Posts Tagged "acceptance"

Be The Village

Posted by on Mar 6, 2018 | 0 comments

Be The Village

Autism parents. Autistic adults.

Two communities that have the same essential goals, but are rarely able to meet on common ground.

One point of contention is the internet, and how autistic people are portrayed.

The latest flame on that fire is a video by Kate Swenson of Finding Cooper’s Voice, wherein she talks about her son Cooper’s nonverbal autism.

Kate’s website, Finding Cooper’s Voice, rose in visibility last year, when her video about an altercation at a special needs playground went viral. Then, in October, Kate and Cooper’s video submission to Jimmy Fallon and Today’s “Everything is Mama” contest took the top prize.

Kate makes a lot of videos about her family, and Cooper, in particular.

Kate’s latest video

This latest video, posted via, as caught a lot of attention, both good and bad. Parents of nonverbal children understand and sympathize, and a lot of autistic people are very, very upset.

The main concerns I’ve seen are that the video is “ableist,” “exploitative,” and essentially a Mommy Blog pity party.

And they’re right, to a point.

People have been arguing since the invention of the internet whether or not posting videos/photos of their children is acceptable. Some think it’s absolutely abhorrent, while others embrace the platform with abandon.

There is a lot of concern about Cooper’s right to privacy, and future humiliation he may suffer because of his mother’s posts and videos. I, myself, have faced similar scrutiny, particularly when I started this site, eight years ago. I take care not to post anything that disrespects or would embarrass my children, and from what I’ve seen of Kate’s work, she does the same.

My opinion. Yours may vary.

I think the situation here is a little more serious than whether or not Kate is indulging in self-pity at Cooper’s expense.

This is also about more than Cooper’s right to privacy.

This is about his life.

People like to say that special needs parents are “picked” for their children, or that “God never gives them more than they can handle.”

Those are nice tropes, but in reality, parents of special needs children are no different or better or more special than any other parent. Every parent wants the best for their child, and sometimes that journey is a lot harder and full of stress.

A kind of stress you can’t explain to someone not in it.

Even another autistic person.

I am autistic, and I am also a parent. A parent with four children, three of whom have special diagnoses, two of whom are on the spectrum, too.

I understand that to an autistic person, hearing a parent say “horrible things” about their autistic child is “ableist” and offensive.

I also understand, as a parent to autistic children, that hearing a parent describe their reality is hard to hear, but necessary.

This is a cry for help. For her, for her child.

Instead of vilifying her, let’s recognize that and be her village.

Kelly Stapleton was an integral part of the autism blogosphere. She was a bright and shining light, while simultaneously sharing her struggles with her daughter Izzy.

Her life was hard. Really, really hard. And when Kelli thought she had nowhere left to turn, and nobody left to help her family, she made a desperate decision that changed her family’s lives forever.

She tried to kill Izzy, and herself.

Kelli and Izzy

Kelli got to the point where that action seemed like a logical ending to their pain. To her pain.

I am in no way condoning her actions. Not at all.

However, I think we need to learn from them. There has been an epidemic of caregivers taking the lives of their autistic children/wards, most because they can’t find a way out of their world.

The autism world can be one of utter isolation. Family and friends back off; total strangers judge silently.

As autistic adults, we purport to want the very best for our fellow autistics of all ages. It’s time to put some walk to that talk. It’s time to reach across the table with an olive branch and a life jacket.

We simply cannot have it both ways. If we do not reach out and support parents who are desperate and in pain, they may break. Supporting these parents, instead of ridiculing and criticizing them, IS supporting autistic people.

How can we possibly insist on putting the health and welfare of autistic people first, if we are not willing to help their caregivers?

We know best. We are their children, grown up. We know what our parents went through, and it wasn’t always easy. Would you have wished them to suffer in silence, or to reach out for a hand to hold or shoulder to cry on or simply a sympathetic ear?

We can do better. For Cooper. For Izzy. For every autistic child. They need our village.

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Facing Our Fears

Posted by on Sep 15, 2014 | 2 comments

Facing Our Fears

I’ve been away for a bit. I’ve been in a self-made cocoon of sorts, waiting for the right time to reveal my “new” self.

