post

The Duck Pie Dance

DSC_0284

The nightly Duck Pie Dance starts at about 7:30 p.m., right after everyone has finished eating dinner.

“George, put on your pyjamas,” I say to my firstborn son, who at eleven, currently has the whole puberty-and-autism combination going on.

He stops whatever he is doing to look at me, and then he gets up and locates his pyjamas. He returns to the living room, and then standing directly in front of me, he puts them on. Without first removing his daytime clothes. He stands there looking bulky and rumpled, with an expectant look on his face as he waits for me to follow the script.

“George,” I say obligingly, “Take off your clothes, then put on your pyjamas.”

He takes off the pyjamas but keeps his clothes on. With a look of devilment in his eyes, he holds the pyjamas and slowly edges toward the door that separates the living room from my husband’s office. At a snail’s pace, he shuffles into the office, pulling the door as he goes. Right before the door is about to close, he flings it open, tosses the pyjamas onto the living room floor and dashes into the office, slamming the door behind him. Through the closed door, I hear him giggling hysterically.

“George,” I yell, pretending to sound stern. “Put your pyjamas on!”

He comes back into the living room and flops down in front his computer, pretending to ignore me. I get up and stand in front of him, wordlessly pointing at the pyjamas that are still lying on the floor where he threw them. He picks them up and puts them on, this time taking off his clothes first.

I sit back down, knowing that this is not over. George wanders around for a few minutes, playing on his computer, making words with his alphabetic magnets, playing a few notes on the keyboard. I turn my attention back to whatever I was doing.

Five minutes later, I hear his voice right beside me.

“What happened, George?” he says in an astonished tone, as if he’s reprimanding himself. I look up, and he’s standing there wearing nothing but his undies. I sigh and roll my eyes.

“What happened, George?” I ask, mimicking him. He giggles and runs away. No matter. He’ll be back thirty seconds from now. Or two minutes, or ten minutes – whenever he’s ready. You can’t rush these things.

When he does return, he has his pyjamas on upside down. Yes, you read that correctly. There is a way to put pyjamas on upside down, and my son has discovered it. He has put one leg of the pyjama pants over his head and the other down one arm. His legs are in the sleeves of the pyjama top, which he is holding at the waist.

“Duck pie!” he yells gleefully, with a gleam in his eye.

“Duck pie! Duck pie! Duck pie!” he chants as he prances around the house. He laughs as if it’s the funniest thing in the world, and we all laugh right along with him, not only because it is indeed the funniest thing in the world, but because he has the most delightfully infectious laugh.

Eventually, the Duck Pie Dance comes to an end and George puts on his pyjamas properly. He goes to bed and sings to himself for a while before drifting off to sleep, and I smile to myself, already looking forward to tomorrow’s performance.

This is an original post by Kirsten Doyle. Photo credit to the author.

post

10 Things I’ve Learned As An Autism Parent

2013-02-02 11.04.07

My son George was diagnosed with autism six years ago, almost to the day. Most of what I’ve learned about autism since then has come not from books and websites, but from my own day-to-day life as a special needs parent. Here are some of the more surprising things I have learned over the last six years.

1. I do, in fact, have the patience to be a good special needs mom. No-one would ever have thought so when I was a child. Just ask any of the dolls that I used to have guardianship of.

2. Kids with autism often develop unique problem-solving skills, and I think this is borne from sheer perverse bloody-mindedness. If my kid with autism wants something, my kid with autism will figure out how to get it, in the face of all possible obstacles. Eventually, it becomes more about the principle than about the object. Things like locked doors and passwords are seen by my son as temporary roadblocks, not as actual barriers.

3. Corollary to #2: In my house, there is no such thing as a “safe place to keep stuff.”

4. Hell hath no fury like a child with autism who loses his hat. None of the six identical hats in your closet will do. You’ll just have to turn your house upside down and inside out until you find that hat.

5. If a child with autism gets a urinary tract infection that requires him to provide a urine sample, he will think that he now has to pee in a cup every time. You will have to watch him closely to make sure he doesn’t take any of your coffee mugs or measuring jugs into the bathroom with him.

6. Mr. Potato Head rules forever. We have just started our third jumbo-sized Rubbermaid tub of Mr. Potato Head stuff. When George is 45, he will be in the Guinness Book of World Records for having the biggest collection of Mr. Potato Heads. If he continues with his current trend, he will have about 6000 of them by then.

7. A child with autism can become the household’s unofficial tech support person from the time he or she is three. That was the age at which George literally elbowed me out of the way with an impatient click of his tongue, in order to effortlessly fix the DVD player that I had been struggling with for forty minutes.

