- A week ahead of time, start showing your autistic child pictures of Santa Claus, and tell him that this is the dude whose knee he will be sitting on in order to get a picture taken. Try your best not to be distracted by the neurotypical five-year-old sibling who is bouncing around like the Energizer Bunny on steroids yelling, “Ho ho ho! Hairy Christmas!”
- At T minus two days, have a dress rehearsal at your house. This is imperative if you want the autie to wear a suit and tie and he has a tendency to melt down if you try to get him to wear shirts that don’t have horizontal stripes. You’ll probably want to have another dress rehearsal the day before.
- The evening before, bath your kids and wash their hair. Do the autie first. If you do the hyperactive neurotypical child first, the autie will head for the hills the second he sees the shampoo bottle. Instead, let the hyperactive neurotypical child dive for cover, hide the shampoo until it’s time to use it, and have a reward system handy. I use gummy bears. Whenever the autie opens his mouth to scream, I just shove another gummy bear in. I have become a master at washing a screaming, flailing autistic child’s hair in less than ninety seconds.
- Try not to think of the fact that sometimes, ninety seconds feels more like ninety years.
- When you wake up on the morning of the Santa visit, call the photographers who are doing the pictures. Tell them that you have a child with autism, and that if he’s made to wait in line he will have such a bad meltdown that the entire building will crumble and the place will end up looking like an archaeological dig. Most people will accommodate you if they know ahead of time that your child has special needs.
- Bring changes of clothes for the kids. As soon as the picture has been taken, the autie will want to put on a shirt with horizontal stripes, and if one isn’t available there will be trouble.
- Right before you leave your house, call the photographers again and find out if all their equipment is working. Technology comes with its share of problems, and if you have wait around while they try to get their printer to connect wirelessly to their laptop, your frustrated kids will band together with all of the other frustrated kids who are there, and they will start a Lord Of The Flies kind of mutiny. Believe me, you don’t want to caught with a crowd of angry children. They will overpower you. They will tie the grown-ups to poles and dance around them holding spears and chanting.
- Don’t let the absence of spears fool you. Kids can be frighteningly resourceful, especially when they are ticked off and have among their number an autistic child who knows how to think outside the box.
- When you are granted entrance to Santa’s domain, don’t mess around. Say hi to Santa, get the picture, and leave. Don’t wait for the autie to make eye contact with the camera lens. You will be waiting until the cows come home.
- When it’s all over and you are sobbing in the bathroom from the stress of it all, remember that this experience was positive. As you look at the picture, don’t think about all of the planning and angst leading up to it. Reflect on the fact that you have succeeded in doing a typical family activity. You have brought immense joy to the hyperactive neurotypical child, who shouldn’t be deprived of the opportunity to sit on Santa’s knee. And you have taken another step toward teaching your autistic child some vital coping skills that will help him for the rest of his life. Know this, and feel good about what a great parent you are.
Santa Pictures And The Autism Family: 10 Ways To Not Go Completely Insane
November 14, 2011 By
Autism Brothers
November 8, 2011 By
Sometimes, when you’re five years old and your big brother has autism, life just isn’t fair.
This weekend I spent a lot of time worrying about my son James. The worrying was prompted by reports from his before- and after-school program that he’s been acting up and is “always in trouble.” Initially, my husband and I put this down to James’ independent nature. He is a strong-willed child who is currently going through a phase of pressing other peoples’ buttons and seeing how far he can go.
But my gut instinct is telling me that I shouldn’t be giving James a hard time about his behaviour in the program – at least, not yet. Not until I have had a meeting with the program administrators to get a clearer picture. I have this nagging feeling in the back of my mind that there is something else going on here, something that might be making my baby unhappy.
About six weeks ago, we went through a decluttering blitz at my house. We got rid of toys and clothing that the boys had outgrown, and we threw out stuff of our own that has been lurking in boxes in our basement since Noah built the ark. One of the items we found was a calendar from a Chinese restaurant. It has the entire year on one long piece of fabricky-type stuff that rolls up like a mini-blind. James was fascinated with this thing and asked if he could have it. I said yes, and passed it over.
