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Autism Diagnosis: Blessing, Curse, or Both?

January 12, 2012 By

Receiving my older son’s autism diagnosis four and a half years ago was both a blessing and a curse. On the one hand, this diagnosis meant that there was something wrong with my son. I had known this for a long time, of course, but having it told to me officially meant that I could no longer hide behind the cloak of denial. I had to face the fact that my child had a developmental disability that would, in all likelihood, affect him for the rest of his life.

On the other hand, though, having the diagnosis meant that we could now get our son the help that he needed. Instead of having a vague sense that there was “something wrong”, we had a name for his condition. We had something to Google, we learned what services to seek, and we entered the labyrinthine world of special needs funding. Although we were devastated, having the diagnosis did make us feel a little more empowered.

About two years later, I stumbled upon an Internet support group for parents of children with autism. This group was not designed to diagnose, or debate, or judge. It’s primary purpose was – indeed, is – to give parents a safe place to talk about the daily challenges of autism, to vent about whatever was bugging them, and to freely utter the phrase, “Autism is bullshit” without having someone jump down their throat.

This group has turned out to be an invaluable resource for me. I have made friends there. I have been able to give and receive advice. I have come to appreciate that in the autism world, there are children both better off and worse off than my son. I have been allowed to express hope and despair, I have been able to laugh and cry.

And I have been able to learn. Through the experiences of other people, I have been able to develop some strategies to help myself, my son and my family. I have come to have a better understanding of what role my younger (neurotypical) son can play in his brother’s life. I have realized that even the strongest of marriages can be strained by the presence of special needs, and I have learned some ways to deal with that. I have learned about how different things are in the United States vs. Canada where autism services are concerned.

I have learned about the difficulties some parents experience, first when it comes to getting a diagnosis for their children, and secondly, when it comes to getting and retaining services. And just this week, I have learned that all of this may be about to change under the new DSM-V diagnostic criteria. Whether it changes for the better or for the worse is an opinion still up for grabs.

Tomorrow: how will the autism diagnosis change, and what does it mean?

Filed Under: autism, Autism Diagnosis, Autism Friendships, Autism Services, Developmental Delay, Doctor, Learning Disability, Special Needs, Support Groups Tagged With: , , , , , ,
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Autistic Is Better Than Dead: Guest Post by Sara Morgan

January 3, 2012 By

Two years ago, my husband’s cousin lost his 20-year-old son to cancer. At the funeral, I kept myself together reasonably well until I saw the friends of the deceased enter the church. I remember thinking that this – the loss of a friend – is not something that any college student should have to deal with. And later, in the cemetery, I saw the bereaved mother standing there bravely, clutching the teddy-bear her son had had as a child. The overriding thought in my mind as I watched a mother and father burying their child was, “Thank God all my child has is autism.”

Today’s post, from Sara Morgan, expresses the same sentiment. Sara and I have two things in common: we are both autism parents, and we are both moms of angel babies who never got to live. In this heartfelt post, Sara reminds us that where there is life, there is hope.

As a mom of a child with Autism ( and one Highly suspected of having Aspergers, but that’s it’s own rant) I seem to get a lot pity, or compassion, or…I’m not always sure what to call it…. thrown at me.Like I’m some sort of saint for not thowing my child in the dumpster because of his Autism. I’m not brave, or special really in any sort of way except that I’ve come to the conclusion that Autistic is better than Dead.

When people see me walking on the street they see me and my 3 children,Faith, Alexia & Gabriel. What they do not see is the 3 I carry in my heart. Angel, Devan & Jeremiah….who would have been Gabriel’s twin. Pregnancy loss has long been a taboo subject, and I have fought hard to keep thier memories alive…how they died doesn’t matter near as much as that they once LIVED. That they will continue to live on in our hearts and our memories, that I will share them with thier siblings, even Gabriel with his autism and his limited understanding will know someone was in there with you….and he has a name, and a place in this family as do all his siblings.

Autism can really be it’s own depresing journey, it has it’s own grieving process, just as losing a child does…..It has the ups, the downs. The times you just want to throw yourself on the floor right along with your child and scream “WHY ME?” At the end of the day I can hold myself together because in the long run, he’s still HERE……I can do Autism…..Autism is Better than DEAD any day of the week….we can work with this! Autism will always be a debilitating condition,My son will always stuggle….but there is nothing more debilitating…more final…than the death of your child, anything else has possibilities.

I have Grown so much since I started these journeys, both as a bereaved mother, and as an autism mom. Don’t look at me with pity, Heck don’t even look at me with pride because I’m doing exactly what anyone in my position would do….I’m picking up the pieces and trying to put them back together and move on the best I can…and that my friends is all any of us can do.

