The Au-Some Conference

ASD Canada Conference Logo 2016 Au-Some Conference

Join Autism Canada and Every1 Games at the Au-Some Conference in Hamilton, ON, this Au-gust 20th, 2016.

Why?

Because I'm speaking. But also because it will be at least as fun as the last Every1Games Unconference I attended last year.

Registration is open right now and limited to 100 attendees. On the registration page, you can also make a donation towards the conference, which will help an Autistic person attend, or help pay for my trip out there.

Let me know if you'll be there! If you can't make it, all talks will be recorded and put on the website after, so you don't have to worry about missing out on everything. 

Coping With the Reality of Asperger: Sandra Petojevic at TEDxGöteborg

Sandra Petojevic is an amazing story teller. She talks about how the way she sees the world, through the Asperger's lens, colours the characters of her fantasy trilogy novels. She uses allegory to bring you into this creative fantasy world - learning about both it and living on the spectrum at the same time.

It's both fantastic and fascinating. I hope you enjoy every minute.

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 vs Asperger's

If you hang around here a lot, you'll know I refer to myself as Autistic (with a capital A) and not Asperger's. There are a couple of reason's for this:

One, despite how I may appear and how much I can relate to Aspies, my diagnosis is autistic.

Two, the Asperger's diagnosis got swallowed up under ASD and I think we all might as well get used to just saying ASD.

Finally, there are some Aspie's with superiority complexes and I'm not interested in being in their club.

Yes, I do frequent a lot of Asperger's groups/communities, mostly because I "get" them and I think they "get" me. In fact, I've never really felt quite as home anywhere else and they are the closest to it. But I'm technically not an Aspie.

I jokingly refer to myself as Aspie at times for simplification, but that's about it.



If you have a diagnosis of Asperger's, are you hanging onto the title?

I'm Not Sorry About Autism

You don't usually hear conversations that go like this:

"My son's eyes are blue."

      "You must be strong. It's because God knows you can handle it."

"I have black hair."

     "Oh, I'm so sorry to hear that. What's it like for you?"

"My husband is white."

     "That must be so hard to deal with."

"My best friend has an IQ of 114."

      "You're such a saint to be his friend."

With the exception of hair dye, the sort of attributes I mention above can't really be changed. They are part of the person - the way they were born. So is autism. It's part of me, part of my son. I'm not sorry about it. It's just a small part of what makes us who we are.

So imagine my surprise when my husband tells the plumber working on our house that our son is Autistic and he tells my husband he's, "so sorry."
(Also lucky I wasn't there or he would have gotten an ear full)

I don't know any other life without autism and I don't know my son without autism either. We would not be the same people. I'm not sorry about who I am. It's different, but there's no reason to feel sorry for us.

You may be interested in I Make No Excuses

Surviving The Holiday Office Party ASD-Style

I recently wrote about coming out Autistic at work and an update on that, but unlike a regular work day, an office party can throw a whole lot of unexpected at you.

I'd say this party was the best one for me yet. Because of my recent diagnosis and better understanding of myself, I was better prepared. Essentially, what official diagnosis did for me was give me permission to take better care of myself. It's not that I didn't know what to do before, it's that I didn't listen to myself and thought I should just keep forcing myself to do and be things I am not so great at. I thought I was being weak or stupid. I thought if I just kept pushing, eventually I would change and everything would be "normal." Fighting with myself got me no where. I finally stopped fighting.

Did I still make social blunders? Yes! Do I care any more? No. (Unless I hurt someone, then I would apologize. But if I just look silly and socially inept, I no longer care)

So here's how I prepared for the party:

As soon as the party date, place and time were announced, I added it to my Google Calender. Then I printed out the directions on how to get there from Google Maps. I already knew what dress I would wear (I bought it in the fall) and which shoes. This was about 3 weeks in advance.

