Category Archives: autism

Acceptance and Inclusion, It’s Only Human.

acceptance

When we first became aware that autism is a part of our lives, I welcomed Autism Awareness Day. I wanted other people outside of our family to “get it”.

But a funny thing happened: Nothing.

One day a year of proclaiming support and understanding doesn’t actually make up for a year’s worth of not getting it.

Then I realized that awareness was never going to work. Each and every autistic individual is the same as everyone else in the world, that is to say unique . One individual’s experience is merely that, one individual’s experience. So learning that a child in your community is non-verbal or has sensory issues does not mean that you “know” autism. It means that you know of the characteristics of that individual.

Then, as I learned more about the autistic and autism communities (autistic community being composed of individuals with autism and the autism community being their families) I realized that the blue shirt campaign is the very successful campaign of a single organization that does not recognize autistics as individuals. It is a campaign of scare tactics used to raise money by promoting autism as an evil thing that is to be exorcized from our family members. Autism is neither evil nor a tragedy. It simply is. Autism Speaks does not allow autistics to have a say on their board. It does not represent autistics. This is why I do not support the light it blue/blue shirt campaign.

What I struggle with most is why anyone who is neurologically different, physically different, emotionally different, gender non-conforming, gay or any other kind of “difference” has to ask for you to be aware of their individual specific circumstances. Why is it so difficult to simply accept and include them? No one will be offended if you ask what you can do to make their inclusion go more smoothly.

And please do not get me started on inclusion and acceptance in our schools, because on the surface it’s supposed to happen, but in reality rarely does. The reasons are complicated but do include the fear factor When we remove that fear, then we pave the pathway to acceptance and inclusion.

Today I ask for you to ask yourself why you struggle with acceptance and inclusion and to please do something to change that.

There are books on this subject, and there are many, many blog posts, most written by people far more eloquent than I. I have linked to several of them below so that you can read them and educate yourself. And find a way to accept and include everyone, no matter their individual circumstances.

#autismacceptance #autisminclusion #acceptanceoverawareness

The Color Blue

No more

We are not broken

This is what acceptance feels like

Not Blue

I will not light it up blue

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The Unicorn


A mythical creature.

A story passed down.

Often describes things that we cannot fathom or dream of.

Things that are outside of our scope of experience.

For example our eldest son’s new school.

I got a call this week asking if I could come in for a meeting. “Of course!” I said, hoping that our honeymoon period wasn’t over yet. When I signed in at the office the principal came out of his office to say “Hi.” and ask how things were going. He seemed genuinely happy when I said that I was thrilled that our son was making friends and choosing to hang out with them outside in the school yard rather than reading in the library or office. Not only did he not think it was weird when I said that alone made our year a success for me, he agreed!

The SERT met me in the office, and together we went upstairs, chatting along the way. Our son was again offered an opportunity to join us but chose to take the bus home with his classmates! Anyone who knows an aspie realizes just how big a step this is. Oh and did I mention that instead of sitting near the driver, he chooses to sit at the back.

With the other grade 8’s.

Because that’s what grade 8’s do.

The meeting consisted of two teachers, an EA and the SERT.

And you know what? There were no major issues. Just some questions about how to handle certain situations. All asked in a “What do you suggest we do/try?” tone of voice.

I made sure to repeatedly tell them how thrilled I was. That they can feel free to contact us at any time. That being proactive like this can only ensure his success. That for the first time he is coming home talking about his day.

And most importantly, he is happy.

I sat in my van afterwards and realized that I no longer had to hold back the tears.

I’m so glad that we made the difficult decision to transfer him. That the school we chose is that rare mythical creature that actually encourages and supports him.

If only every Autistic child had that opportunity…

Is it Ever OK to Make Fun of a Child?

