Unlocking Autism

This is a short clip from 60 Minutes Australia called Unlocking Autism. It centers around Daphne Proietto, a piano teacher who lives just outside Melbourne and teaches autistic kids.



While hardly any comment or perspective comes from the autistic students themselves and there's lot of speculation by NTs, it's sweet that she appears to patiently and respectfully teach them. She doesn't charge for her lessons, which is also very generous of her time.

It made me think about my own experiences with the arts. I was put in ballet because my mother thought it would fix my bad posture (I still have bad posture), and I was forced to take piano lessons because I had "long fingers" which were apparently good for piano playing.

While I quit piano earlier than ballet, I felt very free while dancing - and still do. In the video they talk about music "removing autistic symptoms." I don't really agree with that. I think because I was doing the same thing as everyone else, I was not seen for my weirdness or awkwardness while I was dancing. I was judged solely by my dancing abilities. So it didn't remove my symptoms, it just made them less visible to NTs and they could look beyond whatever ideas they had of me for that time. For a short time, I could be equal.

What do you think? Is Daphne working some sort of healing magic on these kids or are people just perceiving them as special because they're doing something "normal" people do?

#WondrousWednesday - Spectrum Productions

I absolutely love Spectrum Productions. They're a Montreal-based group for Autistic teens/young adults to get experience with film production and just have a good time. They learn all aspects of production - sound, animation, and even some acting! They used to be called Camera Roll Productions and changed their name just recently.

You can check out their trailer and I posted some of my favourite videos they've made so far:

Go Like them on Facebook!

Autism and ABA

I get a lot of questions related to ABA and why I don't support it.

For starters, I have never personally experienced ABA therapy. I've never experienced any autism-related therapy actually, though I would like to go to OT. I do get regular massages for my SPD.

My son has also not experienced ABA. While it was of course recommended when he first got his diagnosis, and it would be freely provided by my province's government, I just didn't feel right about it. I figured he will not end up worse than me as an adult. I also did not like the very "business" feeling I got when I called for services. The amount of hours they suggested just didn't jibe with me and how I wanted him to have a mostly "normal" childhood, not one filled with hours upon hours of therapy.

He had weekly speech therapy (still does) and before he started daycare, we spent our days playing and exploring the world. That was therapy enough for us, in my opinion.

I get my arguments against ABA from autistic adults (and teens) who have experienced it and felt abused by it. I am very uneasy about a lot of the techniques and the dialogue ABA professionals use. Things like "putting that behaviour on extinction" and ignoring the child until the child complies in a neurotypical/stereotypical way.

I also was very close to my ex-boyfriend's autistic brother. He was forever questioning how he felt or how he should behave. Everything was formulaic for him and he did not feel like he could think for himself. I feel that ABA makes people into robots. Socially acceptable robots.

I want my child to be able to think for himself. I don't want him to do things out of motivation for a candy. I don't want him to ignore his own needs in order to satisfy someone else. What happens when someone offers him a candy to touch his genitals? What happens when someone wants to pressure him to take drugs or commit a crime? A robot would comply. This is a major fear of mine.

ABA purports that autism is a behaviour disorder. It's not. Autism is a developmental disability.
The behaviours may not be neurotypical and may not be socially accepted, but that doesn't make them automatically wrong or a problem that needs to be fixed.

Also, the goal of ABA is to make the child "indistinguishable from typical peers" and attend regular school "without any supports." I do not share this goal or desire for my child.

If you can, please take the time to read autistic people's firsthand experiences with ABA. I am thankful to these people who have taken the time to inform us about what they went through so that others won't have to. I think you can appreciate their bravery, despite many wanting to silence them and the pain it must have caused them to relive these moments.

http://timetolisten.blogspot.ca/2014/03/conditioned-eye-contact.html

http://unstrangemind.wordpress.com/2013/01/27/no-you-dont/

http://juststimming.wordpress.com/2011/10/05/quiet-hands/

http://loveexplosions.net/2013/09/15/touch-nose-gummi-bear-what-is-aba-and-why-does-it-suck/

A whole series devoted to ABA on Emma's Hope Book.

http://thequeeraspie.blogspot.ca/2013/07/why-aba-therapy-unsettles-me.html

The creator of ABA, Dr. Lovaas, advocated slapping and shocking the children into compliance: http://neurodiversity.com/library_screams_1965.html

NOTE 1: If you are a parent and you currently have your child in ABA and you no longer agree with it, it's not too late to stop now and change course. When we know better, we do better. Don't feel guilty about that, just move on and continue to do your best with what you know.

NOTE 2: If you are a professional who wants to stand up FOR ABA, your comments are not welcome here and will be deleted if you even bother. This is not up for debate.

NOTE 3: If you know of any other posts similar to those above, feel free to comment and I will add them.

Fixing Behaviours

Oh boy, I get a lot of juicy post ideas from some of the parenting groups I'm on.

One was about her ASD son doing a specific behaviour. He's young and when she asked why he does it, he said it's because he likes it. She then asked the community, "how do I stop it?"

Well, the first question out of my mouth was, "if he says he likes it, why do you want to stop it?"

To which she replied, "good question! Maybe other people won't like it. It doesn't actually bother me when I think about it."