8. Having a child with autism is like having a living, breathing GPS that knows the location of every single Tim Hortons coffee shop in a 75-mile radius.

9. Boys with autism are, above and beyond all else, boys. A couple of weeks ago, my almost non-verbal child said to me, “I spy with my little eye something that’s a white bra.” He then lifted up my shirt to peek at my bra and ran away giggling.

10. It is possible for a nine-year-old boy to sit on a can of apple juice.

(Photo credit: Kirsten Doyle)

post

12 Reasons You Know You’re An Autism Parent

SAMSUNG

1. Your son will defend to the very last his right to wear his hat at all times. Even while he’s sleeping.

2. When you’re cutting your child’s nails the neighbours come over to ask whose kidney is being forcibly removed.

3. If the coffee machine is moved one gazillionth of an inch to the left, World War III becomes a real possibility.

4. Your nine-year-old can fix any computer problem you throw at him in about three seconds.

5. You want to ask the Mythbusters team to investigate whether “full night’s sleep” really exists.

6. Your child has 237 Mr. Potato Heads and they are lined up according to the colour of their hats.

7. The transition from winter clothes to summer clothes and vice versa has to be planned like a military strike.

8. Your son doesn’t have a teacher, he has a team.

9. You bond with your kid by stimming with him.

10. You throw a party to celebrate when you catch your child telling a lie.

11. You throw a party to celebrate when your child drops an F-bomb in the right context.

12. If your kid has to give a urine sample, he then thinks he has to pee in a jar every time.

post

Autism and Bedtime: 11 Steps For Not Going Completely Insane

 

The Hyperactive Neurotypical Child

Since the beginning of time, when Adam and Eve got talked into eating an apple by a psychotic snake, women – and to a lesser extent, men – have been pondering the same question. It is a question that crosses all geographic, ethnic, cultural and religious boundaries, one that unites mothers in a way that nothing else can.

How am I going to get this child to sleep?

When there’s a child with autism in the family, that question crops up with frightening regularity. It becomes an automatic response to just about everything. Here’s a typical conversation between husband and wife while the kid with autism bounces on the ceiling like a yo-yo:

Husband: What should we have for dinner tonight?

Wife: How am I going to get this child to sleep?

Husband: Ummm. I don’t know. So, dinner. What do you think? Chinese takeout?

Wife: Sure, sure. How am I —

Husband: Do you want chop suey or chow mein?

Wife (sobbing): How am I going to get this child to slee-eee-eeeeeep?

Husband (fumbling awkwardly with takeout menu): OK, I’ll just order something.

For you autism parents who are feeling a little desperate, I offer you my Bedtime Survival Tips.

1) Make sure you have wine. You won’t need it for the bedtime ordeal itself, but it will a great reward for you to give yourself if when the kids get to sleep.

2) About two hours before bedtime, sweetly ask the fruits of your loins to put on their pajamas. You’ll have to ask both of them about a gazillion times before they comply, so the more lead time you give yourself, the better.

3) An hour before bedtime, calmly talk to the Hyperactive Neurotypical Child and ask him to put on his pajamas. If When he argues on the grounds that his brother doesn’t have pajamas on, explain to him that you need him to lead by example. Bribe him with a donut.

4) Send your husband out to buy donuts.

5) Repeatedly tell the Autie to put on his pajamas, with your voice gradually increasing in pitch and panic. Right before you hit your breaking point, sob with relief when you hear your husband return with the donuts. Armed with your confectionary currency, coax your kids into their pajamas and then give them their reward. Fail to care when they wipe their gooey hands all over the fronts of their nice clean pajamas.

6) Sergeant-Major the kids into the bathroom one at a time to pee and brush their teeth. Do the Autie first. If you do the Hyperactive Neurotypical Child first, the Autie will head for the hills and you won’t see him until next Christmas.

7) Get the kids their bedtime milk. Remember to break a Melatonin capsule into the Autie’s milk, otherwise he will spend the entire night gleefully and vigourously rubbing the top of your head.

8) Channel the days when you used to herd cats and get your kids moving in the general direction of their rooms. Naively believe the Hyperactive Neurotypical Child when he says he’ll quietly try to go to sleep.

9) Kiss the little darlings goodnight and retreat into the living room. If When one of them makes a sudden appearance by your side, calmly shepherd them back to bed.

10) Repeat Step Nine 84 times.

11) When there has not been any activity for three geological eras, you can safely assume that the kids are asleep. Pour some of the wine from Step One into a glass and drink. If you’re feeling really frazzled, cut out the middleman and just drink straight from the bottle.