Picture of a blue sky with fluffy clouds. Caption says "Children are only bullied on a continual basis if the bully's behavior is encouraged by the adults in their life"

Picture of a blue sky with fluffy clouds. Caption says “Children are only bullied on a continual basis if the bully’s behavior is encouraged by the adults in their life”

I’ve blogged about this before, and I will continue to blog about it until those who are “grown-up” get it: Kids bully other kids when their behavior is encouraged by the adults in their life

Several weeks ago “friends” posted a picture on Facebook of a child in a stroller. They were treating it as a people of Wal-Mart style pic with which they made comments that they assumed were funny. I looked at that picture and saw a child who was too large for the stroller leaning back hiding her face. In hiding her face, I saw a child who was overwhelmed by the crowd and noise. (it wasn’t clear if it was a mall or theme park or other place, just that there were other people there) In the stroller I saw a child who was perhaps a runner or who perhaps had mobility issues. When I suggested that perhaps the family couldn’t afford a wheelchair the glib comment came back that if the child needed a wheelchair then the government would have provided one.

Sigh. Wouldn’t it be nice to live in a world where all of our medical needs were met by some benevolent caretaker, where there were no wait lists and no need for extended health care coverage? I bet it would be sunny every day and no one ever went hungry either.

The reality is that even here in Canada, children do not get the supports that they need automatically. And if you can’t comprehend that, just ask any parent of a child with special needs.

I mean it’s lovely and wonderful in your life that you don’t have a child or know anyone with a child who has extra needs. But that does not ever give you the right to make fun of someone else’s child. Ever.

Even if this child was not overwhelmed and was leaning back chatting on a cell phone (as was indicated in one of the comments), even if this child did not have mobility challenges and is not a runner, even if this child is simply too large for the stroller, ANY comments that make fun of this child are bullying. When you make fun of anyone, it is bullying.

As an adult, what kind of example are you setting when you bully a child? You are telling your children, your nieces and nephews, your neighbours, your friend’s children that differences are not ok. That bullying is not only ok but that you support and encourage it.

When you do not allow that kind of behaviour in your home and in your life, when you open a discussion about differences, when you become inclusive rather than exclusive, then and only then will we start to see the end of bullying at school.

Think of it another way, when we make a behaviour socially unacceptable, like we did with smoking. Once it was common to see adults smoking in a car with kids in the backseat. Now we look at that behaviour with disgust. That change was made in less than a generation.

I will leave you with a slight digression, if you don’t mind. It is about how children should handle other children that they just don’t like. A couple of friends and I have discussed this many times in the face of some classroom situations we’ve seen in the last few years. We have unanimously agreed that our children do not need to pretend to like everyone. But they must be polite.

Why can’t adults do that in the workplace and set an example for the children in their lives?

Negative And Then Positive End to the School Year

It’s been a couple of weeks since I’ve posted anything.

Lots has been going on, but in an effort to be positive, I haven’t focused on the crap that’s happened at our school and the behaviour that teachers believe they can get away with when it comes to our children. And this time I’m not referring to the teachers of our child with Asperger’s, but rather our daughter and the rather cold, nasty teachers she had this year. But by not writing of it, I’ve been stuck and unable to form a full post (several drafts await editing/saving though)

I find it very stressful confronting anyone and yet I had to do it with them and carefully used the correct language about how as adults in a position of authority need to choose their words and expressions carefully. That dismissing the hard work of a student as “not worth their time” is not an appropriate way to speak to anyone, let alone a child. I called a very last minute meeting with the principal, frustrated at how my child was in tears yet again over class work and how her teacher was treating her. I gave him no option, sending him an email that I was on my way to the school and expected him to meet us in the office. To his credit he did, and actually called the two teachers in question out of class to join us. But that was the only positive part of it.

Excuses to justify their actions were made (two teachers, one English, one French backing each other’s bad behaviour up in an unprecedented show of callousness at our meeting) and I called them on each one. I spoke to one then the other teacher. Both replied with a cold “Ok” clearly indicating “yeah whatever.” The principal lifted his head off the table (yes really!) long enough to look at me when I told him (in front of the teachers) that their behaviour was unacceptable, that instead of supporting and helping their students they were destroying the children’s confidence.

