Tag Archives: asperger’s

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…

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.

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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exhausted by the school

Some of you may know that we’ve been having a lot of issues at our school lately. It’s been especially frustrating as we have always taken a team approach to dealing with the IEP and any accommodations.

It finally took a formal complaint about the teachers and the SERT to the board before we saw action.

And it’s still only the very basic of accommodations. And I am exhausted by the battle to get there. So much so that I sent my husband to do the last meeting at the school. I want to find that team spirit again, but the fight has taken it out of me. And I’m not sure I could have sat in the same room with these teachers and been polite. After all it took a formal complaint in their file and some intervention from the board before they would even treat my son with an ounce of respect.

The accommodation that they are doing? Chunking his work down! Not rocket science.

The big plans I had for this year about working on his social skills and group participation? Gone down the tubes. We actually had to say to the school that the gym teacher allows the kids to divide themselves up into groups and they argue over who has to take our son in their group! Really?! How about dividing them up by numbers or alphabetically or any other way that encourages inclusivity and sportsmanship?!

So… the fighting has burnt me out. I have resigned as co-chair of our SCC and will resign from the Health Action Team at the end of this year.

And it’s why I’m a bit behind on posting.

It is March Break though, and my fabulous husband came up with a day by day plan to have fun locally, so I figure that I will re-charge with our kids and have something fresh to blog about.

Start a Conversation

Social media is an interesting phenomena. Lots of bickering, mommy wars, and one of the best ways to keep posted on what’s happening in the world. And when that’s all overwhelming and too much, there are always the feel good stories. They pop up, get circulated around and everyone shares them to further spread the warm and fuzzies.

The latest one to get circulated is about a boy with challenges similar to autism who asked his mother not to have a birthday party for him because he doesn’t have any friends. Mom set up a Facebook page and the media picked it up and now he’s being inundated with birthday cards.

How heartbreaking that his mom needed to do something like that. I get it, I truly do as I share in her despair every day. Kids with autism face so many challenges that it just doesn’t feel fair to add a lack of friends on top of it all.

So many people got on board for this, that it seems like one of those heartwarming do-good, feel-good stories. Teachers were even getting their entire classes to create and send cards. Mom was even getting notices from the postal service that there was too much mail!

But…after a friendless card-opening party with his mom, that boy will go back to his lonely existence. Neither your life nor his will be any better.

So I’m sending a big ‘ol shame on you to all of you who shared the story and/or sent a card. Yes I said shame on you. Because you all saw a feel-good story. Some of you even spent the $5 to buy a card and a stamp. And you all patted yourselves on the backs for a job well done and went on with your lives.

Nothing has actually changed. Tomorrow that boy will wake up and still face the prospect of going to school and not exchanging a single word with his classmates. If he’s really lucky a teacher might ask him about what he did last night, but more likely he or she will only direct him about his schoolwork.

Whether you are a teacher or a parent, you should be using this as an opportunity to talk to your kids about exclusion and loneliness. How inviting everyone but “that” kid to your party or giving out a valentine to everyone but “that” kid is causing very real harm. Kids with special needs can’t help their behaviour, and if it seems odd to you then you need to learn to get over it.

If you don’t know how then ask. As a parent, I would much rather be asked by a child or a parent about how to interact with my son than for him to be ignored and ostracized. If you are too uncomfortable to ask me, then ask a teacher. If you’re the teacher and you don’t know, ask your SERT, or me, or call the special education expert at the board.

Please notice that I said “interact.” I did not say “fake friendship with.” Pretending to be someone’s friend when you really aren’t only causes harm to both people and frankly they don’t need you in their life. I’m talking about basic human interaction. A conversation. Try starting one. You might be surprised at what you discover.

In fact, as parents and teachers, you should be modeling this for your children. What’s stopping you from having a conversation with a lonely person? You all know someone. Whether they are a freak, a geek, a loser, a senior, someone with physical, developmental, or mental disability; you all know at least one lonely person.

To really, truly make a difference in the world, you need to speak to these people.

And saying “Hi” only barely qualifies for good manners. I mean truly have a conversation. If you’re Canadian then complain about the weather with them. If you’re not, then comment on something in the news. Ask them how they’re doing. And wait for an answer. Be patient. If they are truly a lonely person then they aren’t used to being spoken to like that. They might be caught off guard or need to formulate an answer. Whatever it is, it’s not likely to be what you were expecting. And it will be worth it.

Your conversation doesn’t have to be an hour long marathon to count. Just a few minutes while waiting in line for coffee or while waiting for the bus or while waiting to go inside after the recess bell. Just long enough to connect with someone who is desperate for that connection.

Do it daily. It doesn’t even have to be the same person. And you never know, you might actually like someone you didn’t speak to before.

And when you are doing that regularly, and only then, can you pat yourself on the back for a job well done, a difference made in someone’s life.

Let’s see how many people you can engage in conversation:
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