April 24, 2014

Another Autistic Life Taken

Press has been relatively quiet on this - I only found out about the story of Robert Robinson today - almost a month after his murder. The unfortunate thing is that, once again, we see the family and the press glossing right over the murder and using this unfortunate incident as a way of asking for more services.

Let's put the focus on the innocent party here. Robert was 16 and loved walking outdoors. I unfortunately don't know much else about him since the article did not make his death the focus. The focus fell on the "distraught mom."

So sad.

Why does this keep happening and why so much sympathy for murderers?

April 23, 2014

I Am Not A Tireless Advocate

There are so many amazing Autistic self-advocates out there and to some extent, I do feel like one. At the same time, I don't feel like I have the same amount of energy and time to participate as much as I would like, so I have to leave some effort up to others.

Also, I don't feel like I necessarily fit in with some of the advocacy crowd. I have learned very quickly that trying to play Devil's Advocate or see a situation from all sides, gets me into trouble with some. There's a lot of all-or-nothing-black-and-white thinking - which is a really autistic trait, but also not always the best when it comes to making well-rounded arguments. "No, because I said so" doesn't quite cut it in the outside world.

I am passionate and political. I am very clear on my stance on vaccinations (please get them!), circumcision (please don't!), use of the R-word (please don't!), and basically always fighting for equality when it comes to race, sex, sexual orientation, gender, disabilities/abilities, and neurodiversity. I could probably add more, but you get my drift. That's a lot of causes to be involved in.

I do my best to engage in meaningful dialogue and call people out when I can, but I am not a tireless advocate. There are also still times where I do not feel like I have enough privilege to speak up. There are times where I don't have the words to speak up, and there are still other times where I am simply too emotional to speak up effectively. I'm not even going to detail those situations because they are honestly too disturbing for me to want to relive and not useful here anyway.

I suppose I can be hard on myself for not doing more, but it's also ok to ask for help and let some others who are stronger carry the burden sometimes. I have hope that the world won't always be this way - by that I don't mean we will never need advocates (though that would be lovely), but that we can get to a place where I feel like I have more power than I do now. That is my simple wish. 

April 21, 2014

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. 

April 18, 2014

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!

decorated easter eggs with butterflies by OneQuarterMama.ca

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. 

April 14, 2014

Brushing Protocol

wilbarger brushing protocol therapressure brush on OneQuarterMama.ca
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 :)

April 11, 2014

Don't Put Words In My Mouth

One of the first questions I answered online for a parent of an autistic child was about prompting. Prompting, when it comes to eliciting speech, comes from a good place. It's the idea that you can help a person say the words they are looking for. People want to think they are helping and I understand that, but in the case of my experience with autism (and my son's apraxia), it really doesn't. In fact, it makes things worse.

don't put words in my mouth onequartermama.ca
Don't put words in my mouth

There are times when I lose my words. Yes, I am normally very articulate. Yes, I write prolifically. However, those things are not always dependable. There are times where, for the life of me, I cannot get words out. Everything comes out jumbled. Sometimes, the correct language does not come out. I want to speak English and German comes out. Or French. Or Irish. Or a mix of all those. It's incredibly frustrating.

Sometimes I am reduced to just pointing at things while my husband guesses what I need. At least I have an understanding husband, but when out in public, especially while interacting with people I don't know, I look like I don't understand or am stupid.

People try to "help" by repeating the same questions, raising their volume or guessing what I want to say. When they are not being helpful, they are dismissive and sometimes outright rude and insulting. It is hard to be taken seriously when no one will listen. Most people are rushed for time, so a lot of people don't have any patience for someone who cannot express themselves quickly and clearly.

When I am struggling to find a word and someone starts throwing out random words, thinking they can guess what I want to say, it's incredibly annoying. It's very hard to think with someone asking more questions. It's like trying to count while someone yells random numbers at you.

It makes me feel like they are impatient, and this is someone I do not want to interact with. It makes me feel like they are more interested in doing something else, rather than listening to my needs. It makes me feel small. It makes me feel dismissed. It makes me feel unsafe around this person.

What you can do to genuinely help is give me a few seconds to think. Give me silence to allow my brain to process and my thoughts to make sense. When you give me space, I feel safe and free from pressure to perform RIGHT NOW and lets me relax enough to think straight.

After all, conversation is not a race to see who can speak the fastest. It's an exchange of ideas, and if you create a space where people have the time they need to express themselves, you may hear some valuable gems. Sometimes good things come to those who wait. 

April 04, 2014

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.