So what's the problem?

Here we have a trap a lot of parents fall into:
child is doing something different from others, therefore it must be stopped!
There's this whole school of thought about fixing behaviours.

But guess what? You don't have to like every single thing your child does. Do you know why? Because they're not mini YOU. They are their own person and they get to have different likes and dislikes. I bet they don't like everything about you either. Tough.

You also are not required to control every single little thing they do. You don't. You have your own life to live and you should value your time. Micromanaging your kid's behaviours probably isn't the best use of your time, especially when it doesn't actually harm anyone.

So my solution for the above mother: talk to him! Tell him you understand he likes doing this thing, but that not everyone will appreciate it. So he should only do this thing he likes with other people who like it. This way you are explaining to him how to respect other people's space/needs without actually stopping or shaming his enjoyment in said activity.

Again, as long as he is not hurting anyone, including himself, and he truly is enjoy it, then why not let him enjoy his life?

Besides, what else is childhood for if it's not for exploration and discovery? It won't be long until he's into something else. Not every behaviour needs to be "fixed."

Autism Parenting Magazine Disappoints

A fellow Autistic blogger, M Kelter, alerted me last week that he is no longer contributing to Autism Parenting Magazine because this month's issue includes coverage on a "curebie" doctor. You need a subscription to see the full issue, but you can see the list of contents on their site.

(If you know me by now, you know I don't provide a voice or links to things I don't agree with, so you'll have to do your own research - besides, I think that is better than just listening to my opinion! So while I will tell my story, I will not name names. I don't believe in giving these people a forum or space on my blog.)

So this particular doctor is a doctor of engineering, but since his daughter was diagnosed as autistic, he suddenly became some sort of biological expert. He no longer gets her vaccinated (he believes vaccines caused her autism) and he believes some sort of mixture of vitamins/supplements will "cure" her.

So after M Kelter informed me of his decision to cut ties with the magazine, I tweeted them to ask why they were including an anti-vaxxer in their magazine. To my great disappointment, they never replied to me. They did speak to him and said it was a matter of a difference of opinion. I'm sorry (actually, I'm not) this particular difference of opinion not only hurts Autistics, but it hurts all of society.

I don't believe you can seriously say you are working in the best interests of autistic people while simultaneously advocating for their "cure."

Also, when "treatments" become a matter of opinion and not based on actual reputable and real scientific facts, you have a great possibility for harm. I mean, I could say I believe eating worms is more effective than brushing my teeth, but that doesn't suddenly make it right, no matter how educated I am.

Why is it ok to experiment on Autistic people? I'm pretty sure most of us these kids didn't sign up to be test subjects. Meanwhile "doctors" and parents think it's totally cool to inject their Autistic kid with B12 in their ass in the middle of the night because CURE.

Not cool, Doc, not cool. Stick to building roads or bridges or whatever kind of engineering you were actually trained for. Shame on Autism Parenting Mag for giving a voice to a quack.

Autism and Faceblindness

A fuzzy blurred out face to depict faceblindness

A lot of Autistic people are already socially awkward in general (like me!) but another aspect that some of us suffer from is faceblindness. This doesn’t mean we don’t see faces at all, it just often means we sometimes don’t recognize people we’ve met before. One thing I know I do, and studies have confirmed, is we often look at parts of faces rather than whole faces. A lot of the time I look at mouths and noses instead of eyes. It’s less stressful to look at eyes and looking at a mouth actually helps me understand what is being said. I’m not that bad at reading lips because of this.

I'm not sure if I suffer from faceblindness per se, but there are times I don’t initially recognize people. I can see someone and then doubt that I know them. Or if they look like someone else, I won’t be sure they are the right person. Staring in order to try to decipher this is not usually socially acceptable, so either I shy away and don’t say “hi,” or I say “hi” to people I don’t know. If I have made the wrong choice, then I can look like I’m ignoring someone I do know, or just really friendly and weird (because here in the big city, we don’t usually say hello to people we don’t know). Luckily, most people I have met before are quicker than me at recognition and will say hi first, but then it can take me a minute to place who they are.

At the same time, I can sometimes know I’ve met someone before and cannot for the life of me remember their name or where I met them. Then I sit there trying to figure out where I’ve met them. Other times I can totally remember names, but not the face. My facial recognition skills are totally unreliable and inconsistent. I may recognize people within the same context, like my office for example. If I see them outside of work, I may not.

I have inadvertently insulted many people by not immediately recognizing them or remembering where/when I met them. It’s a shame because we can get along and have a great conversation, but then I can accidentally ruin it when we meet again. I have spent evenings talking to people and when I get home, I see a friend request on Facebook and can’t for the life of me figure out who they are. It’s embarrassing. Maybe I should warn people up front that I have this problem so they hopefully won’t think I’m slighting them. I read Brad Pitt tried that, but no one believed him and they felt insulted anyway. Then again, I'm not Brad Pitt, so I may give it a try.


As with many things, it's best to give others the benefit of the doubt. It's not about you or an insult if someone doesn't recognize you, even if you've spoken many times.

Here’s the Wikipedia entry on faceblindness and here’s a little test you can do to see if you suffer from it.