My department also decided to hold a gift exchange on the same day as the party, so I had to plan to go out and buy a gift. I went out and got it on the weekend about 2 weeks before.

The week of the party, I made sure to get enough sleep and eat well leading up to the day, especially the night before. Not enough sleep before the party would have lowered my coping skills.
Eating well, for me, also means not doing anything else new or different. No eating out (because there can be surprises!) or doing anything particularly novel. Too many different experiences in one week lower coping skills.

The night of the party, I go home after work first, even though it would be easy to go straight to the venue. Going home first allows me to recalibrate. I can see my hubby and kid, eat familiar foods, and get ready in a familiar environment. Stress of the unknown would be building by now. I eat before parties because I never know if there will be something I can eat where I'm going or if it would be available on time. Being hungry lowers coping mechanisms as well.

I also do not usually drive people to the venue. Even though I think it would be fun to get ready with someone, it would be too much stress to either wait for someone else who is running late or have them waiting for me. I've done it before and I don't like the feeling.
This aspect can be difficult socially because I don't drink alcohol and I would be the perfect designated driver. However, I really can't stand being around drunk people and wouldn't want them in my car. So while it would make complete economic, social (maybe even moral) and environmental sense for me to drive other people, for the sake of my own sanity, I really can't. This is just one of my limits.

I don't usually wear make up, but I do for special occasions like parties, and it takes me awhile to apply make up and also get used to the feeling of it on my face. Some of my stims involve touching my face and not being able to do it takes away another coping mechanism.

Getting out the door can be challenging. Now back in the comfort of home, it's hard to leave it again, especially knowing the night will be loud and filled with the unknown.

Navigating to a new place can add to the stress, but I've gotten a lot better at this over time.

Whew, I'm tired already just writing about it!

So I've made it to the venue. Now it's time to work on the social part. As a woman in an IT company, I expect to get stared at, especially in a dress. It's not bad, I do not mind attention, but it's more than I'm used to. Here we follow the French tradition of the two cheek kiss. I can't understand why at parties, we are supposed to greet our co-workers, who we've just been with a mere few hours ago, with a kiss or handshake just because we're at a party. But that's what we do and I can be awkward about it. Some people shake hands at the same time. Some people hug. I never really know. It's amazing we all don't just bash heads.

My work always offers a buffet, which is good and bad. Bad because I dislike food that has been touched by a lot of people. Good because I can take as much "safe" food as I like. There was a whole seafood section this year, which I can't eat at since I'm allergic to shellfish. There was sushi amongst all that, which I like but wouldn't go near in case of cross-contamination. So that option was gone.
I usually stick to vegetarian options when eating out, which always leads to questions about what I'm eating or not eating. Invariably, I am offered wine or some alcohol and I have to keep saying, "no." I'm just glad I'm not an alcoholic because it's annoying to always say no and the questions that go along with it. If we're going to use the spoon theory to apply to this, I'd say these questions make me lose a few spoons.

I'm not a fan of small talk, but I also don't like talking about work when not at work. I understand this makes it difficult to be social. At the same time, I have absolutely no problem sitting in silence and just looking at my surroundings, but other people, evidently, have an issue with this and will go to great lengths to avoid it.

This year there was a show on stage after eating that involved four topless men banging on drums. It was quite loud. Too loud for me at least. I had to cover my ears. I did that for a bit but then got tired of covering my ears. Despite me liking drums and topless men who weren't hard on the eyes, I could not enjoy the show, so I walked away from the stage. Being the only person walking away in the middle of a show with her fingers in her ears attracts attention, unfortunately - I got some stares, but I felt better removing myself from the situation, rather than standing there and pretending to enjoy something I wasn't, thus losing more spoons.

Then it was dance time. I like dancing and know how to dance, but I refuse to dance to music I don't like. This makes me a bad dance partner because depending on the DJ, I will walk on and off the dance floor. This is not a problem for men usually. It's a problem when dancing in those little circles of women, who need people with them in order to dance. As I've gotten older, I no longer care if someone is dancing with me or not. In my case, at my company which is mostly filled with IT guys, one will usually appear quickly and start dancing with or nearby.

