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

Please stop blaming and punishing

There has been a lot of negative things happening to autistics in the news lately, particularly in Ottawa. Details here. Last week I posted about the second incident on my personal Facebook Page. I was outraged, still am.

For those of you unfamiliar with autism I will break it down as to why I am upset:

1) The student had not one but two unfamiliar assistants. Many autistics need predictability and stability to feel safe. Ever feel a bit unsettled when your normal route to the train was detoured and you couldn’t park in your normal area and you suddenly realize that you might not make your train on time? Now magnify that feeling many times over, and possibly remove the ability to express that feeling with words.

2) The situation happened during the chaotic time between classes when halls were full of people going in random directions and the noise level would be high. Many people feel uncomfortable in crowds but then magnify that feeling many times over and add in the unfamiliar assistants who perhaps don’t know how to remind you to perhaps put your earbuds in and turn on your calming music, or to take you to a quiet spot (the office, a bathroom, a quiet classroom) until the halls start to clear.

3) Add in a vice-principal, who despite an IEP (Individualize Education Plan which is a legal document outlining any accommodations or alternate expectations to ensure a student’s success) that it would be impossible to pretend ignorance of (administration are involved in the IEP process and would be aware that any student with assistants would be required to have one), chose to repeatedly threaten the student with detention. Have you ever had anyone yelling at you threatening you with something that you don’t deserve? What was your inclination? Run, punch them in the face? Cry? Something like that, only you didn’t do it. Or maybe you did. My point is that an already overwhelmed autistic individual was facing these stressors.  This is not an excuse. It simply is.

Had the assistants been familiar with the student they may have been able to prevent the situation in many ways (such as removal from the noise, indicating that they had it under control, reminding the VP that there was no need for threats etc), had the vice-principal been even slightly sympathetic to the situation, had the extra added stress of the car alarm blasting not happened, had any of these things happened, it’s quite likely that the incident would not have played out like it did. But it did. And for some reason, the school liason decided to press criminal charges. WTF?!

As a friend pointed out it is possible that this was done as part of a diversionary program, and upon completion of a program the charges will be dropped. That it might be a way for the courts to jump this child ahead in a wait list for services. If that is the case that could have some very good outcomes. And I do not know that school board. All I can say is that I have not experienced such things in our school board. (again not to say that this doesn’t happen, merely that I haven’t experienced it) BUT, here is what happened in the U.S. And it’s not good- read here.   Further, I had a few comments about how people expected the family to apologize to the vice-principal and that charges were warranted. One commenter actually got quite aggressive after I began deleting comments (it was late and I was tired of arguing at that moment) Although I do feel a meeting between the student and his mother should happen with the vice-principal I do feel it should happen with an autism advocate (such as one from Autism Ontario or Kerry’s Place or another similar organization) and perhaps an autism specialist from the school board (Ours is called the ARTs team -Autism Resource Team and is available for teachers and administration to access for support).

The meeting should be a dissection of what happened and why. And how to prevent it happening again in the future. Healing and learning cannot happen until all who are at fault accept responsibility for their fault. Yes that means the student should reflect on the impulsive reaction to the stressors, but the vice principal also needs to reflect upon the impact of her repeated, loud threats.

At first glance, especially to those unfamiliar with special needs of any kind, the student appears to be the aggressor. On closer inspection of the reported details it becomes quite clear though that he is actually the victim of a series of unfortunate, mostly preventable circumstances. So why then do people wish to punish the victim?

I believe that the answer to that is fear.

Fear of the unknown. Fear of autism. Fear that a student could be stronger than an adult in authority. Fear. Fear. Fear.

My answer to that: Suck it up buttercup. If you don’t know anything about autism then look it up (just please don’t go to Autism Speaks and their fear tactics see why here, please look up a responsible agency such as Autism Ontario or Autistic Self Advocacy Network). Whatever you do, please stop blaming the victim here.

If helping will make you feel more empowered then by all means please help. Help advocate for more supports in our schools. More training for educational staff. More inclusion everywhere.

Just please don’t think that it’s ok to sit back and lay blame and punish a child.