Or the self I’ve always been, but didn’t really know it.

Anyway, I’ve been thinking on the best way to start the conversation here. This place that I’ve built to laugh and cry, and bemoan, and celebrate autism in our family. This place that has become a safe haven for me and others, a place where it’s OK to be our true selves, autism, warts, and all.

I thought for a while that I needed to bring platitudes and great revelations. That I needed to be profound.

And as I sat, cozy and safe in my self-imposed little box, it came to me.

Rather, Jack came to me.

Jack has been my teacher on so many levels, and I should have known this would be no different.

A couple of weeks ago, we went to a small amusement park and a big water slide park on the same day. We don’t do amusement parks, as a rule, for a few different reasons: Money, crowds, autism, crowds, crazy children, lines, money, and, of course, crowds. The kids have been on a few rides here and there (most recently the Great Wheel in Seattle), but we haven’t done a full-fledged amusement park since Disneyland years ago when the kids were small.

The only water slides my kids have encountered have been the small ones at a downtown spray park, and the slide at our local pool (not small by any means, but not theme-park-sized).

I was worried how Jack would do on the rides, since he really seemed to hate them when he was younger. I also didn’t know how he would react to the water-slides, as you can’t exactly avoid being splashed in the face or dunked underwater.

To our relief, the amusement park was both quite small and fairly empty. The kids didn’t have to wait in line for anything. It was like an Autism Miracle.

He handled it all. Really well. By himself.

For instance, he did this:


He both shot his brother in the face, and took many hits in return. All with a big grin.

He did this:


This one amazed me. Jack HATED swings as a baby and small child. It took about two full years of occupational therapy to get him to not only ride a swing, but enjoy it. Now he’s a swinging fool.

He did this:



This ride made my husband ill just looking at it. They’re up there spinning around, while spinning around. Like teacups up in the air.


And then he did this:

bucking bronco

If you can’t tell from the photos, this little ride here is like a carousel on acid. You sit on a horse, and the platform starts to rotate. Then, the whole thing rises up one side of an arc, then down and up the other side. All while the platform is still rotating. Like someone thought the pirate ship that goes back and forth is a little too tame, and the carousel is just not dangerous enough.

So yeah, he rode that thing. Smiling.

We headed to the water slides, and Jack took off alone. I was worried about him, but figured he’d end up entertaining himself in the splash areas or pools.

Toward the end of our visit, my child ran up to me, dripping wet.

He had done this:





He was so excited to tell me. “Mom! I really conquered my fears today!”

And then he ran off to do it again.

I realize now that I haven’t been hiding in contemplation so much as in fear. I’ve been afraid. This post changes everything for me, but it’s time. If my child, who has come so very far in his almost-nine years of life, can stand up to his own fears and break through to the brighter side, so can I. And I will, for him.

This is my vertical drop.

So, here goes.

My name is Wendy, and I have Asperger’s.

I am autistic.

And I am happy.


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Canucks Autism Network Sports Day Adventure!

Posted by on May 26, 2014 | 1 comment

Canucks Autism Network Sports Day Adventure!

As much as I complain about the state of autism support here in the Lower Mainland, we also have some pretty cool things going on. There are several societies that provide access to camps, supports, and many other activities for autistic individuals.

One group here doing it really right is the Canucks Autism Network (CAN). They help keep autistic kids involved in sports and a lot of other social events. CAN usually tries to involve siblings as well, to help foster a whole family experience. We absolutely love them.

Jack and I were very excited to attend the CAN 2nd Annual Sports Day on May 18th at BC Place. It was a day of serious fun with representatives from the Vancouver Canucks, the Vancouver Whitecaps FC, the BC Lions, and the Vancouver Canadians. I could tell you all about it, but I’d rather show you. Enjoy!

We arrived a bit early, so it was a good hour before the event started. CAN had set up face painting and colouring, but the waiting still got old after a bit. Anticipation and autism don’t mix well. The CAN volunteers are seasoned, though, and did their very best to keep everyone intact.

Face painting is an essential part of every adventure.

Face painting is an essential part of every adventure.


waiting is hard

Waiting, and peeking to see what’s happening in the stadium.


