sink. It’s like a scavenger hunt to see what kind of treasures I can find on a daily basis! I’m not gonna lie, it drives me absolutely batty sometimes! No matter how hard I try, I will never understand, because I am one of those people that “see it.”

Have you looked at the picture? Do you see IT?

Here’s what I see. A wife that tried her darnedest to simplify a process.

Problem: Her husband throws his socks on the floor, beside the bed, every night. Now, there must be a logical explanation for this?! Some kind of obstruction or barricade that is keeping him from entering the laundry room? Clearly his legs are broken and his crutches won’t fit through the door! Or, NOT. He’s fine. His legs are perfectly fine, but every night he removes his socks and drops them on the floor, beside the bed.

Solution: The wife places a laundry basket in the exact location of removal.

Do you see it now?? Mind. Blowing.

Now here’s the funny part. Not everyone can “see it.” (Well, not before I point out the obvious.) How do I know this, you ask? Because I showed my husband. I am someone that totally “gets” the insanity of it! The wife made it as simple as possible. Yet, the process of putting the socks into the basket could NOT be done. Her husband just doesn’t “get it.”

I thought to myself, this is the perfect example to show to my husband! He is known for leaving his socks beside the bed too. Surely, he will see the hilarity of this picture!

I waited until he got home from work that day. I couldn’t just send this sort of thing in a text; I had to see the reaction on his face when he saw it. I wanted to share the moment with him. That instant when his brain had processed what his eyes had seen, and we’d laugh, and laugh, and laugh about it. I tried to conceal the smirk on my face as I handed him my phone, where the photo had been stored for easy access. He took the phone from my hand. There was at least 30 seconds of silence as he analyzed what he was looking at. I said to him “isn’t that hilarious?” And he says to me “why would someone leave an empty laundry basket beside the bed??”

I could tell by his expression, that he was not joking. He wasn’t messing with me, he was actually puzzled. And so there I am thinking to myself, it does not get any more obvious than this photo, and he still doesn’t “get it”. He doesn’t see the damn socks?! How is that POSSIBLE?!

That’s when I “got it”.

He will never see the socks.

It’s never going to happen, because he’s just one of “those people.”

It’s not his fault. I actually felt a little bit sorry for him. I mean really, to be that oblivious. But then it hit me. Why on earth do I feel sorry for him!? Someone feel sorry for ME! One, because I want to be the person that doesn’t see the socks! That mounding pile of dirty, sweaty, smelly socks beside the bed. How liberating that must feel, to walk past those dirty socks day in and day out. And two, because I am the person, that will have to pick up those dirty, sweaty, smelly socks for the rest of my days.

Why you ask?

Because my husband doesn’t even see them.

By: Sara Park

 

 

“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

Martinis & Motherhood

11311866_10155742366775578_471089672_n

Back in December, an opportunity arose to submit a story for an upcoming motherhood anthology.

The timing was a bit tough, as we were right in the midst of our Kickstarter fundraising campaign, to the fund the second print of  “Clever Carter” books. (Which was a success, by the way ! Yay !) But, lucky for me, the submission deadline for the anthology wasn’t until February ! That gave me plenty of time to sort through the books and pack the Christmas stuff away, before turning my focus back to writing.

A few days and a million interruptions later, I was done! I submitted my story (in the eleventh hour, of course) for their evaluation.

Then came the wait.

I don’t recall exactly how long the wait was, probably a couple of weeks, but I would describe it as a sort of “eternity.” It was like I was waiting for the acceptance letter from my favourite post-secondary school. Sweaty palms and anxiety; the anticipation was killing me !

Well, not literally. But a little bit.

FINALLY in March, I received notification that my story had been accepted into their “Woe” category! (Bet you didn’t see that one coming.) 😉

This awesome anthology is jam packed full of hilarity and “Aww” mommy moments, that will have you wiping tears away while you sip your martini. Yes, the book also includes martini recipes !Martinis book cover

It will be THE book to discuss at your next book club meeting or “girls night in” and it’s available TODAY !

Martinis & Motherhood: Tales of Wonder, Woe and WTF?!” is an anthology and martini recipe book, in one! “These tales of Wonder, Woe and WTF?! Share a little glimpse into the lives of other moms, who are a lot like you. Through their tales, we’re reminded to savour the little things (like capturing extra morning snuggles), to let go of the stresses (they won’t be in that unfortunate phase forever), and to be grateful for the laughs that the unexpected brings (because laughing is better than crying and it may be the only workout our abs get!).”