We Used to Fear He Would Be Non-Verbal

It wasn't until last year that the Little Man started speaking sentences, and even then, only we could understand him (and only sometimes). That's not so much an autism thing, but an apraxia thing. I mention it also because not a lot of people, including professionals, know about Childhood Apraxia of Speech (CAS). It's a motor-planning speech disorder. Therapy helps, but it will never go away completely. It means, for the most part, he understands very well, but his body is not reliable when trying to express what is in his brain. The whole body type of this condition is called dyspraxia, which he also shows symptoms of. In fact, I often believe his apraxia/dyspraxia is more challenging to him than autism is. It is quite a double-whammy of communication challenges.

Anyhow, we were at some point very concerned and thought maybe he would never be able to make himself understood verbally. With lots of speech therapy, he went through a huge leap in development and now speaks TONS. I have yet to capture one of his amazing monologues on video (he tends to get shy around cameras) but I can try to capture his more verbal moments by writing them out from memory.

Here are two recent events where he got really excited and the words just came flowing out.


I took him with me to the garage to get the tires changed:
"I love this place! We need these tires! We need these...things! (Those are rims) We need those rims! (Those are too big for our car). Oh we need these ones. What are those? (Those are windshield wipers) Look at them! They cost $150. (No, those are 15" blades) Oh my GOD! There are magazines here with monster trucks! I love monster trucks!"

I took him to his great-great aunt's house for her birthday:
"I love your place. I love your door, there's a flower on it. Oh look, you have a table. She is in this house again (This is Aunties' house. She lives here). It's your birthday. I made a blueberry cake for you. You need to eat it now! Eat it, eat it! You want to share with me!"

LOL. This kid cracks me up and I enjoy every moment. Believe me, after being silent for so long, we never tell him to stop talking. 

How To Deal With Repetitive Questions

When I was a kid, I used to ask, "what time is it?" all day long. I knew what time lunch was at. I knew what time certain shows were on. I knew what time my sister came home from school. I knew what time mom came home from work. Therefore knowing the time helped me organize my daily schedule and know what to expect. My father did not understand this. He could not understand why a four year old, who couldn't read the time off a clock face, would need to know what time it was. My repetitive "what time is it?" questions made him frustrated and they interrupted his writing and thought process. He couldn't take it anymore so he bought me a digital watch. I laugh now, looking back, but really, they could have just made a visual schedule and hung it up in the house. The goal, however, was not to help me satisfy my need for consistency or reassurance, it was to shut me up. Plain and simple.

While my mom was making supper, I would often ask her repeatedly what she was making. I often forgot that I just asked two minutes before. It wasn't until she reminded me that I had already asked her at least five times that I was able to realize what was happening. Over time and through her annoyance with me, I was able to figure out that asking repetitive questions was annoying. I was asking for reassurance that she could not or would not provide me.

People often say there is, "no such thing as a stupid question." Oh yes there is, if no one has the patience to explain things to you!

As a child, I wasn't always asking the question I needed the answer to. Sometimes it's hard to put into words what we really need. Asking repetitive questions, as a child, was about looking for certainty, predictability, and reassurance that things were under control. I needed to know the same things were happening, at around the same times, every day. Without that info, I felt anxious. 

So fast forward to the present, with my own son occasionally asking repetitive questions. It doesn't happen often, because I'm in the habit of narrating his days. When saying goodnight, I tell him what's happening tomorrow. In the morning when he wakes up, I tell him our plans for the day. It commonly goes like this: "hey, it's time to get up and start our day! It's a nice day. It's Tuesday. We're going to have some breakfast and then we'll get dressed. Today you're going to take the bus to school. Then the bus will bring you home and Dada will be here. Dada will make you supper and then I will come home. Then you'll have your bath and get ready for bed!"

I do that every day.

At school, I know they have visual schedules to help them out with their days. I've run into problems at daycare recently where the worker did not think to just answer his questions when he asked them, which led to anxiety on his part. 

The point is, a child is not asking a question over and over to be annoying. They're looking for bits of information to make their world make sense. If I start getting repetitive questions, I know I need to offer more info. I know that somewhere along the line, I have failed to provide either the structure, information or reassurance my child needs. Yes, that's right, it is my responsibility to help my child regulate until he is able to do so independently.

I, as an adult, still sometimes ask repetitive questions. I honestly don't remember asking over and over until someone tells me. But when I do, I know it's because there is something underlying that question and I need more info so as to control my anxiety. 

How To Explain Autism to a 5 Year Old

I've seen a lot of talk recently about people debating if and when they should disclose their child's autism diagnosis to them. I am firmly in the disclosure camp, and the sooner the better.

I'll use an analogy to explain why. Let's pretend autism isn't in your brain, but a differently coloured ear that hears differently. Kids don't really notice colour, but they do notice differences. So they see their two ears, but one is blue. No one else in their family has a blue ear and they can see that. This blue ear means they hear things at a different pitch from non-blue ear people. They can still hear just as well, but the pitch is off, which means sometimes sounds get scrambled. They can see other non-blue ear people have entertaining conversations and laughing, but they can't always follow. They start to feel left out. People assume the blue-eared people don't understand, so they simply stop including them. The blue-eared person starts to wonder what is wrong with them. They think they are flawed.
Keep in mind, there is nothing inherently wrong with the blue-eared people, they just hear slightly differently. With time, they can also be taught to hear different pitches differently, or people make an effort to adjust their pitch for the blue-eared people.

