July 16, 2014

Autism and Faceblindness

fuzzy blurred out faceblindness head on OneQuarterMama.ca
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.

July 15, 2014

An Ode To An Autism Mother

This is an amazing talk about meeting your child where they are – that means encouraging and working on the talents and skills they have, following their lead and developmental timeline, and presuming competence at all times. 

This also means not restricting or taking away their “obsessions” or “fixations.” This means not comparing them to others. This means caring less about how they “function” and more about what makes them excel. This goes for all children, not just autistic or special needs.

When you support them and their interests and accept them for who they are, not only will they flourish personally, but they may even devote a wonderful TedTalk to you one day. 

July 09, 2014

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. 

June 30, 2014

How To Deal With Repetitive Questions

how to deal with repetitive questions by One Quarter Mama.ca

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. 

June 27, 2014

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.

June 25, 2014

What Do You Do When Your Child Has a Meltdown?

The Little Man had a meltdown this weekend. He hadn't had one since October, so when they happen, I am still caught a little off-guard. Even with my own experience with meltdowns, I am still a novice at dealing with other people melting down.

We work hard at preventing meltdowns in the first place, but I think the transition from school ending to going back to daycare for the summer has been too much for him. He's struggling with finding predictability in his day and his daycare worker is not the best with this either, unfortunately. She told me, "he's been asking, 'what's happening now? I don't know what's happening!'" but she didn't know what to say to him. I had to tell her she simply needs to tell him what's going on - "now it's snack time. Then we'll play before lunch. Then we wash our hands, then we have lunch...." It's so easy and obvious to me, I had forgotten that not everyone parents like I do. You don't have to a special needs parent to know to just answer a question when a child asks it! (That's my little rant of the day)

Anyway, I thought everything was fine, but it wasn't. I proposed going out for a short ride around the block on his tricycle. The work involved in getting a bike to move forward is a lot for the little guy. A mixture of dyspraxia and autism conspires against him. He has made great improvements, but still has a hard time. He started to get frustrated at it and I should have put a stop to it then, but I thought he would be ok. So we got to the corner of the street where I thought we should turn around and head back when he flipped out. He wanted to bike to his great-aunt's house (who loves a good 25km away!) since we had visited her recently. He then would not budge from the bike. I suggested walking back home and he didn't want to do that either. After trying to calm him down, he was just screaming outside on the corner of the street, so I took him off the bike and walked him back home, him screaming the whole way. We got home and he didn't want to go inside. I thought he would when we got to the door, but instead he bolted. He only bolts when angry, so obviously, he was pretty angry now. The problem is we live on a busy street and I am always scared he will just run into traffic. If I move towards him to try to coax him inside, he moves further away. So by now we are quite a distance apart, with him on the lawn close to the street and this terrifies me. So it becomes a game of cat and mouse, with me trying to catch him as he runs around screaming. People walk by, even a cop car drives by, but no one pays attention. (Looking back now, maybe I should have flagged down the cop car? The excitement of seeing a cop might have snapped him out of it for a moment).

I eventually catch him and I bring him up to the porch (which is enclosed) but I leave the door open and the house door closed (so that he doesn't feel like I am forcing him in) and I just hold him like a baby while he cries and lets it all out. I coo, and shush and pat his back like he's a baby in my arms and I bounce until he is soothed. That's my technique right now, but I won't be able to do that as he gets bigger. I'm hoping meltdowns won't be so bad as he gets older, but I'm probably crazy to think that. I tell him it's ok that he's frustrated and angry. When he's done crying, I let him play outside a bit to calm down. He runs his fingers through the sand in the driveway and starts to relax.

(For all those wondering where Dad was all this time, he went out to get food. I kind of hoped he would get back before we had to go inside, but that didn't happen. I'm just unlucky since I was also alone for the last meltdown!)

Eventually we go back inside and I get out his iPad so he can just chill out, but I see he is still teary, so I sit down with him to talk about what happened. I said, "do you want to talk about your feelings? You feel angry and frustrated, right?" He nods yes. "What other feelings do you have?"
"Silly!" he says.
"Silly? Who told you that? Did someone say you were being silly?" (Now I'm thinking someone put that idea in his head at school when he gets angry)
"Me silly!" and he points to himself.
"You think you're being silly? No. Not at all, love! You're not being silly. You're allowed to be angry. But what makes mama scared is when you run and I'm scared you'll go into the street. Then you could get a big owie and mama doesn't want anything bad to happen to you. Remember mama told you, you are my most precious treasure, so I don't want you to get hurt. But you're not silly, ok?"
He nods.

It's one thing to have a meltdown, but I don't want him to think he's a bad person for it!

So that's my long story. What do you to do to deal with your child's meltdowns? Any special techniques you use to de-escalate? Do you think the cops could have helped? 

June 23, 2014

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.