Goodnight Eva

I haven’t written in a while… I’ve been wrapped up in my own stuff and I wasn’t comfortable sharing it with the world via my blog. But, I have kept up with the blogs I follow. I admire anyone who is willing to share their journey with us readers. This attached blog comes directly to my inbox and follows the journey of a mom and her medically fragile daughter. The last post was about her excitement over the new equipment that had just come in (a special high chair) and how her daughter enjoyed sitting in it with the supports she needed. This morning though my inbox contained a post with the unthinkable. Her precious little girl has passed. I feel heartbroken for a family I’ve only ever known online.

What a difference a day makes.

Yesterday I was excited about Eva’s new high chair and today there is no Eva to sit in it.

Last night at around 9pm Eva woke crying. Both I and my amazing and brave housemate Ess went into comfort her. Ess passed her to me and we could tell something wasn’t right. Eva was taking great gasping breaths. Then suddenly she stopped.

She started to turn purple around the lips and it was at that point that Ess took over, putting Eva back down and starting chest compressions. We kept going until the ambulance and fire trucks arrived and then they took over. By 9.30pm they gave up and let my little girl relax.

A simple cold one day, and gone the next.

I don’t have clever metaphors today. I don’t have creative flow or inspired words. I have all encompassing grief that abates…

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Christmas 2014.  
Not one, not two, but three inflatables on our lawn, a random assortment of coloured and white lights and of course a mini van in the driveway.

Never Say Never (Especially When It Comes To Parenting)

2007

Husband to me: “I will never allow a mini van in my driveway.”

Me: “Thank God. I hate those things.”

Christmas 2007

Husband: “I hate those tacky inflatables that people put on their lawns. My house will always have the classic white lights. We can drive around in the evenings so our kids can see those things.”

Me: “Ok.”

Fast Forward to Today:

Christmas 2014.   Not one, not two, but three inflatables on our lawn, a random assortment of coloured and white lights and of course a mini van in the driveway.

Christmas 2014.
Not one, not two, but three inflatables on our lawn, a random assortment of coloured and white lights and of course a mini van in the driveway.

I swear that our names are not Griswald. Honest!

We hope that maybe one day, when our youngest (now 22 months) is old enough that we can go back to the classic white lights, that I can give up the van and drive anything else again…. before we have grandkids!

That time frame could potentially be very small though as by the time our youngest is a teen the older two will be in their mid-twenties… and the cycle will start all over again:)

Just another time where I’ve learned never say never.

The lost month of November

Ok, so that title is a little misleading… but not so much for my blog. You see, with the exception of one blog post, I focused my writing on NaNoWriMo for the third year. And yes I realize that it’s TEN days past the end of NaNo but I needed a bit of a break, and of course am focusing on Christmas too.

Even though my word count did not “win” it was by far my most successful NaNo yet. I wrote almost every day and my total count of 22,559 words was triple what I have achieved in the past. And I managed that with a toddler! (which means of course that my final output is the equivalent of about 100,000 words:)

Part of my success this year was due to the fact that I threw the “rules” out. I’ve always struggled with the idea of mapping out characters, plot lines, chapters etc. While I realize that some people thrive with that, it is way too formal and stifling for me. But, I wasn’t sure how else to do it. Then last spring, I went to see one of my favorite authors Diana Gabaldon talk at the Toronto Reference Library. She is funny, and strong and someone I think I’d really like to get to know. But of course I’m just a fan and had to settle for my 30 second rushed one-sentence to her while she autographed my book. What I learned from her talk though, and something that she reinforced in a Facebook post this week (in an excerpt from a book on writing that she will one day publish) is that not everyone writes the same way. In fact she writes in a non-linear way. Meaning that she starts with an idea and just writes about it, building that scene up until there is no more to write about it. Then she does the same with another scene. Eventually she figures out how to link the scenes together in a book.

I know that the very organized of you out there will be horrified, but to me it was an epiphany. So I wrote and wrote and wrote. I wasn’t stuck on how to start or how to introduce characters and plot. I just wrote about them. And some very interesting things popped up that I hadn’t planned. What fun writing finally in a style that works for me!

My book is nowhere near finished, but I keep going back to it to add more to the scenes or to add another scene. One day when it’s ready I will share details about it here, for now it’s a project that is energizing and fun.