Snap back to reality and autism is no longer about blue-eared people, but I hope the above makes some sense. In general, when you don't explain why someone is different and what that means, the conclusion a child will almost always make is that there is something wrong. Children take on a whole lot of different emotions and issues that have nothing to do with them. The same way a child will blame itself for a parent's divorce, they will blame themselves when they have problems understanding or making friends, unless you explicitly clarify things for them. (And even then, they still might, but you can at least try to make sure they don't blame themselves)

Explaining autism to them - both the gifts and the downsides - gives them the language they need to explain it to others. Over time, it will give them the confidence to be able to advocate for themselves. Unfortunately, as much as we would like to, we will not always be there for our children and they will have to face this world without us. They need the tools to be able to have their needs met when you're not able to fight for them.

So how to do explain autism? Well, I use opportunities to slip in little factoids now and then. If we're waiting for the bus and have nothing else to do, I say, "hey, do you know you're Autistic?"
He usually says, "yeah" now. "You know it means your brain works differently from other people's?"
Sometimes I tell him my brain is like his, but not dad's. Sometimes I tell him it's why he struggles with some things, but also has an amazing eye for details.
Then I leave it at that. Because at his age, I don't think he needs tons of details. He just needs to start learning the vocabulary, and to know there's nothing bad or wrong about him, just different.

I think about how I grew up without a diagnosis and how confusing it was for me. I blamed myself for so many things. I don't want him to have that experience. Knowing how his brain works means he can work with it, rather than against it, and he can learn tools or coping skills to be more effective.

Explaining autism (or Down's, or SPD, or Apraxia) is not a one-time thing. It's an on-going dialogue based on acceptance and trust.

How I Knew Something Wasn't Right

I pretty much started this blog after the Little Man got his autism diagnosis. Not to say everything was peachy before then, but I wasn't chronicling our experience at the time. Every now and then people ask me, "what were the signs? How did you know?"

Honestly, I didn't know. We knew something was very different about our son, but not what exactly. Actually, because doctors were giving us a hard time, we thought there might be something wrong with us!

First off, I speak from a position of great privilege - I have a degree in Linguistics. Because of my degree, I studied language acquisition and childhood development. I studied the brain and learning disabilities. I then volunteered with Deaf children and learned speech therapy techniques. So I had some experience working with non-verbal children and what "normal" development should be like.

From the beginning, my son was not "normal." As a newborn, he was very alert, like a wise old soul. This was when he was quiet, but otherwise he was screaming. When quiet, he stared at lights and didn't look at us much. We called his name and he did not respond. We actually thought he may be deaf, so we had his hearing tested. It was fine.

His head grew very large, very quickly (a sign of autism for some), so we had that monitored. He seemed to space out now and then, so we had him tested for epilepsy. Nothing there.
He made a few noises, but didn't babble. He drooled a lot and flapped when excited.

For me though, the biggest red flag was the lack of speech. Because of what I learned about speech therapy, I was using elicitation techniques with him from birth. He never imitated us. We did baby sign, which he responded to pretty well. We could tell he understood us, but wasn't reciprocating.

He sat quietly and spun the wheels of his trains. He got down on the floor to look at the wheels move. He flicked his fingers in front of his eyes. When we took him to the park, all he did was sit in the sand and run the sand through his fingers and squeal loudly. We couldn't put him on the slide. If I stuck him in the swing, he sat passively, as if waiting for it to be over.

Aside from not speaking, he couldn't eat food. He was constantly putting stuff in his mouth, but not food. He would choke and gag on the baby food. Or he would shove a whole bunch of something in his mouth and hold it there. (That's more SPD and Apraxia than autism)

So I took him to a bunch of doctors with these issues and was spoken to like I was crazy, like I was doing something wrong to cause these things. What parent doesn't want their kid to eat? All he would eat were crunchy things that would melt in his mouth so he could swallow them whole without chewing.

It wasn't til he was over two and a half that he got diagnosed as autistic. It wasn't until he was over three that we got the Apraxia diagnosis. Not for lack of trying!

I wish doctors understood the power of a mother's intuition. No one wants there to be something wrong with their kid. We all want our kid's lives to be easy.  I wish simple things did not have to be a struggle for him. That doesn't mean I don't accept him as he is, where he is right now. If his path could be easier, I would welcome it. I think any parent can relate to that. I wish doctors did also. When a parent comes with concerns, they need to be taken seriously. I know my child best. You know yours. If you are concerned about your child, keep fighting, keep searching until someone hears you. 

Autism Is Not A Crime

If you've seen the news lately, you've heard the heinous crime committed by a young man who killed six people in a drive-by shooting in the US. My policy in this blog is I don't mention murderers by name, because I don't believe they deserve any more press or notoriety. I choose to focus on victims. Also a shame that this blog has already covered so many murders.