“So shake up an easy-to-make martini, put your feet up (quickly, before the kids find you) and join us on our journey as we toast to the many clink-worthy moments that motherhood brings.”

Martinis & Motherhood: Tales of Wonder, Woe & WTF?! is now available on Amazon (CanadaUSAUK and more) in print and Kindle version. * Note, Canadians who’d like to buy the print version of the book will need to order from amazon.com as it is not yet available on amazon.ca.

To read about the WONDER contributors, click here, the WOE contributors, click here, and the WTF!? contributors, click here.

Or you can follow the links below.

Did I mention that I’m a “WOE” contributor ? 😉

Cheers Everyone ! 🙂

Sara

Wonder Contributors Lynn Morrison nomadmomdiary.com ,Angila Peters detachedfromlogic.com ,Magnolia Ripkin magnoliaripkin.com ,Louise Gleeson latenightplays.com ,Jocelyn Pihlaja omightycrisis.com.com ,Alison Huff crumbsdown.com ,Leigh-Mary Barone Hoffmann happilyeverlaughterblog.com ,Shannon Drury theradicalhousewife.com ,Patricia Mirchandani raising-humans.com ,Lauren Stevens lo-wren.com ,Cordelia Newlin de Rojas multilingualmama.com ,Sarah Deveau doingallthethings.com

Woe Contributors Shannon Day martinisandmotherhood.com ,Tara Wilson dontlickthedeck.com ,Vicki Lesage vickilesage.com ,Abby the Writer littlemissperfect.com ,Brooke Takhar missteenussr.com ,Kate Parlin shakespearesmom.com ,Christina Antus christinaantus.net ,Jennifer Baird-Dean thechiofjen.com ,Sara Park crcrsmommyblog.com ,Tamara Schroeder thattamiam.com ,Kristen Hansen Brakeman kristenbrakeman.com ,Lori Lu Green LeRoy theinadequateconception.com ,Carolyn Mackenzie Global’s Carolyn Mackenzie on FB

WTF?! Contributors Susanne Kerns thedustyparachute.com ,Sarah Halsall del Rio established1975.com ,Lisa Webb canadianexpatmom.com ,Jessica D’Andrea Kapp jesskapp.com ,Kim McDonald twobugsandablog.com ,Lisa Carmody Doiron momologues-soliloquies.com ,Olga Mecking europeanmama.com ,Holly Rust mothersguidetosanity.com ,Kathryn Leehane foxywinepocket.com ,Jill Hudkins Robbins rippedjeansandbifocals.com ,Kristine Laco mumrevised.com ,Andrea Mulder-Slater noreallyandrea.com

“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

“Morning Breath”

My son brushed his teeth in the truck this morning.

morningbreathpicThis is how it all went down.

My two big kids were getting dressed for school, and we were short on time, so I figured we would do the teeth brushing in the downstairs bathroom. That way, they could finish getting dressed, while I ran ahead downstairs, to start the breakfast process.

I tucked their toothbrushes and toothpaste in my purse, then carried my purse towards the stairs.

The toddler is in this whole “independent stage”, so I waited for what felt like an eternity for her slide down the stairs on her tummy.

When we got to the bottom, I tossed my purse on the floor (this is why I don’t use designer handbags), and I locked the baby gate behind me.

I hurried to the stove, and started heating the pan for my son’s eggs, then I reached for the cereal preference of my girls.

While the eggs were frying, I turned around to see the kid’s homework zippy’s sitting on the counter, so I hustled down the hall and grabbed their backpacks to load them up. Lunch bags were still in the fridge; I reached in, and remembered that I had to warm up my son’s baked beans for lunch!

Bowl from the cupboard, spoon from the drawer, beans in the microwave.

His eggs were done! I brought his plate to the table. We had 8 minutes left to eat.

I started some toast for me as the toddler screamed “all done” from her highchair. I told her “just a minute” as I grabbed a paper towel to wrap my toast in, which in baby language, translated to “you are staying in that chair for the rest of your whole life”, and so naturally, she lost her mind.

Toast was up! Kids were done.

I sent them down the hall to get their coats and shoes on. (Yes, the toddler too.) Two can play at this game of “independence.” My plan of “you still need Mom’s help” backfired as she managed to put on her own hat and half of her coat. I’m sure if she had more time, she could’ve done it all, but the clock was a-ticking, so I tucked her other arm in.