(Photo credit: Sara Morgan)

Filed Under: autism, Children, Death, parenting, Pregnancy Loss, Sara Morgan Tagged With: , , , , , ,
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2011 – My Year In A Nutshell

December 27, 2011 By

January 2011

I start off the year on a good note. Tired and slightly hungover, I take part in the Resolution Run on New Years Day. With my wedding just four months away, I start to stress about the little details, like where to get married and where to hold the reception.

This month, I also donate blood for the first time  – at least, the first successful time. My inspiration is baby David, affectionately known as Captain Snuggles. Sadly, David dies just days later, at just 8 months old.

 

February 2011

We have a wedding venue and a minister! I will be getting married in the same church where both of my children were baptized into the Christian cult fellowship. My running has slowed down a little, because the stress of wedding planning has made me sick.

March 2011

We have a venue for our wedding reception! We almost booked the first place we looked at, but then we went to see the hall at the Royal Canadian Legion. They initially had the hall booked for our wedding day, but the other people have graciously agreed to move their event to the previous weekend. This means two things. First, we get to have our reception in a place that supports the veterans. And second, we now have all of the information we need to send out our wedding invitations.

This month is frantically busy. We have left most of our wedding planning to the last minute, so we have to book our DJ, our flowers, get a cake sorted, find someone to do my hair and makeup, and so much more.

April 2011

My wedding is on the last day of this month! Most things are organized, but my hairdresser and my makeup person have both bailed on me. While I dissolve into tears, my fiancé gets into the car and goes out for a drive. When he comes back, he tells me that the hair and makeup problem is all sorted out.

My soon-to-be brother-in-law introduces me to a wonderful lady, who agrees to be in charge of both of my boys for the day of the wedding. This is a very big deal for me. I worry about how my son with autism will cope with such a big day.

The big day arrives, and it goes perfectly! My hair and makeup look lovely, and the dress – made by my mother-in-law – is perfect. I marry the man I love, and everyone has a lovely time, including the kids.

May 2011

I spend time with my Mom, who has come for the wedding. We go shopping, we go for drives, we spend time with the kids, we chat and drink wine. It’s wonderful to have her with me.

One of the lowest lows of the year happens this month, with the unexpected death of our friend Ken, just days after our wedding. It is an honour to have had Ken and his wife at the wedding. It is good that we got to see him one last time. He will always be missed.

June 2011

My younger son James graduates from Kindergarten. I have a surreal kind of feeling as I watch my baby up there on stage, wearing his construction paper graduation cap, receiving his Kindergarten diploma. When he and his classmates start singing their songs, I just about die from the cuteness.

 

July 2011

I am having difficulty with my running. I struggle to find time, I am lacking motivation, and I am injured. I have missed the last two races I was registered for. On the plus side, the sporadic nature of my recent training does not appear to have affected my speed. There has not been any improvement in my performance, but there hasn’t been a noticeable decline either. This may not seem like a big deal, but when you’re struggling with something you usually love, you have to take what you can get.

August 2011

2011-08-25 11.19.19This month turns out to be unexpectedly busy. The big news is that my older son George graduates from his provincially funded autism intervention program. He has had two years of IBI followed by a year of the school stream program. His progress has been off the charts. He is ready for this graduation. I, on the other hand, am not. It represents a growing-up that I am just not ready for.

Things seem to be looking up with my running! I run two races this month, just a couple of weeks apart. My performance in the first isn’t great, but in the second, I do a lot better than expected.

September 2011

George turns 8, and I’m not really sure how this has happened. It seems like just yesterday that I held my tiny baby in my arms for the first time, and now he’s this long lanky boy who keeps growing out of his shoes.

My 2011 Run for Autism is three weeks away. I run a 10km race at the zoo and make a personal best time. The following morning, I go out for a long run in foul weather, and the day after that, I can barely walk. I feel good, though. I feel ready for the half-marathon.

October 2011

75738-1975-025f[1]The day has finally arrived: the race I have been training for all year. This is the reason I run – to raise funds for autism services, to make the world a better place for children and youth with autism and their families. I dedicate this race to my son George: my joy and my inspiration. If he can live every day with the challenges of autism, I can run a two-hour race.

It goes really, really well. I get a personal best time for the half-marathon and beat the 2:20:00 target that I’ve set for myself. What makes this day even more amazing is that I have done really well with my fundraising for this race, surpassing my combined total for the previous two years.

November 2011

I am insanely busy at work. I am on four projects, and I am also in charge of the month-end reporting for all of the projects in my department’s portfolio. I am enjoying the additional challenge that this gives me, and every month I am getting better at it.