Then without preamble or apology the teachers stood up, left our (admittedly last minute meeting) and left for another meeting. Rude, cold and unbelievable that they are teachers! (If they had offered an ounce of politeness that they’d had a prearranged meeting already then I would have been fine with them leaving, clearly my words were not having an effect) I spoke a bit further to the principal, though my words seemed to have little effect.

When we got in the van, my daughter and I had a few good minutes of saying all the bad things we needed to say, and the joy in getting to say bad words I think took a bit of the sting out of the situation for her.

My husband followed up with the principal and was told that he and the vice-principal had spoken to the teachers about their behaviour in the classroom. I was doubting how effective this was until this week when my daughter told me that after that day both teachers refused to pick her to answer a question even when she was clearly the only one in the class with her hand up. Really? Child-ish, petty, nasty behaviour from an elementary school teacher?! Sigh.

On a much more positive note, we toured our son’s new school for next year. It was a tough decision to move him for his last year of elementary, but as I’ve noted above their current school isn’t a nurturing, supportive environment. From the moment we stepped into the office we were welcomed. The SERT, a lovely lady, introduced us to several people from the principal, to teachers, the librarian and a custodian. All welcomed us with big smiles and told us that we would love it there. We spotted a former classmate of my son’s and he was welcomed to go say hi to her.

Both of us left that experience feeling at peace with our decision to move him. He feels calmer about it, less nervous. And we were welcomed to make an appointment to meet his teacher in August and get more details about his busing. Yes the bus may prove to be a challenge but so far it looks like his request to sit at the front will be respected.

Looking forward to the positive things to come, and releasing the negative experiences (not to be forgotten at all but to be set aside so that they don’t affect our summer holiday).

I’ll blog about our year end camping in another post!

I Never Expected this to Happen in the Schoolyard

I rarely go into the school yard any more. Haven’t for a couple of years. The two older kids are “too old” for mom to hang around with the other moms in the yard. “Too old” to be seen hugging and kissing me.

I have carefully respected these feelings. When I walk them to school, I stop at the crossing guard, watch them across the street, then continue on my walk. We created a signal (fist bump and hand clap) to represent hug and kiss.

The two weeks though, the street their school is on has been plagued by heavy construction as curbs are replaced and parts are resurfaced so we have been taking an alternate route to school. It leads me though away from the lake where I like to walk our dog and baby each morning. So I have been walking around the back of the school yard to a bike path on the other side which gets me around the construction and out to my typical walking area.

Walking through that yard brings back quite a bit of nostalgia. Watching the little kids in Kindergarten, the slightly bigger kids lining up to go into the primary grades, the hovering parents standing in clumps waiting to make sure their little one gets into the school safely.

I don’t know why it causes so much nostalgia, I mean I know I’ll be back there again in a few short years. But by then the older two will both be in high school (even the thought of that takes my breath away– weren’t they just in kindergarten yesterday?)

Yesterday morning we were running a little later than usual and I barely got a chance to fist bump them as they ran to get in the doors. A mom walking back up towards the street looked at me, indicated my eldest and said “He’s yours?”

“Yes.” I said a bit warily, dreading what I was about to hear.

“I just wanted to tell you that your son is amazing. I know he’s had a rough year and that no one has said that to you. But he’s really great.”

I think I said “Thank you.” I certainly hope I did. Who was this woman? And what has she done with the typical way people avoid talking about him.

We ended up chatting for about twenty minutes or so. It turns out that she is a lunch supervisor and has gotten to know my son that way.

What she doesn’t know is that those lunch hours when she chatted with him, that she was providing much needed social interaction for him. The kind that many parents avoid with him. The kind that you can’t force people to do.

When I told my son about her and her compliment, he got a HUGE smile and said “She’s nice. I like her.”