Here we go!

Here we go!


More waiting. Jack says all of the downtime was "abominable."

More waiting. Jack says all of the downtime was “abominable.”


As everyone was introduced, we got a cool view of everything from above.


A birds-eye view of the event.

A birds-eye view of the event.


Waiting is tough, but astroturf is an awesome sensory experience.

Waiting is tough, but astroturf is an awesome sensory experience.


Finally ready to go!

Finally ready to go!


The kids were divided into four groups, and each group spent twenty-five minutes with an activity, then rotated to the next one. Jack’s group had hockey first!


Getting tips from Canucks left wing Daniel Sedin.

Getting tips from Canucks left wing Daniel Sedin.


There were photographers and cameras capturing it all, and showing everyone on the jumbotron. Jack noticed it quickly, and played right to the camera. That’s my boy.


Jack saw himself on the Jumbotron. So did Fin.

Jack saw himself on the Jumbotron. So did Fin.

Fin, the Canucks mascot, had a great time with the kids. He has a thing about chewing on their heads, though. They should keep an eye on that.

Jack and Fin.

Jack and Fin.


Next up was football, and Jack learned how to run the ball, throw the ball, and do a wicked touchdown dance.


Running the ball with BC Lions defensive back Matt McGarva.

Running the ball with BC Lions defensive back Matt McGarva.


Going for a super-high 5 with BC Lions fullback Rolly Lumbala.

Going for a super-high 5 with BC Lions fullback Rolly Lumbala.


We moved on to soccer, and Jack put the Whitecaps guys through their paces. A lot of the other kids were ready for a break, but Jack kept on going. And going. And going.


Going one-on-one with Whitecaps FC assistant coach Martyn Pert.

Going one-on-one with Whitecaps FC assistant coach Martyn Pert.


Trying to get past Whitecaps goalie David Ousted.

Trying to get past Whitecaps goalie David Ousted.


Finally, we moved over to baseball. After some pointers from Mama, Jack smacked a few line drives.


Definitely an American boy - he had the best form there!

Definitely an American boy – he had the best form there!


Canucks announcer Ed Murdoch closed out the event.


The voice of the Canucks, announcer Al Murdoch.

The voice of the Canucks, announcer Al Murdoch.


We had a lot of fun. Thank you CAN, for everything you do!


We had an amazing day - thank you, CAN!!

We had an amazing day – thank you, CAN!!



Click HERE if you’re interested in joining CAN.

Click HERE if you’d like to be a CAN volunteer.

Click HERE for information on how to donate to and fundraise for CAN.


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Autism in British Columbia: Crisis in Process

Posted by on May 7, 2014 | 4 comments

Autism in British Columbia: Crisis in Process

My son Jack was born in the United States and raised in Los Angeles until the age of four and a half. Just before he turned two, he entered the California Early Start program for children with a risk of developmental delay or disability. We called for an appointment in August of 2o06, and by the end of September of the same year, he was enrolled in a variety of interventions and therapies.

At age three, he was formally assessed and diagnosed with autism by both the Lanterman Regional Center and the Los Angeles Unified School District (LAUSD). He was transferred to autism-specific supports, where he remained until we moved.

Jack, 20 months

Jack, 20 months

From the time Jack was twenty-two months until he was four and a half, Jack received the following interventions and therapies:



Provided by LAUSD:

Provided by Lanterman Regional Centre:

  • One hour a week of clinic-based Occupational Therapy
  • Twelve hours a week of home-based Applied Behaviour Analysis (ABA)
  • Respite Care
  • Parent training workshops

We also supplemented his therapies at home, with strategies learned from his providers.

Several of the supports at school and at home were coordinated through the same non-profit organization, so there was continuity in both areas. We felt very confident that our son was receiving every support he needed, and that should he need more, the options were available to us.

We were given choices of providers and schedules, and the ability to change supports and therapies as we saw fit, but we were guided through the process by a social worker at Lanterman (Early Start), and then a caseworker at Lanterman, a support worker at LAUSD, and a coordinator at the non-profit who provided our BII and ABA aides.

It is important to note a couple of things. First, we never saw a bill. Not once. My husband and I signed authorization forms, reports, and time cards, but we were never financially responsible for anything.