Of course while my mind was focused on writing, I still had to function as a mom, and some days I did that better than others. Some days I like to borrow a term from A Diary of a Mom when I feel like a walking yardsale. You know like the day I sent my daughter to a movie with her friend with a gift card for the show. I was proud of myself for remembering to retrieve the card from the drawer where our gift cards go so that they don’t get lost, but then somehow enter a vortex where they are removed from our memories. What I hadn’t realized when I sent her with it was that somehow the card only had $0.11 on it. Doh! Thankfully the other mom covered my daughter’s shortage with a laugh. Guess I’m taking some kids to the theatre this weekend!

Yep that’s me! I think like most moms I’m barely keeping it together and doing my best to get everyone to where they need to be on time and with food, drink and money. And when we screw up–at least we have great friends who help us out!

Toddlers and Time Change, Kids and Compliance

image is of a calm lake and trees on the far shore. It is peaceful and embodies freedom to me--the right to chose for oneself.

image is of a calm lake and trees on the far shore. It is peaceful and embodies freedom to me–the right to chose for oneself.

It’s been a rough morning, our toddler has not only not adjusted to the time change, his internal clock has been thrown off by two hours! So I am up before 6:00 am most mornings (for those of you who commute and have no sympathy for that time, please keep in mind that I work evenings and well 5:45am is not a very civilized hour no matter how you frame it)

And then, while it was still pitch black our dog was in a panic to go outside. My husband was already gone (did I mention it was his early day, gone before 5:00am?) so I turned on the tv for our toddler (Yeah me-awesome parenting skills!) so that he would stay in my bed while I let her out. I had tried to tell her to be quiet, but dogs don’t speak English (or any human tongue for that matter) so she didn’t stop whining. We’ve learned the hard way that if she’s ever in a panic like this to Let. Her. Out. A nasty case of diarrhea is much better outside than in my front hall.

The dog? She gleefully ran outside barking her head off (sorry neighbours) and running around through my garden. At some point she did relieve herself. I think. A few more piercing barks later, I managed to get her back inside. Where I crawled back into bed with our toddler, whose face was returning to it’s normal colour. Did I forget to mention that he was screaming when he woke this morning and nothing would settle him? Ya sorry about that. He was. And it wasn’t very fun.

Face time with hubby started his tears all over again. Gee thanks kid, I stay home all day and play play-dough and colouring and sing patty-cake with you and he’s the one you want in the morning? I mean I love you all dearly, but give me some credit.

I found some clean clothes to throw on. (Did I mention that we’re trying to take advantage of the mid and low-peak electricity times? Basically it means laundry is supposed to be done while I’m working or running around to dance. Which means a load gets thrown on one night, re-washed the next night and if I manage to stay awake long enough, it gets thrown in the dryer before a third wash. Saves us lots and lots of money-not)

Downstairs wasn’t too bad. There was only one container of rotting food left behind by the oldest one who had excavated it from his backpack somewhere and the middle one came down to make her lunch. Yes I said she was making it–I learned long ago that as long as we provide the materials, our children will eat their lunch far better if they make it rather than us. I merely approve the final product (No you cannot take just an apple for an entire day!). Mind you with the waste that comes back, I shudder to think what would happen if I were to actually make their lunches again.

Then the middle one drops a conversational bomb. Right between buttering her sandwich and reaching for the cheese. “Mom can I wear mascara?”
What? It’s not even 8:15 yet and I feel wrecked. She’s 11, in grade 6. I listened in disbelief to the list of girls she rhymed off who were already wearing it daily. I’m so out of touch.

My first instinct was to stomp down on the notion and say “No way!” but that would just drive her to sneak it to school and put it on there. No I wanted a more respectful conversation than that. I bought myself a few minutes while I made my earl grey tea, and wondered if there was a way to attach an IV of it to my arm.

In the end I asked her why she wanted to wear it. That women wear makeup because they feel it makes them look more pretty. I asked her if she needs to feel more pretty at school. She seemed surprised by the question. You see “everyone” was doing it. I managed not to use the clichéd “If your friends jumped off a bridge would you too?” (you should be proud of me, the caffeine hadn’t kicked in yet and I was working on the fly here) I asked her to think about what it would do for her. After some discussion I suggested that perhaps-not today- that she try wearing it for a week and see what it does. If she feels any different about herself.