My issue at the moment with this particular murder is how the media has chosen to portray him. It is obvious from his videos prior that he was disturbed and troubled. Unfortunately, the fact his parents merely suspected he had Asperger's was enough to get the media to decide he was actually diagnosed as such. So it's important to note that his parents are not psychologists. He was apparently in therapy, but no diagnosis of Asperger's or ASD had been made.

What is even worse is that his parents were disturbed by the videos he made and contacted police. Police decided he posed no harm. Aside from his own crime, the negligence of the police to take these threats seriously is also a huge failing.

It should be noted that there is no correlation between violent crime and ASD. It should be noted a person with an ASD is much more likely to be a victim of violent crime.

Just for fun, let's entertain the possibility that he had Asperger's. I would argue he also had something else wrong with him that prompted him to murder, but Asperger's alone would not do it.

Being socially awkward or inept or different, is not a crime.

The media does not think of the ramifications of what having a stigma of "violent murderer" attached to "people with ASD" can do to us. It places us in increased danger for harassment and ostracization. They are contributing to the myths and misunderstandings that already surround us.

Let's put the blame on the murderer. Let's put the blame on the police. Let's not put the blame on a subset of the population who haven't done anything other than have a different brain.

This post is a contribution to the Autism Is Not A Crime Flashblog.

Tracers, Auras and Other Sensory Overload Experiences

Mashable put together a nice collection of autistic/sensory overload experiences on video. Each video tries to simulate what it's like to be autistic. It's really hard to capture sensory experiences on video - it's the sort of thing where it would be great if people could just spend time in each other's heads. But since we can't, these videos are close enough.

I especially like the taking a walk and Wal-Mart visit videos. My vision does not become as blurry though. For me, I see what I call "tracers" and "auras" (and not the fancy coloured New Agey auras). Also, these experiences are not as fun as they might sound!

Auras are easy enough to describe. It's a fuzzy glowing light, a halo, around people and things. Everything.

Tracers are like a bad seventies music video where lines of light follow any movement of a person or object. So, let's say I were to wave my hand in front of my face. There would be hundreds of hands just like it, like a paper fan spreading out, following its movement.

I also sometimes see flashes of light go past my eyes. I have had my eyes checked by an ophthalmologist and I have had brain scans. There is nothing physically wrong or different to explain why I have these experiences. It's just crazy sensory overload.

Seeing either or both of them usually mean I am tired and/or over stimulated and need to get away to a quiet place quickly. If stuck, I will become dizzy, get a headache and then nauseated. My body will start to ache. This happens often in shopping malls, especially crowded ones. I cannot think straight.

Because of this, I usually stick to small stores. I do a lot of my shopping online. I also completely refuse to buy Christmas presents for anyone but children now - you will not see me in a store at holiday time! Instead I "gift" donations to charities of people's choice - again something easily done with a credit card online and I'm also doing something good. North Americans have too much stuff anyway.

Looking at me, you wouldn't think or know anything is wrong. I continue walking around like nothing is happening, maybe rubbing my eyes more than usual. I may have to concentrate more on where I'm going so I don't run into things and this might make it harder to approach me. I typically don't want my thoughts disturbed, so those people in malls trying to get you to sample something are even more annoying to me.

Add to that the annoying mall "muzzak" and scents from perfume, soap or candle shops and I start getting agitated. Basically, if I have to go to a mall, I run in and run out, getting only what I really need, so I don't get to the overload point. Knowing my limits and having them respected is really important to being able to be productive. Otherwise I could be ruined for days.

How My ASD Diagnosis Changed Me

It has been just over six months since I got my official ASD diagnosis. It feels longer for some reason, but not in a bad way. It's amazing how much I've changed in the last six months.

I have embraced my diagnosis with open arms, using it as a catalyst for self-discovery and new levels of self-awareness. Mostly, I have felt empowered by it. I feel authentic. I no longer feel ashamed of myself and because of that, I feel I can live more like my true self. I am allowing myself to be me, just the way I am, without negative judgment. And that is so freeing.

I know a lot of people say they feel like diagnosis makes them "act more autistic." I guess I can say a similar thing, in the sense that I am allowing myself to be naturally, quirky me. I no longer try to hide my stims. I accept them as needed and helpful, for the most part.

I "came out" at work, which has been both good and bad. Good because it has given me a way to fight for acceptance and bad in the sense there is still a lack of understanding of what it really means to be Autistic. However, I guess I can't accomplish everything in six short months. Still, there is hope for improvements and I don't regret doing it.

I have felt more empowered to stand up for myself and my family. I would have said I was always a strong person, but truthfully, I lacked certain skills when it came to dealing with my mom. I came to the realization that I was still doing things simply to "keep the peace" or make her happy at the expense of myself and my family. I finally found the courage to put my foot down. Case in point, normally I would have gone to her place for Easter dinner, not because that's what I want, but because it would be what *she* wants and I would suffer through it. She is just a very negative and controlling person and being around her makes me anxious a lot of the time. I refused to go, which of course made her angry, but she'll get over it. Instead of turning my life into chaos and bending over backwards to make it work for her, I've had a very relaxing weekend with my little family at home. That peace of mind is priceless.