Last week while James was playing with the calendar, George kept grabbing at it and saying, “Mine!” James was getting upset because George was bugging him, and George was getting upset because he wasn’t getting the calendar. The situation escalated to the point of George having a meltdown and trying to headbutt James. And in order to stop George from going off the deep end, my husband took the calendar from James and gave it to George.
James was devastated. He sobbed his little heart out. It was bedtime anyway, so I carried him to his bed, lay down beside him, and held him tight. My own heart felt like it was breaking.
James didn’t see that my husband had been trying to stop a bad situation from going completely out of control. He just saw that we had taken away something that belonged to him, and given it to George.
There have been other times when George has gotten what James must perceive to be preferential treatment. We have to make allowances for George’s tolerances and levels of understanding. When James gets a timeout, he understands that he is being punished for something. This is completely lost on George: consequently, George never gets timeouts. We have different expectations of the two boys where it comes to sharing their toys with each other. Sometimes, family outings have to be cut short because George is not coping.
I cannot help asking myself: is it any wonder that James is trying too hard to assert himself in an environment other than home? Could it be that his perceived lack of control within his family is leading him to try and establish it elsewhere?
I try hard to make it up to James in other ways, but I wonder if I am doing enough. My mind keeps coming back to the idea that this poor kid probably doesn’t even have faith that his toys will remain his own. I worry about whether we are expecting James to have more coping ability than he is developmentally capable of.
It is clear to me and my husband that James loves his brother. He is always – with increasing success- trying to get George to play with him. When George is being reprimanded for something, James is standing up for him. And sometimes, when James wakes up from a bad dream in the middle of the night, he crawls into bed with his big brother and the two boys snuggle up to each other.
As much as they love each other, though, it seems to me that at times, the happiness of one has to be sacrificed for the needs of the other.
And that just isn’t fair.
(Photo credit to the author)
Stopping To Smell The Roses
August 30, 2011 By
Look what I have...
For a number of reasons, I find my morning commute to be far more palatable than the afternoon commute. I rarely wait more than three minutes for a bus to the subway station. Because I board the subway at the end of the line, I always get a seat. The morning commute is faster and generally more pleasant – or at least, less unpleasant.
In the afternoon, I am tired and cranky, and my head is full of work-related stress. I am forced to squeeze myself onto an already jam-packed subway train, and when I emerge at my destination, I have to spend seventeen geological eras waiting for a bus home. Because my chances of getting a seat on either the subway or the bus are less than my chances of being ordained as the Pope, my afternoon commute involves me being on my feet for well over an hour.
By the time I got onto the bus yesterday, I was dying of thirst and my head was pounding. I stood there on the bus, one squashed sardine among many, feeling hot and grumpy. I never regard my commutes as fun, but yesterday, I was even more fed up than usual. I stared at the floor for the entire thirty minute bus ride just to avoid accidentally catching anyone’s eye. That’s how much of a mood I was in.
As the bus pulled up to my stop, I breathed a sigh of relief at having made it home while simultaneously lamenting the fact that my evenings are always filled with chores and running around after people.
Yes, I was feeling pathetic and sorry for myself. I admit it.
But then… something amazing happened.
As I stepped off the bus, I saw my husband and my younger son James sitting on the grass near the bus stop. Thinking I was seeing a mirage, I rubbed my eyes.
James jumped up and yelled, “Mommy!” The sun shone on his curly blond hair and illuminated his entire being. I swear, the kid looked like an angel – a glorious shining light that swept away every ounce of negativity in me. He ran towards me with his hands behind his back. The smile on his face as he reached me could have split his face in two as he pulled his hands from behind his back and thrust a bunch of red roses at me.
I spent a few minutes sitting there on the grass with my husband and my son, basking in the sense of love and belonging, and literally stopping to smell the roses.
I think I will regard my afternoon commutes with a lot less angst from now on. Because look at what I have waiting for me at the other end.
(Photo credit to the author.)
Jon & Kate: Was TV To Blame?
August 16, 2011 By
The news is out: TLC are finally – finally – pulling the plug on Kate Plus 8. The last show will air about a month from now, at the end of the eighth season.
Not a moment too soon.
In the beginning, I had some interest in Jon & Kate Plus 8. I was not an avid fan who had to rush home in time for every episode. But if it happened to be on I’d watch it. Seeing this couple manage all of those kids made me feel alternately better and worse about the struggles I had juggling my two boys.