Kids were dressed, we were out the door.

I started driving down the road, and in my rear view mirror, I see my son lean over to give his younger sister a kiss on the cheek. I remind him to ask her if she wants a kiss, and wait for her to answer before he proceeds.(This wasn’t for his sister’s sake.) She would have never said no to him, but he can’t just assume that everyone wants to be kissed, without so much as asking them first. It’s a life skill!

He said to her “want kiss” and I helped him rephrase his wording to make a full sentence. She replied with “yes” and he leaned back in to kiss her cheek, when my daughter said to me “his breath smells like eggs.”

#ParentFail

I forgot to brush their teeth.

But, I still had their toothbrushes and toothpaste in my purse! (It wasn’t over ‘til it was over.) I handed the toothbrush and water bottle to my daughter. There was no time for toothpaste, and it’s not something I could maneuver while I drove, so a water brushing would have to do!

(My son was giving her some serious eyebrows while the electric toothbrush ran on full speed.)

She handed the toothbrush back, as we were pulling into the school parking lot.

Out she went, and we were on our way to my son’s school! (Yes, they are at two different schools.) This was an opportunity though! There is 40 minutes and only a few blocks between the two schools. A serious brainstorming session was about to happen.

My son was going to need toothpaste, there was no doubt about that! I mean, the kid had eggs for goodness sake! He couldn’t go to school with fart breath.

We pulled into his school lot and I parked the truck in our usual spot. I started fishing around the back seat, looking for “supplies”. Oh, this was happening!

I found a garbage bag. Yes! The “sink”. There were some wrappers and a frozen banana peel in it, but beggars could not be choosers!

A water bottle, toothpaste, the toothbrush and a “sink.” We had what we needed.

He crawled up to the passenger seat, where I could assist. I dribbled some water from my water bottle on the toothbrush, with a pea sized amount of toothpaste. (I am a rule follower, after all.) We hit the “on” button. I moved the toothbrush around his mouth while he held the plastic bag under his chin.

I saw someone walking towards our truck, so I shielded the tooth brushing session with my torso. I realized how ridiculous this must look, so I handed my son the toothbrush, he dropped the plastic bag, and I took the opportunity to photograph that “fine parenting moment.”

Say “cheese.”

I tucked the mobile camera away and took control of the brushing while he held the “sink” steady. I needed to be sure there are no eggy remnants left in there!

The brushing was complete, but he had a mouthful of minty freshness. I put the toothbrush down and pressed the plastic bag against his chin. He spat. It didn’t go well. He had no room to lean forward. I hadn’t planned for that. Have you ever tried to spit from a straight up sitting position? It doesn’t work.

*Note to self* Move the seat back, for leaning forward ability.

I wiped his chin with my toast paper towel. I’m super resourceful like that! I handed him my water bottle, so he could swish some water around his mouth. He spat again, but with force, and it came out like a water fountain.

Straight into the bag. Ha! He mastered it! That has got to count for something!? A checkmark on the “ISP”, an “area of strength.”

SOMETHING?!

I tied up the bag and tossed it in the backseat. He looked over at me with raised eyebrows and a generous smirk. Words were not needed. The expression on his face read loud and clear, “my Mother is nuts!”

How about you? Was there a time when the parenting odds were stacked against you? Tell me how you persevered !

Written by: 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

A Day Of Birth

Wishing my favourite boy the happiest of Birthday’s today !

image

It’s always a hard time for Mommy, when your birthday comes around.

I wish I could just keep you little forever, but I haven’t figured out how to do that yet !

For my own selfish reasons, I ache for you to have the material aspects of a birthday.
A “traditional” celebration with cake, presents, a party and guests.

But because of your special diet, you can’t eat the treats.
And you’ve never cared much for presents or elaborate Pinterest parties.

Sometimes we get lost in the superficial parts of a birthday, and forget what we are supposed to be celebrating, a day of birth.

You are more than happy with a free iPad game, time with your family, and a cuddle in my lap.

Simple things have always been enough for you, and so, they will also be enough for me.

Carter, I wish that you will always be as happy as you are today.

That you will continue to love, unconditionally with your whole heart.

That you will always be confident and true to who you really are.

That you will always be THIS kind, and THIS caring, and THIS honest.

Happy 8th Birthday to the sweetest boy, with the purest heart and the most contagious laugh.

I love you to bits !!
Xoxo

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