As the night wears on, people start to become more and more intoxicated and I become more and more annoyed by their presence. They are no longer able to hold a conversation of any value. They invade personal space even more than normal. They act obnoxious, and being an emetophobe, I also fear them being sick. I try to make my exit before people get too annoying.

I also have to make calculations based on how tired I am and if I can drive myself home safely. I also time leaving based on what demands I will have the next day or over the weekend. I calculate how much sleep I can get based on what time my son usually gets up. He's pretty predictable, but you never know. Kids seem to have a tendency to get up earlier after you've gone to bed really late.

I left just after 2am, so I got 4 hours sleep last night. I was thinking of napping today while the Little Man was, but decided to write this draft instead. I would never have dreamed of such a thing before (would have slept in until I could catch up on sleep) but having a kid has trained me to know I can manage on less sleep, at least in the short term. I will go to bed earlier tonight and tomorrow to compensate.

I hope you can gain an appreciation for the amount of planning that goes into what most people take to be a simple and fun evening out with friends.

EDIT: There's an update to this post here. 

What Do You See?

Speaking of appearances, this is the video we made in protest of Autism $peaks most recent "call to action."

What Is It About Trains Anyway?

Little Man playing with his new train set

Three people gifted the Little Man train sets for his birthday. Of course! Why not? They all know him so well. He loves trains and we have no problem with this.

Maybe he will be a train engineer, or maybe a train mechanic. Who knows? But we know this man loves his trains!

I used to watch Thomas and Friends as a kid also. I grew up with the ones narrated by Ringo Starr. I liked the stories, but I don't think I liked them for quite the same reasons. I like all the detail in the models and scenery. Looking at all those tiny replicated villages, with tiny cars and tiny people going about their day. I love the amount of detail enthusiasts put into that stuff.

It's also no surprise that many, many Autistic people like trains, so I finally asked my son what exactly is it about them that is so fascinating?

The Little Man told me they are strong. Yes, they are!

Then he also told me they are fast, and he made his visual stim motion where he moves his hands or a train in front of his eyes, closely and quickly. Ah ha! That visual of fast trains speeding by in front of you, which makes me dizzy trying to keep up, that's what he loves.

Then I remembered my childhood and how I used to hyperfocus on the smallest of things. I used to watch ants (my special interest was entomology) and observe closely. I could see their little antennae and eyes. And I realize now that detail is my visual stim. I've always had an eye for detail - still do - which is probably why I love editing. Then I realized how lucky I am to be in a job that stimulates exactly what I need and like. How's that for an interesting train of thought?

#WondrousWednesdays - Life With Asperger's

Gavin

This Wondrous Wednesday I'm introducing Gavin:

I'm 44, I live in Sydney, Australia and have been married to my childhood sweetheart, a neurotypical woman, for 16 years. We have two boys aged 13 and 10.  I lost most of my hearing at about age two, to an out of control ear infection and I'd always assumed that my differences were due to my hearing loss.  The one thing that didn't make sense was that I had trouble fitting in even with other people with hearing losses. 

It wasn't until my eldest was diagnosed with Asperger's syndrome eight years ago that I realized that there was another reason.  

As it turns out,I have Asperger's Syndrome. My eldest has Asperger's Syndrome, Non-Verbal Learning Difficulty and Attention Deficit Hyperactive Disorder - Inattentive type. My youngest has High Functioning Autism. I started my blog, Life with Aspergers (life-with-aspergers.blogspot.com) because after my diagnosis, I started rediscovering myself and I began to realize that at the time, many of my insights were rare. I wanted to give the world a chance to understand individuals with Asperger's syndrome and thereby give my kids and others a chance to share the same opportunities as neurotypical people.