By the time the first season was over, though, my interest had waned. While I admired Kate’s superhuman organizational skills and Jon’s tolerance levels, it struck me – and probably most of the TV-watching world – just how mean they were to each other. This meanness seemed to escalate with each season, culminating in Kate barely saying a nice word to Jon and Jon running off to have an affair.
When Jon and Kate announced their separation, Kate was subjected to a lot of criticism over the fact that she decided to continue with the show. Phrases like “exploitation of the children” were bandied about a lot, and general consensus was that the pair of them should focus on the children during this difficult time, and not on the show.
While I agree with all of the above, I think the rot started a lot earlier. I don’t know what Jon and Kate were like together in the days before the show, but you have to assume that they were deeply committed to one another. You don’t go through the physical and emotional roller-coaster of fertility treatments with a partner you don’t see yourself going the distance with.
There’s really no way of telling whether the show itself was the cause of the problems between them, but it’s not a far-fetched notion. The dynamic of any relationship could be changed by the presence of cameras and producers who tell you to re-enact arguments to make them more dramatic and over-the-top.
Regardless of where things went wrong for Jon and Kate, I cannot help thinking that perhaps they should have put a stop to the show as soon as the problems began. If their energies had been dedicated to their relationship instead of the TV cameras, maybe things would have been better for them and their kids. Maybe they would have been able to save their marriage. Or at the very least, maybe they would have been able to part with fewer malicious words passed between them.
And of course, the question on the public’s mind is this: What about the children? How have they been impacted by the very public way in which their parents separated?
What will it be like for them when, one day, they look back at old tapes of the show and relive their family disintegrating in the public eye?
(Photo credit: http://www.flickr.com/photos/rittysdigiez/2983274366. This picture has a creative commons attribution license.)
Getting Into Hot Water
July 22, 2011 By
Just over two weeks ago, our water heater broke.
For reasons that I will not bore you with because it’s a long story, we are still living without hot water. A family of four plus a mother-in-law. The family of four includes two children who have a close one-on-one relationship with mud.
Bath time takes twice as long as it used to. Instead of simply running the bath for the kids, we have to dump buckets of cold water into the tub, and boil huge pots of water on the stovetop that then get added to the cold water so that the kids won’t go into shock when they get in.
What’s that you’re asking? Oh, why don’t we just run cold water from the tap? Because for whatever reason, the lack of water in the hot water tank has completely messed up the water pressure on the tap in the bathroom.
On the one hand, I am glad this did not happen in the middle of winter. Because then, heating the bath water to a bearable level would take three times as long. On the other hand, though, in winter you can get away with taking fewer baths. During the dog days of summer, however, when the temperatures are well over a hundred degrees, regular baths are kind of important.
The baths just take care of the kids. Gerard has a shower in his shop, and I have to traipse off the gym in order to avoid being one of The Unwashed. My mother-in-law goes to her sister’s house.
Once everyone is clean, we then have to deal with the dishes. Running the dishwasher is out of the question because it wouldn’t do the job very well, and because it’s not even connected to the cold water anyway. So dishes have to be washed by hand, and kettles full of boiling water keep having to be added to the water in the kitchen sink. Instead of taking ten minutes to clear the dishwasher and reload it, I am now having to spend up to an hour on this nonsense.
How on earth did people five hundred years ago get anything done?
Well. While the men were out conquering whatever they were conquering, the women were staying home and taking care of it all. It’s not like they had to spend two hours a day on the subway getting to and from a full-time job at the office. And besides, avoiding body odour wasn’t such an issue with them. They had annual baths every July, and the entire village shared a single tub of water for the occasion.
Apparently – apparently – our hot water will be reinstated within two or three days. I’ll believe it when I see it.
In the meantime, I just have to make the most of what I have. And drink wine to stop myself from going completely round the bend.
(Photo credit: http://www.flickr.com/photos/dustpuppy/5371295/)
Why I Don’t Eat Lentils, And Other Stories
July 2, 2011 By
My grandmother
It is the mid-1980’s. I am fourteen years old, in ninth grade, and I am sleeping soundly. In the early hours of the morning, I suddenly wake up with a jolt. Somehow, I just know that my grandmother has died. I know this with the same certainty that I know the sun rises in the east. Granny has had a cold, but her health has been as good as can be expected for a woman in her 80’s. There has certainly been nothing to indicate her impending death. And yet, as I wake up, I know for a fact that she is gone, but I don’t have a clue as to how this knowledge has come to me.