I have become better able to let anxiety and other stressful emotions wash over me, rather than panic. I think understanding that my anxiety stemmed mostly from over-stimulation of the senses and learning to listen to and accept my limits, means that I am a much happier and calmer person. Before I didn't really understand what I was panicking about, which can be pretty scary. Now I am more aware of my sensory issues and finding ways to work with them. I accept that I can take time-outs for myself and I can find ways to recharge and cope. I no longer blame myself for what I previously perceived to be "failings" or "weakness."

On this day, which also happens to be my 13th handfasting anniversary, I think back to the vows we wrote for each other. One line was, "to delight in who you are becoming." We knew over time we would both change and we decided to accept that off the bat. I know my husband still delights in what I am becoming and I delight in his changes as well. But I can also say that I am also taking great delight in who I am becoming.

As I sit perched in my new hanging chair - which my husband worked hard to mount for me, knowing it would calm my sensory issues - I can't help but delight in the whole process of becoming more me. 

Easter Is Illogical

Up until now, we've mostly managed to not have to explain religious holidays or traditions that involve a lot of candy/sugar. Mostly because we're not religious and I also don't see a point in giving my kid tons of candy for no good reason (is there ever a good reason?).

However, we haven't kept him in a bubble, so he knows about Santa Claus and the Easter Bunny because of school. He didn't remember the name of Easter, so he was referring to it as "special day."
I finally figured out he was talking about Easter, so I gave him the name and The Little Man asked, "what's that?"
I said, "there's a bunny who gives out eggs and you have to find them."

"No," he said, "bunnies don't lay eggs. Chickens have eggs."

"Yes, I know. Logically, bunnies do not have eggs but for Easter they do for some reason and the eggs are filled with treats."

"Ok," he says, "the eggs will have butterflies in them."

"Fair enough. If bunnies can lay eggs, then it follows that the eggs can have butterflies."

Luckily, the Dollar Store sells little foam butterflies so I will stick some in plastic eggs for him. If that's what the man expects to find then I shall do it!

It probably would have been less trouble to just say no, this is how it is, but it's probably more fun to just encourage his own imagination and play along with it. There's plenty of time as an adult to get your crazy ideas and dreams squashed. 

Brushing Protocol

Our Therapressure therapy brush

We've been doing the Wilbarger Brushing Protocol with the Little Man for almost a month now. The Wilbarger Brushing Protocol, also known as the "Brushing program," or just brushing, for short, is a therapy for sensory processing issues that was created by occupational therapist, Patricia Wilbarger.

It's used for people who are tactile defensive, and can be part of a wholistic sensory diet.

The Little Man is an interesting mix of sensory seeking and defensive, and it contributes greatly to his anxiety. It has caused a lot of problems with eating (limited textures, gagging), speech and general motor skills.

The therapy consists of brushing the person with a soft-bristled therapy brush roughly every two hours each day for a few weeks. This is followed by gentle joint compression. It takes 2-3 minutes to do and feels like a nice massage. It is taught by an OT to the parents and teachers who will do it, so that we know it is done correctly. (There are some videos out there that show people the technique, but I don't think it's a great idea to do it without professional help since doing it wrong can actually feel very uncomfortable and make someone more tactile defensive!)

After 2-3 weeks of daily therapy, the OT will re-assess the person and see whether it should be continued or tapered off.

I had heard a bit about it before this was proposed for the Little Man (it was proposed for me and my SPD, but I couldn't find an OT to teach me when I looked). There's not tons of science or studies backing this practice up. Nevertheless, we went into it with an open mind, figuring it doesn't hurt anyone (it feels really nice actually!) and the brush cost us $5.

Our OT set up the schedule and with the help of the staff at school, we've been doing it daily on the Little Man. To our great surprise, we've noticed A LOT of changes very quickly.

Since we started the brushing protocol, he's been:

-more calm, will sit with us
-asks for hugs
-sleeps better
-eats better (larger quantities and more textures)
-talks more
-drinks water (!!  From a cup!!)
-more focused
-seems less anxious
-seems more confident
-more self-aware when upset and able to let us know verbally

I think that him being less anxious means he is better able to relax and eat. I know I spent a great deal of my childhood very anxious and eating was very anxiety-provoking to me. Also, when you can't handle all the different things assaulting your senses all at once, it's hard to find a sense of predictability or stability in the world. The world feels very dangerous to someone with SPD - or at least it did for me growing up and I'm pretty sure my son has experienced a similar sentiment.

As a bonus, the Little Man seems to really enjoy being brushed and the OT agrees with the results we've been seeing, so we're going to continue for the next few weeks.

If you know a person who is tactile defensive with Sensory Processing Disorder and/or is Autistic, brushing is a therapy that doesn't take a lot of time or investment to try and see if it will help. It's just one part of a well-rounded OT program and easy to do at home.

As for me, I need to book more massage appointments for myself :)

Too Much Interest?

I try not to judge other people's parenting too much, but this is something I just can't wrap my head around. There seems to be a certain subset of parents and therapists who believe a person can be "too interested" in something. So when this person becomes too interested, they take the thing they like the most away completely, or use it as a bribe and method to exert control over the other person. Just writing that out sounds icky to me.