I feel like I am starting to gain some traction in my writing. It is hard work, building up a blog following, and it’s an ongoing process. I am becoming quite prolific, though. I have my blog, I write for an ezine, I write for a project called World Moms Blog, that is growing very fast. I have been voted as one of the top 25 Canadian mom blogs, and people are starting to ask me to guest post for them. I have also resurrected the novel I started working on a couple of years ago.

I run another race at the end of the month, and demolish my previous personal best time. If I can do this after the difficult season I’ve had, what will I be capable of if I actually train? I ask my running friend Phaedra to be my coach for next year, and she agrees.

December 2011

As usual, my Christmas preparations are a last-minute frantic rush. Somehow, I get my shopping done on time and the day is a big success. We all weather the festive season with life and limb intact. It is a hard time for George, with all of the sounds and lights and people and busy-ness, but he gets through it.

On Christmas Day, James turns six. I feel a little weepy over the fact that my baby is no longer a baby. There is just something about the transition from 5 to 6.

Also on Christmas Day, I somehow manage to pinch a nerve in my back. It’s eerily reminiscent of 2 years ago, when the same thing happened. The incident in 2009 puts me out of action for two months, and I really hope this does not happen again.

The story continues in 2012. What script will I write for my life in the coming year?

Filed Under: 2011 Year In Reviw, autism, Children, Death, fundraising, IBI, life, Race, Running for Autism Tagged With: , , , , , , ,
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Campbell: A Story Of Kindness

December 15, 2011 By

Tazz and Campbell

Once upon a time, I had a child and called him George. I had all kinds of hopes and dreams for that child. We were going to  take him on the kinds of outings kids love, and for his birthdays, we’d invite his friends to come too. We would delight in watching him grow from babyhood to childhood as he ran and jumped and played with his peers; we would laugh at the funny things he said as he was learning to talk; he would make cookies with me and we’d go for picnics at the zoo. When he became a big brother he would take pride in helping with the baby.

One day, when George was almost four, the hopes and dreams crumbled as a doctor gave me the news that George had autism. As I sat there in shock (strange really, since I’d known for a year that something was wrong) I did not yet know that at some point in the future, I would come to accept a new kind of “normal”, that my hopes and dreams would take on a different, but still meaningful form, and that while the journey would take us on the scenic route, we would still see many wonderful things along the way.

It hasn’t all been a cakewalk. There have been hard times. I have had to learn how to restrain my son with my bodyweight to stop him from hurting himself. Speech is still sporadic enough that we celebrate every single word, every single sentence. It saddens us that George does not have friends, preferring to play by himself.

One of the hardest things to deal with has been the reactions of other people. We get rude stares in grocery stores, and complete strangers tell us that what our child needs is “a good hiding”. When people see George having difficulty in a public place, they jump to the immediate conclusion that he is misbehaving. Don’t get me wrong – sometimes he is. He may have autism, but let’s face it – an eight-year-old boy is an eight-year-old boy. Most times, though, George is having trouble with the brightness of the florescent lighting, or the overabundance of sounds, or all of the conversations going on around him that he does not know how to filter.

I sometimes wish for a magical potion, a Perfume of Arabia that I could sprinkle onto people to open their eyes and help them understand.

In the absence of a Perfume of Arabia, the best I can do is write about my experiences and hope that it will make a difference to someone’s life. Like it did to a reader, Tazz, who along with her dog Campbell, had an incredible encounter with a special needs child. With Tazz’s permission, I am sharing the story here. I’m not even going to bother rewording it. Tazz’s words can speak very well for themselves.

“One thing I learned is to never ever judge what I see a child doing, because for all I know there may be a problem I do not know about. Turns out this info came in very handy for me not long ago. There is a family who are members of the church I am currently attending part time. Their son has some kind of a problem that they have not quite diagnosed yet. However, it causes him to sometimes have horrible meltdowns. I was walking down the hall one day during Sunday School time going back to class from the bathroom when from a room down the hall a ways I heard the most heartbreaking crying I ever heard, and knew it was this little boy having another hard time. His mother was doing all she could to calm the child. I followed my heart and took a chance. I softly knocked on the door, and asked if I could help. She had come to the door with the melting down child in her arms, and when he saw Campbell his screaming stopped. I mean like turning off a switch. I asked if I could bring Campbell in and visit for a minute. She agreed and we all sat on the floor with the little boy calming down and petting Campbell. They are now looking in to the possibility of getting a therapy dog for this child. Campbell has come to rescue this child a couple more times since that day. Because now if we are there, and this child starts to have a problem they come and get me from where ever I am and I happily go and help. Well, Campbell helps.”