And for me? That woman showed me that even in the wrong school, the right people can still be there. That someone saw our son for who he really is. Not for what his challenges are.

She made my day. No. She just made the rough year fade back a bit. And for that I am grateful.

Just How Hard is it to be Inclusive?

bully meme

Many years ago, when I was in College I had a classmate whom I admired very much. And not in a romantic way at all. He was the first person I had met who was so comfortable in his own skin and identity. On our first day of class, fresh out of high school for him (I of course was *so* mature having been in university prior to this), he showed up with purple hair, beaded necklaces and a shirt that loudly spelled it out for anyone who didn’t get it: “FAG”.

This was in the mid-90’s and up to that point I had not seen much acceptance at the high school level. He clearly had had lots of it, and wasn’t going to back down for anyone.

Why do I bring this up now? Because not everyone accepted him for his differences. In fact we were in the same building as the Law and Security Program which unfortunately lived up to it’s stereotype with a lot of bullying jocks in it. They used to make comments to him and push him around in the halls. One day, he’d had enough and he followed them into their class, stood at the front until he had their attention and then dared them to beat him up right there in the classroom in front of their peers. Of course no one took him up on it. But they also left him alone after that.

I’ve always admired that about him. I only wish I’d been there that day to see what he did and to support him while he did it.

Recently, a video has gone viral of another boy attempting to do the same thing.

I don’t know what’s more sad about this video a) that the kids were laughing at him or b) that he even had to do this in the first place.

Why in 2014 are we still encountering this kind of despicable behaviour? Children are only bullied on a continual basis if the bully’s behaviour is tolerated or encouraged by the adults in their life. When teachers and parents create an environment where ostracizing another student is not acceptable behaviour, then it simply won’t happen. When a blind eye is turned to it we run into situations where children are committing suicide rather than be bullied for another day.

Growing up, we had developmentally challenged children integrated into our gym, art and music classes and they often accompanied us on field trips as well. It was a part of the school experience and we were expected to participate. There was no other option. Never were these children treated as lesser than. I remember bumping into one girl several years later in high school and sitting with her at lunch chatting about her favorite boy band. I often wonder where she is now.

That was in the 70’s and 80’s, so why is it still so hard?

Yet inclusion does happen. While searching links for this post I found this lovely article out of Alberta and in talking to a couple of moms with children with special needs, I heard of a similar story where a way was found to include a wheelchair-bound student.

I wonder then, has inclusion become automatic for physical challenges such as wheelchairs, while neurological differences such as Autism are still in the dark ages for systemic inclusion?

I know it is in our school. Our son has missed out on every field trip this year. Once we chose not to let him go on an out-of-province trip when the promised support (the principal who was to be his “buddy”) backed out a few days before the trip and we knew that the teachers going simply don’t have his best interest at heart, but other times because there was no staff member going who cared to put the effort in to making sure that he was able to successfully participate. Yes this is odd, even for our school, where he has gone on every other field trip ever. But it is also representative of our experience this year. And I know that if we are dealing with it, so are other families. (as I keep hearing when I bump into them at the grocery store and the school yard and out on the street)

Why do we not yet have a system in place that demands inclusion for all children, one that does not tolerate exclusionary or ostracizing behaviour from students, teachers, and other parents? It wouldn’t have to be an iron-clad set of rules, but rather needs to be a culture and environment carefully nurtured and developed by those in charge.

Members of the Media: Stop endangering my son’s life

This. This is why I don’t believe in Autism Awareness — an “awareness” promoted by parents complaining just how awful their child with Autism is. How their lives changed for the worse the day of diagnosis.

“Awareness” is not acceptance nor is it inclusion. When we promote inclusion and acceptance we promote support. Support for the person with Autism. Support for the caregivers. And we do not tolerate articles that say “so severely autistic that they can’t speak”. Speech is not an indicator for competence or intelligence.

It’s time we all stood up and demand acceptance, inclusion and support.

Spectrum Perspectives

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