There seems to be a belief that if someone becomes too attached to something, they will not learn to appreciate anything else. This is pretty ridiculous to me as a concept. People should be allowed to have preferences. I believe in teaching and introducing different concepts/toys/music/food/etc, but in the end, people will pick what they like best.

At the same time, there are times when society distinctly sees attachment to one thing as beneficial. The concept of monogamy functions in this way (I love you and no one else!), as does having a major in university (I will focus my studies!).

When it comes to the autistic brain, having an interest or strong preference brings comfort and control. When I know something, I know every single detail about it. The process of researching or getting to know a subject is fascinating, engrossing and relaxing. Some might say stimulating as well. Really knowing one thing makes that thing predictable. It is a way to feel some sense of control over an overwhelming and unpredictable world.

As a child, I was fascinated with how machines worked. I took things apart to study them and their inner workings closely. I could sit engrossed for hours. To this day, I can still sit for hours at my computer, completely focused. I get up to eat and pee. Often, I put both of those things off for as long as possible.
When it comes to my work life, this focus is beneficial. I will sit and plug away methodically until a task is done. I don't need breaks. I don't socialize. I don't waste time. I just work until it's time to go home. Then I happily return the next day. And I think the point is, while others would find this routine horrible, I'm quite happy. I take pride in my work and I like the fact I have this focus and methodical nature.

My son loves trains. Before he was born, I decorated his room with a jungle theme. I bought him stuffed giraffes and monkeys, and there were lions, tigers and elephants on his wall. However, he discovered trains and that was it. My decor ideas were thrown out the window and I bought Thomas decals instead. He can sit for hours playing with trains or watching train videos. He can name and identify all different types of trains. He can make different train sounds with his voice (it's pretty amazing actually, how real they sound). I have introduced him to other toys, but in the end, he still falls back on his trains. I know he is really happy. I don't really understand why someone would want to take away what makes their child the happiest in the world. Are they jealous?

Children are people. People who have interests that differ from yours. You may not be interested in the same things. That is ok, because each child is their own person and they are not extensions of you. Just like you can really love a certain TV series and get totally wrapped up in it, but still keep your day job, a child can be totally into one subject and still grow up and do other things. Having a singular interest as a child does not stop them from learning. Having a singular interest is not in competition for your love. Unless the interest causes real harm, even if you're not into it, sometimes as a parent (and being a mature, well-adjusted adult) you have to watch Dora the Explorer 15 hundred million times because it makes your child happy and comforted. In which case, put in some ear plugs and pull out that book you've read five times already.

A Review of Neurotypical

We watched the documentary Neurotypical recently. It doesn't tell you until the end who is NT and who is not (although in some cases, it's easy to tell and some self-disclose during). I think it should be a must watch for everyone, because I think some people might be surprised to see who was Autistic and who isn't. Also, I'm sure a lot of people would be surprised to see how "normal" they looked and expressed themselves.

The documentary begins telling stories of Autistics in water - the joy and calmness it can bring, along with the perils. It flows into stories of more daily life experiences and allows Autistics to speak for themselves.

I had read a fair bit about the documentary before watching it. One person in it was not happy with how they were portrayed. I won't name names, but it's easily found on the web if you're interested. So I went into knowing there may have still been a bias in the film maker and kept an open mind.

Overall, I think it's something I would be happy to show my son when he's a bit older. It's important to me that he is exposed to a wide variety of role models and understand neurodiversity. He needs to learn to understand not just his own brain, but those of others. I think Neurotypical does a pretty good job of letting people into different brains for a short time. 

#WondrousWednesdays - Autism Acceptance Interview

Paula is a great Autistic Advocate and she interviewed me for her Interview With Autistics Series. Read all about me here! 

 You should check out the other interviews along with the work she has put into Autism Acceptance - which started as a day, then became a month and then a whole decade. Hopefully by the end of this decade, we'll be further ahead. There's also my post on why we need more acceptance and not awareness. April is coming up and it's considered "Autism Awareness Month" - we need to counter the fear-mongering press with acceptance. 

A Typical Day Makes Us Different

I've never raised an NT child, so I can't tell you the differences, but I do know we have some differences, so I thought I would give people an overview of my typical day so you can walk in our shoes a little bit.
Maybe we can compare notes.

Hubby gets up and heads out for work a full hour before we have to be up, so we don't usually talk or even see each other.

I try to get up a bit before the Little Man, but usually am too lazy. Some days, he comes into my bed and we snuggle a bit before getting up for real. Other days, I go to his room and s l o w l y wake him up. If I try to do anything too quickly, it will result in tears and screaming. I plan this time into our morning routine. Being rushed is never a good idea. (Note: we are both really NOT morning people)

Together we go downstairs and I get him his breakfast. He usually gets out his iPad or some trains. iPad days are good days, because it means he is calm and will leave it easily. Train days mean he wants to stay home and I will have a hard time getting him out the door.
Regardless, I give several warnings and repeat the same things every morning, "drink your milk, mama is going to take a shower, then we'll get dressed for school."
On a good day, there is no verbal response to this. On a bad day, he starts making grumpy noises. On a really good day, he tells me he is excited to go to school.