Secondly, we were given suggestions and options as to what Jack needed, according to several observations and reports. We were able to give our input, but we were not responsible for creating his treatment plans. We never felt like the burden of figuring out what he required was on us.

Finally, we never saw a pediatrician or medical doctor (other than the diagnosing psychiatrists) for Jack’s autism. In fact, it came as a bit of a surprise to his pediatricians when we told them about his diagnosis. Jack has never had any of the health issues commonly associated with autism, and as it is not required in California, we had no reason to include his doctors in the diagnosing process.

When our family moved to Canada, Jack was in the process of transitioning from preschool to Kindergarten. In Los Angeles, he would have had full-time BII support, and continued with both speech therapy and home-based ABA (he had graduated from clinic-based occupational therapy) for as long as necessary.

I cannot speak to how his support would have waxed or waned over the school years, but I have only good things to say about our experiences up to that point.

I can, however, tell you what happens here in British Columbia.

Once we were settled, we were required to get Jack a new autism diagnosis from a Canadian doctor in order to qualify for provincial autism funding. Government funding is Canada’s answer to autism support, similar to the Regional Center system in California.

First, we had to see a pediatrician, and convince him Jack needed a referral for diagnosis. I was honestly shocked when he balked at giving it to us, even though Jack had already been formally diagnosed in the United States. Twice. The doctor wanted to rule out ADHD (which, it turns out, Jack does have), and Fragile X Syndrome (which he does not), before he would even consider referral. I pushed, though, and he relented.

Next came The Wait. We were told the wait time for assessment would be almost two years, and indeed it was fourteen months before he was seen.

Fourteen months is forever in the life of an autistic child and their family.

It can also be the difference between full- and no-support.

Children assessed with a spectrum disorder in BC  under the age of six receive $22,000 a year of funding to pay for their various supports. The family is responsible for deciding which therapies and interventions are necessary, and all of the hows and whens and whos of making them happen. I know how overwhelmed we were in Los Angeles, and we had several agencies overseeing and coordinating everything for us.

Many families in BC are lost and confused as to what is necessary and when, and who to trust to give them good advice. They are expected to become autism experts overnight, and to know what their child needs at any given time.

Once a child on the spectrum reaches age six, the yearly funding drops to a mere $6,000. To cover every single thing the child or young adult needs.

$6,000 doesn’t go very far, in case you’re wondering.

Now consider the child who has been waitlisted until they are six or seven, eight, or older. Those children don’t get retroactive funding; they’re given the same $6,000 every other child over six gets.

$6,000 to sink or swim.

My husband and I often wonder where Jack would be in his development if he hadn’t had such intensive interventions and instead had to wait years to be seen. The difference between the two months it took in Los Angeles and the fourteen months it took in British Columbia is monumental.

It’s a lifetime.

In the first fourteen months of Jack’s therapies, he learned to use his upper body. He learned how to play.

He learned how to talk.

I cannot stress enough how important the first year of Jack’s interventions was in shaping the person he is today. That time was invaluable to him, and to us.

I have met many families of autistic individuals here in BC and have heard a lot of stories. Some wonderful, many concerning. Some downright terrible.

In the Lower Mainland, where we live, there is only one team that assesses and diagnoses autism. One team for a large and rapidly growing population – the fastest growing region in Canada.

Wait times to be seen are so outrageous, families who are financially able resort to paying for their own assessments out of pocket. Even those clinics now have tremendous wait times.

Yes, there are legitimate circumstances where a child may be older before he or she is diagnosed, but for families seeking help for younger children, the situation here can be bleak.

I cannot imagine where Jack would be today without the solid start he got at a very young age.

I cannot imagine the kind of support he would have gotten if we had to decide his plan of action alone, without professional guidance.

I cannot imagine the outcome if we had had serious budget restraints, or had to turn down therapies because we simply could not afford them.

Jack, 8 years old

Jack, 8 years old

Autistic children in Alberta get up to $60,000 a year for supports through age 18. Why should children in British Columbia not get the same?

Why do children over the age of six get so much less than younger children? Is autism less severe over the age of six?