My original ambition was to be a writer but for various reasons I ended up doing a degree in Information Technology instead. I now work in the finance sector doing computer work but continue to "scratch my writing itch" by blogging. In my spare time, I am also a cub scout leader.

2) What is your biggest challenge with your (or your family member’s) disability?

The challenges are constantly changing but I guess my biggest challenge is with my eldest son's ability to stay on task and retain information. I have a very good memory for facts and events and I don't take notes in meetings because I can usually recall the entire conversation.  My eldest son is the complete opposite. If he receives a two stage task, he is unlikely to even complete the first stage. It's very hard to keep reminding myself that his abilities are different.

In his early years, it was hard to understand that this was due to difficulties he had with processing instructions rather than "defiance".

3) What is the greatest gift from your (or your family member’s) disability?

Our family displays some fairly original thinking. My eldest was asked, in kindergarten, to hold up a mirror and draw what he saw.  His classmates all drew their faces, which was the point of the exercise. He did not. He walked around the room and drew what he saw, backward, blurred and interconnected.  It's an amazing piece of art.  My youngest is not artistic but displays an aptitude for computers which I have never seen in another child his age.  His creativity seems to manifest in intriguing ways to get around computer system defenses and limitations. At age seven, he was hacking wi-fi networks, breaking windows passwords and he even managed to arrange (and pay for) an overseas wedding for himself, including cars and accommodation. These days we know better than to try to limit him using technological means and we have been trying to teach him how to be a good online citizen.

4) What’s one thing you want people to know about your (or your family member’s) disability that many don’t seem to understand?

I guess the most important thing for others to know is that we prefer being the way we are. We don't "suffer" from Autism (which Asperger's is a form of). If we suffer from anything it's external to us. We suffer from the judgement and limitations imposed by others and by society.  It hurts deeply every time we hear of research being conducted to remove or "cure" our condition.  

5) What has been the best part of maintaining a blog?

The best part of blogging has always been the comments. My readers give such supportive feedback and ask such interesting questions.  Their questions will often cause me to reconsider and often completely change my point of view. I think that this is important for my own self growth.

6) What is a typical day like in your life?

My typicial Mondays start at 5.30am. I spend the next ninety minutes getting ready for work and getting my kids ready for school. It's a daunting task as they'll wander off to their ipads or TV (or anything else) whenever the opportunity presents itself.  I take a bus to work and try to sneak into my office without human contact.  I do my best work in the mornings before constant interruptions, meetings, and random computer issues pull me off important projects to deal with things "in the moment".  On Mondays I leave early at 4.30 and hurry home. 

As soon as I arrive home, I need to be changed and off to Joey Scouts to help my wife who is a leader there. Cub Scouts starts immediately after Joeys and I usually don't get home until 9pm, when I have dinner and see my boys into bed.  On the other days of the week, I work an extra ninety minutes at work and usually don't get home before seven.  The hardest thing about all of this is that I really don't get to see enough of my kids.

7) What’s your favorite pastime?

I'm a big movie buff but sometimes I think that I enjoy "collecting" movies (and indexing them) more than I do watching them.  

8) What’s your favorite food/drink? 

Without a doubt, it is ice cream. 

9) What’s a question I should have asked about you?

Anything about Asperger's syndrome really. My blog is full of information on how it feels to be inside a meltdown, what is going through child's mind when they line up toys and all kinds of other stuff.  It's funny but I can remember so many of my childhood thoughts and moments that re-evaluating them now that I know about Asperger's syndrome has provided me with some unexpected and interesting insights.

10) Anything else you’d like to share - a tip, words of wisdom, a recipe, a poem?

Although I do write poetry from time to time, it's usually for comedy purposes.  I think the best I can do here is a tip.