As I lie in bed wondering what to do with this knowledge, I hear the phone ring. I listen to the sounds of feet running to answer the phone, followed by the muted tones of conversation. My door opens and Mom comes into the room. She seems surprised to find me awake so early.
“Granny has died,” Mom tells me.
“I know,” I say. Mom looks at me a little oddly, but lets my remark go, probably putting it down to just-woken-up bleariness. I sit up in my bed and Mom and I hug one another. She has lost her mother and now has no surviving parents. I have lost my grandmother, a woman I had loved dearly.
This loss is going to be hard on both of us.
One of the earliest memories I have of my grandmother is her lentil soup. The woman was a marvel in the kitchen – not so much because of the quality of her cooking, but because of her uncanny ability to create full meals with virtually no ingredients. She had raised three kids on her own while my grandfather was fighting in World War II, and lack of both supplies and money had made her very inventive and resourceful.
She used a lot of lentils. Lentils were cheap and nutritious, and there was apparently no problem getting hold of them during the war. Old habits die hard, I suppose, so thirty years after the war had ended, when supplies were plentiful and the economy was strong, my grandmother was still making her lentil soup.
It was, without any doubt whatsoever, the worst lentil soup. Ever. Granny would dish out these bowls of the stuff for her seven grandchildren, and make us sit at the table until we had finished it all. I mean, I know it was good for us and everything, but it just tasted so – horrible.
To this day, my friends, I cannot eat lentils. Not in soup, not in salad, not in anything. Those dark days of lentil soup tyranny ruined me for lentils forever.
Fortunately, there was a flip side to the lentil soup. My grandmother made the BEST banana fritters in the whole world. Let me tell you how good these things were. I don’t like bananas. I hate the taste, and I hate the texture, and I’d rather set my face on fire than eat them. But Granny’s banana fritters? I could eat those things until the cows came home. And she was the only one who could make them. She did give me the recipe, and I tried, but she just had that magic touch. When she died, so did the fritters.
I was quite an accomplished pianist in those days. I was very serious about it, and every year I would do practical piano exams to advance another level. I was always allowed to take the whole day off school on music exam days, and when the exam was done, my mom would drive me straight over to my grandmother’s place, where there would be some freshly made banana fritters waiting for me, made in honour of that day’s accomplishment.
Every summer, I spent a week or so with my grandmother. She lived on a large property off the beaten track, and there were acres of open space to play in. She had loads of dogs (including an ancient fox terrier named Chaka Charlie who always made me feel a little freaked out), and a coop full of pigeons. My cousins lived just down the road, and together we would play elaborate adventure games in Granny’s massive yard.
And in the evenings, after dinner, Granny and I would spend hours playing checkers. We would drink our tea and eat chocolate-dipped shortbread made by my aunt, who lived with my grandmother and still lives in the house today. And we would play endless games of checkers. Granny was a master at the game, and although I did win from time to time, this was very, very rare.
The last time I stayed over at my grandmother’s place, she asked me if I would teach her to play chess. Immediately, I agreed. This would be fun. My grandmother definitely had the mind for chess. She would have been fantastic at it.
As it happened, though, I woke up one morning when I was fourteen, and before the phone had even rung, I knew that my grandmother was no longer with us. I never got to teach her how to play chess.
I’ll always have the memories, though.
I just wish I could figure out how to make those banana fritters.
The Beauty Of Autism
May 31, 2011 By
"Peep And The Big Wide World" by George
It was a beautiful moment. One of those moments that autism parents celebrate, that parents of neurotypical children completely fail to notice.
I got home after a long, hard day at work, feeling tired and cranky. As I trudged my way up the driveway, all I wanted to do was grab a glass of wine, collapse into a chair, and never get up again. I didn’t just feel lethargy. At that moment, I was lethargy.
I opened the front door and stepped into the house. Moments later, I heard a pair of feet thundering up the stairs from the basement, and a seven-year-old whirlwind launched itself at me, almost knocking me to my feet. After giving me a ferocious hug, George said, in his sweet sing-song voice, “Hi, Mommy!”