(Photo credit: Kirsten Doyle)

post

A Story About Wine

Dad

Yesterday, December 6th, was the 8th anniversary of my father’s death, and as always on these anniversaries, I had a glass of wine in his honour. Now, me drinking wine in the evening after the kids are in bed is nothing unusual, but when I’m toasting Dad, I go to a bit of extra effort. Instead of opening any old plonk that happens to be handy, I take the time to find a bottle of nice wine, the kind of wine Dad would enjoy.

In life, Dad had a true appreciation for fine wine, and he had an impressive collection. Where I’m the kind of person who will buy a bottle of wine and promptly drink it, Dad actually collected it. Every bottle he got was meticulously marked with the date of acquisition, and if it was a gift, it would also be marked with the occasion and the name of the person who had given it to him. The wine would then be put into one of the wine cabinets and left to age as appropriate.

Dad belonged to the Wine Of The Month club, and the bottles he received from them were treated to the same attention to detail. His last shipment arrived about three weeks before he died, and as sick and fragile as he was, he waved away offers of help and lovingly made his annotations on each bottle.

A love of wine is just one of the things I shared with Dad. We spent many evenings sitting out on his patio, enjoying the last of the day’s warm South African sun, sipping wine as we discussed the other interests we had in common, like running or books. Even after I moved to Canada, we chatted to each other about what wine we were drinking. It always felt as though I was still drinking wine with him, even though he was on the other side of the world.

And so, the first time I opened a bottle of wine after he died, it felt a little odd. It didn’t feel right, somehow. Dad clearly didn’t think it was right either, because judging from how that particular wine-opening went, he was there and he was trying everything in his power to prevent that wine from being opened.

The scene unfolded two days after Dad’s funeral. My mom, my brother and I were having lunch at my aunt Ann’s house, along with some of my cousins. Lunch at Ann’s house was always a feast. She was – may she rest in peace along with Dad – a master in the kitchen. Her fine food had to be accompanied by fine wine.

While the others sat chatting at the dining room table, I was in the kitchen with Ann. She was transferring food into serving dishes, and I was opening the wine. In those days, most bottles of wine had corks. Not that weird composite plastic stuff you get these days, but real, honest-to-God corks.

I did my thing with the corkscrew, and the cork came partway out of the bottle, and then it just stopped. You know how corks sometimes just get stuck, and no amount maneuvering will get them to budge? This was one of those corks. I was not deterred, though. I had several years as a university student behind me – I was capable of getting any wine out of any bottle, no matter what impediments stood in my way.

I extracted the corkscrew from the cork, grabbed a breadknife, and used it to saw off the bit of cork that was sticking out of the top of the bottle.

I could almost hear Dad spinning in his coffin.

I set about using the corkscrew on the remaining piece of cork. I got it firmly in place and then started the process of getting the cork out.

The corkscrew broke.

So to sum up the situation I had the following: a wine bottle with half a cork in it. Said half-cork had half a corkscrew in it. And most importantly, there was wine inside the bottle that was stubbornly remaining inaccessible to us.

By this stage, Ann and I were in absolute stitches of laughter. Ever the graceful hostess, Ann did a skilful job of politely heading off anyone who tried to come into the kitchen wanting to know what was so funny.

Fortunately, Ann was a great believer in contingency planning, so she had a backup corkscrew which she produced with a flourish, like a magician. Through a series of hit-and-miss stabby attempts, we finally got the cork out.

The good news was that we had freed the wine within the bottle. The bad news was that it was riddled with cork.

No problem.

Ann and I strained the wine into a plastic measuring jug, rinsed the bottle to get rid of any stray bits of cork, and then restored the wine to its rightful receptacle. I mean, we had to. There was no way we could show up to the dinner table bearing a plastic jug full of wine.

That hard-earned wine was some of the best I ever tasted, as if the person whose life we were toasting had sprinkled a little bit of magic into it.

 

post

These Are A Few Of My Favourite Things

This week I am participating in the WEGO Health “Advocating for Another” carnival. Over the next few days, I will be answering blog prompts to talk about our life as an autism family. All of the posts on my blog this week are dedicated to my son James, in recognition for what an amazing brother he is.

Today’s prompt: A few of my favourite things – Write 5-10 of your favourite things about your loved one. Celebrate their uniqueness and be sure to tell us why those are your favourite things.

I make a big deal of the fact that my boys are great brothers to one another, and that is something that means a lot to me. I try to encourage a positive relationship between them in whatever ways I can. Today, though, I want to celebrate them as individuals.