The best tip I can probably provide is simply a reminder that Asperger's syndrome and Autism are words used to describe the occurrence of a subset of a collection of behaviors in an individual. No two people are ever the same and we're still learning about new traits and differences. It's not an exact science.  If your child receives a label, just remember that it is only a label. It doesn't change your child. Your child should always be treated as an individual and never simply as just a label.

11) Would you like to recommend other bloggers my readers would be interested in reading?

My favourites are Rachel Cohen-Rottenberg (from http://www.disabilityandrepresentation.com/) who is always tackling the biggest and most painful issues in the community. Rachel touches issues which have no clear black and white solutions and brings out the best and the worst in her readers. Marita from Stuff with Thing (http://www.stuffwiththing.com/), an Australia blogger whose life is full of color and comedy. She shows us  exactly how much fun a mother with children on the spectrum should be having and Chloe Rothschild, one of my fellow writers at Special-ism (http://special-ism.com/) who represents the cutting edge of inspirational blogging youth with autism.

World Autism Awareness Day

NOTE:
This post was originally written April 2013, before I knew about how awful Autism $peaks is.

I have chosen to leave it up rather than deleting it, because I want to show how far my own understanding has come and how we can change. 

When you know better, you do better. 



*******

Today is World Autism Awareness Day!

The point is to raise awareness and understanding of autism worldwide. People wear blue clothing or change their house light bulbs blue. Cities have participated in the past with Toronto's CN Tower and New York's Empire State Building turning blue for the night.

More info:
WAAD UN Site

One family's way to Light It Up Blue.


Also, Toys R Us Canada will donate $1 to Autism Speaks for every "like" on their Facebook page until April 30th.


Are you doing anything special? Is your city? Let me know!
Either way, thank you for reading our blog and following this journey with us. That's the best type of awareness anyone can gain and we appreciate it.

More Sentences!

It is wonderful that we've been moving from just words, to more full sentences. The things that come out of his mouth are surprising and funny. We know he is listening to us at all times! Oh oh!

Now when the Little Man trips or falls, he says, "I meant to do that!"

We went to visit and were knocking on his granny's door to get in and he said, "Hello? Can you hear me?"

It's so cute because these are not necessarily phrases we actively taught him, just things he has picked up on his own.

We have a lot of people visiting our apartment since we're moving, and he asked them, "what doing in my house?" I wasn't around at the time and Hubby didn't really explain it to him, but I told him he needs to explain to him why we're allowing strangers to walk in our house. I'm sure it doesn't make any sense to him.

In other good news, we got an appointment with the special autism school for an evaluation. I really hope he gets accepted for September. I think he'll really enjoy school.

Autism Makes Me Better

I just read this great post in all the ways this particular mama feels raising her autistic children has made her a better person.

No, it's not all sunshine and roses, but it's not all blood and thorns either. I can appreciate her positive perspective and I often feel the same way. I have learned more patience, compassion and understanding from my son than from any other person. And like her kids, my son is just hilarious to be around. His smile can light up a room. It's easy to keep smiling with him around and we are all better off for it.

Feverish Conversation

Over the last two months, the Little Man has been suffering from what seems to be one long virus that won't leave us.

We've had two episodes of fever - the first one was long-lasting but low. This second one is quite high and I'm hoping will only last a day or two. We've taken him to the doctor, but they just say it's the virus that's going around and we have to wait it out. (In between this time, we all got the flu shot, but I don't think it even had a chance to take effect with all this going on!)

Anyway, the funny side effect of the very high fever is the Little Man is talking up a storm. He just won't stop talking. It almost seems like he's drunk or manic. At least he's a happy drunk!

He comments on everything he sees. He says "hi" and "bye" when entering and leaving rooms. It just doesn't stop!

Rather than be annoyed though, I find it funny and quite like it. It gives us a chance to hear just how much he knows and to hear his sense of humour.

At the same time, I wish he didn't feel so crappy. It's no fun being sick, but he's such a trooper.

What weird things do your kids do when they have a fever?