Without me saying hi to him first.
Without me or anyone else prompting him.
This was a social exchange that was initiated completely, 100%, by my child with autism – my child who has, as one of his biggest challenges, social communication difficulties.
Instantly, my energy was back and I was ready to laugh and play with my family, with this amazing child who always seems to give me surprises of wonder.
As a special needs mom, I find that my life is punctuated with moments like this. I remember firsts that I probably wouldn’t even notice if I didn’t have a child with autism.
Like the first time he pointed. What a joyous occasion that was, coming as it did after almost a full year of me teaching him how to point. I blubbed my eyes out that night, all over the Bob the Builder book that had been the vehicle for this accomplishment.
Then there was the first time he made a request using a full sentence. It didn’t matter to me that the sentence was only three words long. This child who said, “I want juice” was streets ahead of the child who, just a few months before, had indicated his need by grabbing my hand and thrusting it in the general direction of the juice boxes.
And what about the first time he pretend-played? It was a simple game that consisted of George crouching down on the ground, and crawling around with his back arched skyward while repeatedly saying, “Turtle.” So what if it was unsophisticated play that included only himself? He was pretending – something he had never done before.
More recently, we celebrated him drawing his first picture. He’d made lots of scribbly-type drawings in the past, of course (and I have kept every single one of them), but this was his first picture depicting an actual scene. That it was an instantly recognizable scene from his favourite kids’ show, Peep And The Big Wide World, makes it even more special.
We have seen the advent of humour, and this is all kinds of significant. Humour is a complicated intellectual process, and George gets it. And let me tell you, he is funny.
All of these moments, when strung together, tell a story of a very special little boy who is making a journey through life that is somewhat different to the way other kids do it. But the point is that he is making the journey and having all kinds of adventures. He may be taking the scenic route, but ultimately, he does pass through the same places that other kids do. He achieves many of the same things, but it takes a little longer and is accomplished in unconventional ways.
I believe that having a child with autism makes me a better parent than I would be otherwise.
It has given me the ability to spot a single flower in a sea of long grass, and more importantly, the power to stop and smell every single flower that I pass on this journey through my kids’ childhoods.
The Beauty Of Autism
May 31, 2011 By
"Peep And The Big Wide World" by George
It was a beautiful moment. One of those moments that autism parents celebrate, that parents of neurotypical children completely fail to notice.
I got home after a long, hard day at work, feeling tired and cranky. As I trudged my way up the driveway, all I wanted to do was grab a glass of wine, collapse into a chair, and never get up again. I didn’t just feel lethargy. At that moment, I was lethargy.
I opened the front door and stepped into the house. Moments later, I heard a pair of feet thundering up the stairs from the basement, and a seven-year-old whirlwind launched itself at me, almost knocking me to my feet. After giving me a ferocious hug, George said, in his sweet sing-song voice, “Hi, Mommy!”
Without me saying hi to him first.
Without me or anyone else prompting him.
This was a social exchange that was initiated completely, 100%, by my child with autism – my child who has, as one of his biggest challenges, social communication difficulties.
Instantly, my energy was back and I was ready to laugh and play with my family, with this amazing child who always seems to give me surprises of wonder.
As a special needs mom, I find that my life is punctuated with moments like this. I remember firsts that I probably wouldn’t even notice if I didn’t have a child with autism.
Like the first time he pointed. What a joyous occasion that was, coming as it did after almost a full year of me teaching him how to point. I blubbed my eyes out that night, all over the Bob the Builder book that had been the vehicle for this accomplishment.
Then there was the first time he made a request using a full sentence. It didn’t matter to me that the sentence was only three words long. This child who said, “I want juice” was streets ahead of the child who, just a few months before, had indicated his need by grabbing my hand and thrusting it in the general direction of the juice boxes.
And what about the first time he pretend-played? It was a simple game that consisted of George crouching down on the ground, and crawling around with his back arched skyward while repeatedly saying, “Turtle.” So what if it was unsophisticated play that included only himself? He was pretending – something he had never done before.
More recently, we celebrated him drawing his first picture. He’d made lots of scribbly-type drawings in the past, of course (and I have kept every single one of them), but this was his first picture depicting an actual scene. That it was an instantly recognizable scene from his favourite kids’ show, Peep And The Big Wide World, makes it even more special.