I get out of the shower and start getting him dressed. This also comes with many warnings, "ok, time to get dressed!" in a cheery voice, because he doesn't like changing clothes. Sometimes he fights this process (there's some anxiety I have to calm), but most days this goes smoothly. On the flip side, he can start getting really stimulated and start jumping up and down and flapping, and that makes it really challenging to dress him.
In the winter it's worse, because we have to do snowpants, jacket, boots, scarf, hat, mitts and this adds time to the preparation. Many times the bus has showed up and I'm still on the snowpants stage with him. Luckily, our bus only serves our special needs school and the bus driver totally understands the need to not rush this. I call her on the phone and she waits for us if we're running behind.

Once the bus has taken him, I go in and make myself breakfast and lunch and head straight to work.

At work, I worry that I'll get a call from the school (doesn't every parent? Will he have an accident? Is everything ok?) so I keep my cell with me at all times.

I then use my breaks to make calls - and there are almost always calls to make! Set up appointments, call government services to check on paperwork or applications, talk to social workers, get info for more services...I feel like this part of my parenting job never ends. If it's not calls, it's submitting insurance claims. I think this is something other parents rarely have to think about.

Hubby gets back from work in time for the school bus to drop the Little Man off at home. They make and eat dinner before I get home. By the time I get home in the evening, they are getting ready for bath time. I read and respond to his school communication book, have dinner by myself usually (unless Hubby hasn't eaten yet) and make his lunch for the next day. I run the dishwasher or do laundry while they're in the bath. I check the calendar and see what appointments, phone calls or paperwork is coming up in the next few days.

I then have a bit of time to play with the Little Man before bed. We do the bed time count down - he needs to put away his toys before bed, and this is where we can get a lot of resistance. Actually, there's also resistance to get into the bath, so again, everything comes with warnings and countdowns in order to prevent tears and screaming. On days he is really resistant, we have to take the time to ask and figure out what is causing the resistance (there is always a reason). We have a great technique we learned where you have the child come up with the solution. It's really great because it gives them not only a sense of control, but tools to problem solve independently.

Again, this all takes planning and time, so it's not for the rushed. Basically, we make sure to always allow time to transition tasks and explain the need for each task or transition. The only time I would rush him anywhere is if the house were burning down and I had to get him out. In that case, I would just grab him and run.

We don't rush and we explain every step of the daily schedule, and I believe that is why we have a child who very rarely meltdowns. Sure, he can have a tantrum, but not usually a total meltdown.

Hubby usually does most of the bedtime routine - they read books and I tell him the plan for the next day, example, "tomorrow is Thursday and you have school. I will be here with you, but Dada will be at work. Dada will see you when you get home from school."

After he's in bed, Hubby and I try to get a few spare moments to actually talk to each other, lol! At the moment our big concern is what will do with him over the summer break. His school ends earlier than all the others and camps don't start until the regular schools are finished. Then there's the issue of finding English services that will take a special needs child. This is probably my biggest stress right now. While parents of NTs can pretty much pick any camp or babysitter available, we have to look for more specific services where we know (or hope) he'll have more supervision - and that all comes at a cost also.

And then we go to bed and start all over again!

Rachel At Risk

I went to see a play called Rachel At Risk Tuesday night. Here's the description of the play from their site:

Writer/Director Jesse Heffring worked with over fifty students, listening to their opinions, ideas and perspective on life, to create this eye opening play, "Rachel at Risk." It is a through-the-looking-glass journey into the world of youth, living with disability, in a world that does not understand them.

It was heavier than I expected and it's based on a true story. The play follows the lives of Rachel, who has an intellectual disability, and her Asperger's brother, Michael, who has cancer. They are stuck in the foster system and bounce around from home to home because of Rachel's anger management issues. She is very protective of her brother and the two of them stick together. The foster mother they get is not prepared to deal with a cancer-striken boy and wants to turn away this emergency placement. The reality of the shortage of foster homes available hits home and it demonstrates the incredible pressure social workers are under.

Together, the siblings end up at a special needs school and we get to learn about all the different classmates and their perspective on living with disability. They talk about whether they will earn high school diplomas, if they will work or collect welfare, and what's the point of even trying when society doesn't accept them. They even touched on the difficulties of living with parents who don't accept them as they are.

Rachel gets upset and runs away from the foster home. She ends up in a dangerous drug house and is exposed to a man who tries to use her naivity to turn her into a prostitute.

I don't want to give all the details of the story away, but this is just an example of the very heavy and mature subject matter these teens are dealing with.

Suffice to say, there wasn't a dry eye in the house after this performance. The kids did an amazing job! I'm also really impressed with the school.

As a bit of background, Summit School serves children/teens with intellectual, learning and behavioral disabilities from ages 4-21. They also have "satellite" schools, which means little mini-schools operate inside other mainstream schools. I went to a high school that had a Summit class within it, so these students were partially integrated. I was actually on an integration committee to help create a "buddy" system. I would say for the most part, that failed as a whole, but I know I at least enjoyed spending time with them. I went skiing with them and I remember one boy remarking, "you actually speak to me like I'm normal." Sad, but true.

If anything, seeing this play makes me want to send my son there for high school, because I see how much they really do believe in the kids reaching their full potential.

I'm not sure how long it's playing for, but if you're in Montreal, I recommend checking it out.