Picky Eaters: How Many Meals Do You Make Each Night?

No, our dinner table doesn't look like this every night!

We've seen a nutritionist, a psychologist and an occupational therapist solely to help with my son's eating issues and while they've helped to some extent, things are still not perfect.

 The Little Man has made great strides and is more adventurous, but when I asked him what his favourite foods were he said, "fries and cheese." Ok, so poutine basically. He's really got French Canadian blood in his veins!



 So basically, because of our schedules, Hubby cooks dinner most nights. He tries unsuccessfully to feed the child whatever he makes for us first and then ends up making something else on the child will eat - like a sandwich or "cheesey noodles," or a hardboiled egg.

I know this must get tiring, making two meals. The question of "what will the Little Man eat tonight?" is a constant. But, when he eats, all is well, so making two meals isn't really that big a deal. Or is it?

If you ask the larger society out there with neurotypical children, I've heard people say they would never make two meals and the child goes to bed hungry. I find it LESS stressful if we just feed him what he wants. Then we are all happy. 

 I just wonder if people think we're crazy and maybe think we look like this?

 Or this?

I just prefer that mealtimes not be a battle and let him have his way in this case. I think there will be plenty of time when he gets older to be more adventurous and I'd rather not make meals into fights. Don't get me wrong - he doesn't have complete control - it's not like we let him eat chocolate pudding and chips for dinner. It's within reason. There are limits, but the limits still give him enough of a feeling of control that it doesn't turn into a struggle - as many things often can with a three-year-old! 

I guess what I'm saying is we set healthy limits and compromise so that we can all be happy.

So what are mealtimes like for you? Do you make more than one meal for your kids?

What Would You Do?

There are still some good people in the world.

This is a great video from the show What Would You Do? which puts actors in with regular unsuspecting people to see how they react to certain controversial scenarios.

This episode puts a family with an autistic boy in a restaurant, just trying to eat a meal. I was surprised and happy to see how people reacted. It made me cry - just a warning if you're at work/in public. Not that crying is wrong or bad! :)

The First I Love You

Every night before bed, Hubby rocks the Little Man and I come in and get my good night kiss. I say "Good Night, Little Man" and sometimes, but not always, he says, "Good Night, Mama!"

Then I usually say, "I love you!" and he usually just looks at me or ignores me or whatever and it's no big deal. Last night for the first time ever though, he responded with, "I love you, mama."

This was wonderful and surprising, but probably not in the way you'd expect from a mama. It was significant because it means he understands the complex syntax and the social use of it. He doesn't have to feel love when he says the words, we already have our nose beep system for that, it's the comprehension and production of language that is interesting.

You see, he didn't just parrot back, "I love you Little Man" or just "I love you" - it's more complex to understand that the subject of the sentence changes. It means his little brain is learning tons about language. That's very cool!

I Love You Mama Greeting Card by oodlesdoodles

Geez, Apraxia AND ASD?

We finally finished the pre-school speech therapy evaluation today. Of course, she still has to go through her notes and write the report, but it looks like the Little Man has Childhood Apraxia of Speech (I just say apraxia, cos I'm lazy like that. Or maybe apraxic myself. Ha ha.) Now, he's too young for her to pin that diagnosis on him, so all it will say is "motor planning speech disorder" or something like that, with recommendations. She recommends DAILY speech therapy.

All I can think about right now is, how do we accomplish that without either of us quitting our jobs? The only thing I can come up with on my own is to hire a driver to take him from daycare, to his appointments and back. Anyone else have any ideas? Because I'm at a loss.

Not that it would hurt, but we can't just go with any speech therapist, we need to work with one who specializes in motor speech disorders. I think I'll wait for the report before I start letting my head explode though.

And I realize I should explain this in lay terms to those who never studied linguistics: apraxia means his muscles work in his mouth. It means his brain has words in it, but when he tries to use his mouth to produce a word, the signals in his brain become all uncoordinated and his muscles don't move in the correct way to make a correct utterance. So basically, he is unable to say everything he wants to say that is in his head. Learning to write/type will probably help him express himself.