 

A few of my favourite things about James

1. He is snuggly. When he is sleepy, or simply wants a cuddle, he climbs into my lap and his body relaxes completely against mine. At those moments, he is like my very own teddy bear, all softness and warmth. No matter how bad I might be feeling on any particular day, those snuggles bring a smile to my face. Because how could that not make me feel better?

2. He has a natural sense of empathy that goes beyond his own family. He truly cares about what is going on with other people, and he has an uncanny ability to walk a mile in someone else’s shoes. This is one of the things that makes being around him such a magical experience.

3. He has a great imagination. His mind travels to places that would be beyond my wildest dreams. He creates stories about dragons and princesses, about magic toucans on faraway worlds, about unicorns that glitter and shimmer in the dark and fly to the tops of mountains. If you ever want to escape for a while, all you have to do is ask James to tell you a story.

4. He likes running. This interest may or may not stay with him, but for now, I am really enjoying the fact that he likes to go out for little jogs with me. Running was an interest that I shared with my dad, and to be able to share it with my son as well is tremendously special. It is a lot of fun, and it gives us a bit of time together, just the two of us.

5. He is passionate about what he believes in. OK, sometimes the passion comes across as a drama queen kind of attitude that drives me insane, but I love that James speaks his mind. I love the fact that he has strong opinions and a willingness to express them.

A few of my favourite things about George

1. Many people think that children with autism are not capable of affection, but George definitely is. He has a heart full of love and an endless supply of hugs for those dear to his heart. He is tall and gangly, but he is still just about able to clamber onto my lap for a hug. When he outgrows that ability, I will be truly sad.

2. He is a very funny kid. He finds humour in the oddest places and is so enthusiastic about it that we cannot help finding it absolutely hilarious. The humour is handily packaged with the most infectious laugh you ever heard. Once George gets going with his laughter, that’s it. You may as well cancel whatever plans you had because you’ll be too busy rolling around on the floor.

3. He’s a technogeek. Some people just have a knack for figuring out how things work, and George is one of them. When he was about five, I was trying to get the DVD player to work. George watched me wrestle with the thing for a while, and then he clicked his tongue impatiently, elbowed me out of the way, and pressed one button to get the movie going. It is useful to have a built-in tech support person.

4. He is determined. George has definitely inherited a stubborn streak that is in both me and in his dad. If he wants something, he will find a way to get it. There is no problem that he gives up on, and he can be very resourceful in how he goes about finding a solution. Sometimes this is not great from a parent’s point of view, but I love the fact that George just does not give up. On anything.

5. He has a fantastic memory. He only has to go somewhere once in order to know its location, what there is en route, and how long it should take to get there. It can be a little awkward when we’re trying to get from Point A to Point B and George knows where every single donut shop in between is, but if we’re ever in doubt we can just ask him for directions. Who needs a GPS when you have a child with autism in the car?

(Photo credit: Kirsten Doyle)

post

Autism Through A Child’s Eyes

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 8 – Best conversation I had this week: Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.

I’m not much of a person for conversations. I suffer from social anxiety, so talking is difficult. I tend to be more comfortable finding my voice in the form of the written word.

Obviously, this is less of a problem when I am among friends and family. I am married to a man who, in addition to having a totally off-the-wall sense of humour, has no “inside voice”. The conversations I have with him range from the baffling to the downright hilarious.

I also have some great conversations with my younger son, James. For a six-year-old, his vocabulary is astounding, and his imagination knows no bounds. He weaves in and out of topics at will, and you can never tell where the conversation will go next. One moment he seems to be wise beyond his years; the next, we are reminded that he is still a kid finding his way in this world.

A few days ago, we had this conversation while I was cooking dinner:

James: Mommy, can you buy me a water gun?
Me: Why do you want a water gun?
James: So I can spray Granny on the nose.
Me (after snarfing on my coffee): Why do you want to do that?
James: Because her nose is dry and that means she’s sick. Roger (a classmate) said so.
Me: Roger said that Granny is sick if her nose is dry?
James (looking at me as if I’m nuts): No. He was talking about his dog.
Me: Ummmm, James? Dogs and people aren’t the same. Granny’s nose is fine.
James: I think Roger’s dog has autism.
Me: What makes you think that?
James: He doesn’t talk and he knocks down Roger’s Lego towers. It’s not his fault, though. He doesn’t know what he’s doing because he has autism.
Me: James, that’s just the way dogs are. Dogs don’t have autism.
James: How do you know?
Me: Ermmmmm (thinking: the kid has a point)
James: Mommy?
Me (wondering about James’ sudden sombreness): Yes, buddy?
James: Will George always have autism?
Me: Yes, baby, he will. Autism is not something he can grow out of.

