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.

April 02, 2014

An Open Letter To My Son's School

For privacy reasons, I am not publishing the name of my son's school. However, this is a copy of the letter I sent to his school in response to their "Light It Up Blue" celebration.

The "Light It Up Blue" campaign was started by Autism Speaks - an organization that I unfortunately cannot support as an Autistic adult and self-advocate, as well as mother to an Autistic child. Autism Speaks says they are spreading "awareness" but uses fear-mongering and likens autism to a deadly illness that is "stealing children" and requiring a cure. They consider autism to be a disease and a "public health concern." (Ref: http://www.autismspeaks.ca/events/light-it-up-blue-and-world-autism-awareness-day/)

They do not listen to the voices of autistic people and do not have one autistic representative on their board or openly in their organization. 

As such, I cannot support their work and I cannot sit back quietly while they continue their reign of fear.

I will continue to fight for acceptance - acceptance for all people, regardless of ability, sex, creed or colour. I will continue to fight for acceptance of neurodiversity and the understanding that different is not wrong or less. In fact, if your autism celebrations are done with the intent to promote pride and acceptance of autism, I can only support that. But if they are based on the need for a "cure" for the "devastating curse of autism," as promoted by Autism Speaks, then I am distinctly against it.

I am writing because I want you to be aware of where this campaign stems from and how it can hurt autistic people. After all, we are not disappearing. Autistic children grow into autistic adults.

Because my son is too young to be involved in such politics, I will send him to school in blue so he can look like his friends and enjoy his day, but understand this puts me in an awkward position and is not an ideal situation.

SCHOOL has done an amazing job supporting my son in the short time he has attended. Please do not let the loudest voices, and in this case, the one with the most money, sway you down the wrong path. There are many great associations where autistics are coming together to speak, and hopefully one day we will be truly heard.

Thank you for your consideration.

March 28, 2014

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. 

March 26, 2014

#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.