She was disappointed that I didn’t give her a straight answer. I’m nervous about even giving part way in. But it was a rational conversation, one with give and take. One that was respectful. You see I don’t want my kids to ever be compliant to what I or any other adult says.

Yes there are always times when they have to do what we say (wearing seatbelts is a good example) but really when we demand that our children hop to attention and do our biding without questioning it, we are setting them up for some seriously bad stuff in their life. We are making them compliant to the demands of bad boss or job, to a disrespectful person or worse to a molester or rapist.

This is a particular concern in the special needs community as an individual may have a harder time distinguishing what is ok from what is “bad.”

Yet I have seen this in my toddler’s classes as well. One class in particular was an art class where the expectations were so far above their abilities that I withdrew and asked for a refund. You see the toddlers were being asked to paint a straight brown line for a tree trunk or to glue the foam pieces in a particular order to make a spaceship. All around the room parents were saying “No, put it here. No not like that!” They were demanding compliance from a child who was unable to comply and worse, unable to say why they couldn’t. Not one child in there giggled or had fun. Now there are a lot of angles and things we can talk about in that scenario, but bear with me as I really want to stick to the compliance theme today.

These children are being taught to do exactly what mom and dad and the teacher says in order to produce something that the adult wants and in order to get praise. At what point do you stop demanding compliance? When do you give your child the right to discuss the pros and cons, to make mistakes to learn how to stand up for themselves?

For me it’s early on. That doesn’t mean it’s ok for my toddler to hit me and refuse to have a poopy diaper changed. But, provided there is time (and hey I’m at home with him, so there’s usually time. Unless we have to be at the studio.) I will give him a couple of minutes to calm down before I change the diaper.

For my daughter it’s about asking her questions that make her think her reasons through. Teaching her to think through why she may want something.

Neither of those is compliance. They are respectful.

Like any mom I’m not perfect, but I don’t want my kids ever to be afraid to say no. They just need to find a reason why.

Please Don’t Dumb My Daughter Down

Build up our children

I have always found it a shame when I have seen girls or women dumbing themselves down, portraying themselves as the stereoptype ditz or bimbo in order to fit in. And I’ve always wondered where it comes from. Especially in light of all the empowerment campaigns we are exposed to.

And then this morning I had a conversation with my daughter. It started talking about where our youngest is with his speech (on track) and the fact that she had been a very early speaker. That she picked up French in the immersion program very quickly and that I could probably throw two more languages at her today and she’d be fluent by Christmas. It’s her thing.

As part of this she has a huge vocabulary. Words have always come out of her mouth in the correct context long before she was “old enough” to use them. We have always encouraged this, teaching her new words and explaining the meaning of anything she (or any of our kids) don’t know.

So you must understand my frustration this morning when she told me that her teacher told her that no one in her class would understand something she had written and that she needed to change the word so they would. The offending word? “Foliage.” As in the “Colours of the foliage in fall.”

]How about “Great word. I’m not sure that everyone knows it though, so how could you add another sentence to teach them that word?” That to me is teaching.

Being told to remove the word is telling my daughter that it’s not ok to have a big vocabulary. It’s not ok to be smart. That she has to dumb herself down to fit in to her class. That dumbing down her vocabulary is the way to get a good mark.

My daughter will always have to fight against assumptions about her. She is a cute blond with an athletic competitive dancer’s body. Who will ever look beyond that when she’s only using the vocabulary of a child? When she’s too afraid to use the words she knows because she may be perceived as “smart” which her teachers have taught her is “bad”.

I told her not to change the word. To add that second sentence. That it’s not her job to dumb her work down. That she is always to do her best, to strive to be better.

I just hope that next time she isn’t intimidated by the teacher. That she has the inner strength to say “No. I will not change my work for the lowest common denominator. I will do my best. And I will teach and share.”

Parenting is hard enough. And now I realize that we can’t just rail against the ridiculous standards of the fashion industry, and the silliness of the pop music industry, we now have to be on guard from the very adults who we are supposed to trust are the role models in our children’s lives.

My message to all of you: Your only role is to build every child up. If in the process of doing this you manage to teach them history and geography, math and science then you are worthy of the title “Teacher.” And as your momma used to say if you can’t say something nice, if you can’t build a child up, then don’t say anything at all.