I want to pause this account briefly to say that where autism discussions with James are concerned, I find that honesty is the best policy. I don’t try to sugar-coat anything, and I answer questions without elaboration. This approach seems to be the one that works best with James.

James: That’s OK. I love him.
Me: I know you do. And he loves you too.
James: Yeah! Mommy?
Me: Yes?
James: Will George die from autism?
Me: No, people cannot die from autism. We just have to make sure we keep him safe.
James: It’s OK, Mommy. I’ll take care of him.

Yes, I cried.

(Photo credit: Kirsten Doyle)

post

Twitter Tuesday: #youmightbeanautismparentif

On Sunday evening I was wandering around in Twitterland seeing if anything interesting was going on, and I noticed a certain hashtag popping up in my timeline not once, not twice, but many time. For those who are not Twitterites like me, a hashtag is a topic that people are Tweeting about – kind of like a conversation. So if you’re tweeting about broccoli (and really, who would tweet about broccoli?) you would add the following to your tweet: #broccoli.

Anyway, the hashtag that was appearing on Sunday night was this: #youmightbeanautismparentif.

Well, this looked like fun! Autism parents were tweeting about some aspects of raising a child on the spectrum. Some of the tweets were poignant, some were downright hilarious, and every single one of them was true. So I thought I would share some with you. What follows is a sampling. To get the full picture, go to Twitter and search for the hashtag #youmightbeanautismparentif.

So here goes. You might be an autism parent if:

  • you start to write your coworkers a social story about why they shouldn’t use your stapler (@BartimusPrime1)
  • Your child is self-taught on both a PC & a MAC, preferring to operate both simultaneously (@theblondeview)
  • You celebrated and took a pic the first time your daughter drew on a wall. (@NationalAutism)
  • you know there are TOO MANY ways to end the sentence, “The bathroom is NOT a good place to…” (@FroggyPrinceMom)
  • you wouldn’t change your child for the world- but want often to change the World for your child (@helenhamill)
  • you have a swing. In the middle of your living room. (@RaisingASDKids)
  • one moment, you feel completely alone & the next, you’re a part of a large, passionate & supportive community. (@autismfather)
  • you are happy when your child gets in age appropriate trouble (@RaisingASDKids)
  • you constantly praise your kid for NOT peeing down the air vent (@laughinblues)
  • your kid just dropped a grape and now the ENTIRE day is ruined. (@WhacamoleLife)
  • your child is offended that Robin Hood called a big man “Little John” because that’s a lie. (@BobbiSheahan)
  • the Christmas Nativity scene on the mantle includes dozens of animals facing the same direction. (@LeftCoastJeff)

I made my own contributions to this thread. Here are a few of them. You might be an autism parent if:

  • your kid screams the roof off because the letter M on his computer keyboard broke.
  • you’ve ever had to defend your vaccination choices to complete strangers.
  • the dishwasher ALWAYS has to be closed and the living room door ALWAYS has to be open exactly 3.26384 inches.
  • cutting the cheese sandwich into triangles instead of squares starts World War III.

What do you think? Feel free to add to the list in the comments, or join the Twitter conversation and be sure to follow me @running4autism.

post

How To Get Rid Of Telemarketers

My son George has a new party-trick. He opens the living room door just so he can have the pleasure of slamming it. As he slams it, he yells out some random thing. Some days, that’s all I hear. Open. Yell. SLAM! Open. Yell. SLAM! Open. Yell. SLAM!

It does my head in.

Reprimanding George for it is a useless endeavour. It’s one of those autism things that he cannot really help. He’s getting some sensory satisfaction from it, and while we are going through the process of using rewards and reinforcements to stop the behaviour, we just have to grit our teeth and put up with it. I’ve been through this before with Cupboard Door War of 2010 and the Dishwasher War, which is ongoing, but on which I am finally starting to make progress.

It’s just my bad luck that my home office space is right beside the door that is the current object of George’s attention.

On Saturday, the phone rang right around the time George started another door-opening-yelling-slamming spree. With a shhhhhh! in George’s direction that I knew would be futile, I punched the speakerphone button and answered. It was a telemarketer, trying to sell windows and blinds. These people call us incessantly. They must think I have twenty-two gazillion windows and blinds on my house, all of which need replacing.

As I was preparing to politely tell the caller that I was not interested, George opened the door. I asked the caller to hold on for a moment, so that I could get the yelling and slamming out of the way before I spoke.

The words George chose to yell at that moment were so appropriate to the situation that I couldn’t help laughing.

“Not now,” yelled my son at the top of his lungs, “NEVER!!!!

Surely the windows-and-blinds people would have gotten a clear message from that.