Why are families left to fend for themselves in a province so well known for caring for its citizens?

It breaks my heart to see even one child go without the therapy and intervention he or she desperately needs. I don’t understand how a province can willingly stifle the potential of certain individuals because of their age or where they live.

It’s just not right.

It’s not Canadian.

It needs to change.

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A Tragedy in BC – Failing The Caregivers

Posted by on Apr 27, 2014 | 9 comments

A Tragedy in BC – Failing The Caregivers

Autism Awareness (ought to be Acceptance) Month is winding down, and unlike April, it will not go out like a lamb. The lion of autism injustice is still roaring, louder than ever.

While people are walking and gathering and fundraising and celebrating the wonders and gifts of autism (which I wholeheartedly support), the dark underbelly is growing. It’s time for us to face it.

Death has become altogether too common in the autism community. Every week or so there’s another story about an individual who has bolted or wandered and not made it home. And every month or so, an autistic individual is harmed or murdered by a caregiver.

The tragedies are too numerous to count, and happening much too often. They are also hitting closer to home – both in proximity and emotion.

Our children are in danger.

Issy Stapleton. Alex Spourdalakis. And now, Robert Robinson.

Last week, British Columbia resident Angie Robinson murdered her 16-year-old autistic son, then took her own life.

It’s easy to automatically blame Angie. How could a mother possibly take the life of her own child? What kind of parent does that?

A desperate parent. A parent who has reached the end of their resources, both physically and mentally. A parent who believes they have absolutely no other answer.

Nobody thinks they could ever get to the point where suicide and murder are a viable option. We all assume if things get dark enough, someone will appear with a light.

No parent, even a parent of a profoundly disabled or autistic child, wants death (I’m assuming the best, of course). Even at the very end of the rope, we are still hanging on, holding out for a glimpse of hope.

But occasionally, the darkness consumes everything, and no light can get through. There is no hope. Or, at least, that’s what a desperate parent believes.

Yes, the violent acts visited on children by their own parents and caregivers is atrocious and unimaginable. No child should ever fear for his or her life in their own home. I am not suggesting that what Kelly or Angie or Alex’s grandmother did are acceptable in any way.

But I do understand them. And I can understand how things could get so desperate for them that they felt they only had one solution.

It all comes down to support. The proverbial village. The village that supports the child needs to support the caregivers and parents, too, and therein lies the rub.

Autism supports vary from country to country, province to provice. There is no standard of practice or care even within a the US or Canada. Children and individuals with autism often need intense, one on one care, either in the home or a residential facility. Not every family is equipped to handle these situations, yet there is often little in the way of respite and support for them.

As far as I can tell, support for caregivers is pretty much nonexistent. If a family member requires placement or full-time care and none is available, what is the caregiver to do? Between a lack of professional support and the overwhelming costs of respite and residential care, it should really be no surprise that parents are losing hope.

There are two victims in these crimes. Two lives lost. Two stories that didn’t have to end this way.

When a desperate parent decides to kill their child and themselves as a way out, the entire autism community has failed.

We have failed the child by not giving them everything they need to live a happy life to best of their ability.

We have also failed the caregiver by not recognizing that a healthy caregiver is essential to a healthy, happy autistic individual.

We cannot expect autistics and their families to survive and thrive if they are constantly at war just to get support.

Any one of us could reach the limit. Or anyone we’ve met. Nobody knows just how much someone can take, and what will be their breaking point. We need wholesale change in the way we support autistic individuals and their caregivers. The reality is if the caregiver is too stressed and is getting no help or relief, the whole family is in potential danger. These horrible stories will continue until something big changes.

Caregivers need to be heard and helped when they reach out. By the time a parent reaches the point of murder and suicide, it’s too late. Families need care and support from the very beginning, not just when things get rough.

Until then, keep your ears and shoulders available for your friends, in real life and on the internet (which is oftentimes who need it the most). Be a friend, be aware of what’s happening. Also, don’t hide your situation from the world. Open up to anyone you think will take you seriously.

And let your local government know how you feel about caregiver support and the lack thereof. Be loud, and be heard.

If the system can’t/won’t help us, we have to help ourselves.

lost boy

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