We have seen the advent of humour, and this is all kinds of significant. Humour is a complicated intellectual process, and George gets it. And let me tell you, he is funny.
All of these moments, when strung together, tell a story of a very special little boy who is making a journey through life that is somewhat different to the way other kids do it. But the point is that he is making the journey and having all kinds of adventures. He may be taking the scenic route, but ultimately, he does pass through the same places that other kids do. He achieves many of the same things, but it takes a little longer and is accomplished in unconventional ways.
I believe that having a child with autism makes me a better parent than I would be otherwise.
It has given me the ability to spot a single flower in a sea of long grass, and more importantly, the power to stop and smell every single flower that I pass on this journey through my kids’ childhoods.
Time’s A Bitch, But I’m Gonna Beat It
May 25, 2011 By
I am having a battle with Time. This battle has been going on for a while, and I confess that for the most part, I have been letting Time win. I’ve decided that from now on, I’m going to stand tall, square my shoulders, hoist up my big girl panties, and KICK TIME IN THE ASS!
I am tired of the following statements being rules of my life:
– I don’t have time to run.
– I don’t have time to write.
– I don’t have time to cook nutritious meals.
– I don’t have time to get enough sleep.
– I don’t have time to relax with my family.
Basically, all I have time to do is commute, work, commute again, and then do a different kind of work when I get home.
This is no way to live. And I’m not going to do it anymore. I’m going to take the time to sort out the logistics of my life, so that going forward, I can do the stuff that matters.
I’m going to systematically go through the stuff in my house and throw crap away so that I can have the physical space to be organized. (I’ve already made a start on that – this weekend I cleaned out my kitchen cupboards and linen closet, and Freecycled three big garbage bags full of baby things).
I’m going to get all of my paperwork filed and up to date, and THEN I’m going to deal with things as they come in instead of waiting for a big fat pile of papers to be teetering over like the Leaning Tower of Pisa. (I’ve made a start on that too).
I’m going to prepare kids’ clothing and lunches for the following day, and get my own stuff ready as well, as soon as I get home from work. That way it will be over and done with, and I won’t be dashing around at eleven at night looking for the kids’ socks or trying to find an apple to slice up for a lunch box.
I’m going to go to bed at a reasonable time.
That way, I will be able to get up early to RUN.
I will have time to write, time to cook real food, time to live my life the way it should be lived.
And with all of the crap and clutter out of my way (physical and mental clutter), I will have time for the most important stuff of all. My husband and children.
So that’s the plan, and I am publicly declaring it here.
Now, wish me luck. I think I’ll need it!
(Photo credit: http://www.flickr.com/photos/atportas/329630852)
Time For Each Other
May 22, 2011 By
So, my post a day initiative has gone to goat shit lately. Sometimes life has this annoying habit of getting in the way of stuff we really want to do. Having said that, this evening me and my husband took some time to be together in a special way. He came home from work (yes, he was working on a Sunday due to a ridiculous deadline), and we had a picnic. Right in our front yard. We had nice fresh-baked bread, some cold cuts, cheese, and wine. And we spread out a blanket in the front yard, and sat there eating our food and drinking our wine. And just being together.
After a while, the kids migrated from the back yard to the front yard, and they joined our little picnic. James showed us some games that he tells us are virtually mandatory at picnics. Red Light, Green Light. Doggie, Doggie. Bug In The Rug. We played the games with him. It was lovely.
Sometimes we struggle to find time to just enjoy ourselves, either as a couple or as a family. But when we do, it is totally worth it.
Being married is awesome. Yes, we have lived together for ten years now, so in practical terms, nothing has changed. But somehow the depth of our love for each other is more pronounced. Looking at this man and being able to call myself his wife – that’s pretty darned special. I really and truly appreciate what I have in him. We have our moments of conflict, but that doesn’t matter. Because we have each other.
At our wedding, we had well over 1000 photos taken. Out of all of those, there is one that stands out. It stands out because it is a perfect reflection of the joy we felt that day. The joy we feel now about being married to each other.
Sometimes, life gets in the way of important stuff, like running, or writing, or spending time with loves ones.
But sometimes, the important stuff wins.