The other overwhelming thing to me is to think, gee, he's both ASD AND apraxic. Like, holy hell, there is no God! Seriously, who would do that to someone? Especially a kid! Argh, I just need a few moments of "why him? Why me? Poor him! Poor me!" and then I'll have to let it go or it will depress me. There are many days I believe he is more resilient and determined than I am.

But at the same time, I can pat myself on the back for my instincts and my fight. I've said it many times here I believed he had either apraxia or dysarthria (see, my degree was not wasted!) and I've managed to keep searching for answers. A mama knows her child.

Y'all Talk Too Slow

I have written many times about accepting my son how he is (here, here and here), but I'll admit, one thing I do not like about Asperger's (and consequently, my husband) is how they talk so slowly and take FOR FREAKING EVER to get to the point of their story. Sometimes it makes me want to die. No really, I have NO PATIENCE. I've been working on it, but I'm a work in progress.

At the very least, I have patience for my son - there is a delay to his responses and he is slow to express himself most days. I have not lost it with him yet, but I fear I will in the future. At some point, he will cease to be cute, small and nice-smelling, with a teeny voice, and turn into a pimply, stinky, gangly teenager, most likely much larger than me. Probably a lot like his father. Will I lose it with him then?

It's a flaw I have in myself. It's a lack of empathy and respect. I know their brains (and mine, as far as I'm concerned) work differently, but I can't always muster those basic things in order to tolerate what I lack patience for. What they have to say is valid, important, insightful, useful. Why can't I just patiently wait for it?

Here are two examples:
http://www.youtube.com/watch?v=VLOJQmsRpag&feature=related

http://www.youtube.com/watch?v=YnoIXREzYmM&feature=related

 This is very much how the Little Man speaks right now:

DisAbility - There Must Be An App For That

The Little Man got approved for the Disability Tax Credit, much to both my surprise and joy. He qualifies until 2027. This also means we can open a Registered Disability Savings Plan. We're also allowed to claim as of 2010, so we'd have to resubmit our taxes.

Still haven't heard from QC (not surprised) to see if we are entitled to the Disability Supplement. It would be weird if Canada approved and QC did not, but weirder things have been known to happen. Anyway, it should help because therapy is stupid expensive. It's just weird that the CLSC didn't deem him disabled enough for free services, but the government does. Everyone is reading the SAME report! But whatever. I can't complain. Just have to keep truckin'.

Anyway, I got a 3rd call from an "autism company" - for lack of a better term - these people who like trying to make money off of worried/stressed out/desperate parents. They create these special "programs" off the top of their heads and then try to tell you they're the best. My fault for the initial inquiry I made, but now she keeps calling me. If I wanted her services, I would have called back, no? She was actually still in the running until this last call where she clarified that a speech therapist does NOT in fact work with the child, an "interventionist" does. This interventionist of hers has a degree in Social Science. She does not have a degree in Speech Language Pathology. I was told this was an advantage because it "saves you money!" No, it's not. I explained that I'm happy to save money by buying cheap socks, but speech therapy is not something I want to skimp on. Really lady? And what the fuck does a social science major know about autism?
Next!

I'm like 99% sure he's got apraxia. I got an iPad and downloaded like, 3 million free "autism apps" and he's having fun with them. Visual focus is not an issue for him, but active listening can be. Although, I should compare him with neurotypical 3 year olds for that; he's probably not out of the ordinary. He understands everything. It really only seems to be a production issue. I'm gonna look and see if there's an app for that! LOL

He's a week away from his 3rd birthday, which blows my mind. Time flies! It feels like just yesterday his little bald head lay next to me in bed in a puddle of my milk.
He's so lovely. He's like, magical or something. I can't explain it. He just speaks to my soul.