Is this not the most amazing story? Tazz had an instinct and she followed it. She and her dog were exactly what that little boy and his Mom needed. We special needs parents all need people like this – people who don’t necessarily know the circumstances, but who open their hearts to people who really need it.

To Tazz and all of the people like her, thank you. Thank you for being there. Thank you for being you. You restore my faith in the goodness of human nature.

This week’s Indie Ink Challenge came from Head Ant, who gave me this prompt: What would your proverbial “perfumes of Arabia” take care of? Fiction or non-fiction.
I challenged lisa with the prompt: Write about anything you like, but include the following: cotton candy, a dog, and a broken-down taxi.

Photo credit to Tazz. This picture was taken at an event to remember the victims of domestic violence.

Filed Under: autism, Dogs, Empathy, Helping, Indie Ink Writing Challenge, Special Moment, Special Needs Tagged With: , , , , , , , ,
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Princess

December 12, 2011 By

On Saturday night, me and my husband went to the annual Christmas gala put on by my employers. While I always get excited about the prospect of going out for a meal at a place that does not supply paper menus and crayons, there is always a bit of angst involved in the preparation.

For a start, we have to arrange childcare and hope that the almost-six-year-old drama queen won’t have a hissy fit when he discovers that we’re going out without him. When we fail to find childcare because it’s the Christmas season and apparently, baby-sitters have lives too, we have to hope that the kids won’t tie their elderly grandmother and great-aunt to a pole and dance around them waving sticks and chanting ominously.

Once the kids are sorted out, we move on to the more difficult question, one that has plagued women all over the world since the very beginning of time.

What do I wear?

Where shopping is concerned, my philosophy is this: Why put off until tomorrow what you can do the following day? In that vein, I went shopping for my dress at lunchtime on Friday, one day before the event. And yes, I had to get a new dress. No, I couldn’t wear something already in my wardrobe. My clothing size has changed so many times over the years, in both directions, that I don’t actually have anything that fits. So, off the store I went, fully expecting that as usual, I would have to settle for something I didn’t really like. The perils of being a habitual last-minute shopper. Someday I’ll learn. Maybe. Probably not.

Anyway, the shopping expedition went a lot better than expected. As soon as I walked into the store, I saw a chocolate brown creation that looked very nice. I never thought chocolate brown was really my colour, but some intuition told me to give it a try. By some miracle, they actually had the dress in my size. I picked out a couple of other dresses to try on just in case the chocolate brown one didn’t work out, and I retreated into the change room. I briefly wavered between the chocolate brown dress and a red one, but in the end I went for my initial instinct. Apart from the fact that the brown looked better, I already had shoes that would go with it. I wasn’t wild about the idea of dropping over a hundred bucks on a pair of shoes that would shred my feet by the time dessert was being served.

Fast forward to Saturday afternoon, when we were getting ready to go. My makeup was applied and my hair was as done as it was ever going to be. The husband was off putting on his glad rags, and all I had to do was put the dress on. As I slipped it over my head, my eight-year-old son – so sweet and innocent in his autism – wandered in. He tentatively touched the shiny fabric and smiled. And then – to my astonishment – he started helping me accessorize. He grabbed my shoes and helped me put them on. He dug around in my dresser and came up with the necklace I wore with my wedding dress. He handed it to me and said, “Put the necklace on, Mommy.” It wasn’t the necklace I had been planning on wearing, but when your mostly non-verbal autistic child gives you a full, appropriate-to-the-circumstances sentence, you don’t sneeze at it. I put the necklace on, and would you believe it, the kid was right! The necklace looked way better than what I had been planning on.

My little fashion diva stepped back to survey his handiwork. He gazed at me and said a single word: Princess.

We had a great night. The food was good, we had very nice people at our table, we danced and partied and had fun. The dress was a hit, and my some miracle, it was even comfortable. There are many moments of the evening that I smile about as I relive them. Walking into the ballroom hand-in-hand with my husband. The many laughs we shared with the people at our table. The outstanding wine and the food that was so pretty I almost didn’t want to eat it.

But in the end, there is one memory of the evening that I hold close to my heart, that warms me from the inside every time I think about it.

My beautiful son, looking at me with those big blue eyes, calling me a princess.

At moments like that, my cup overfloweth.

Filed Under: autism, Clothes, dress shopping, Gala dinner, Occasion, Princess Tagged With: , , , , , , , ,
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Twitter Tuesday: #youmightbeanautismparentif

November 22, 2011 By

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.

Filed Under: autism, Humour, life, Twitter Tagged With: , , , , , ,
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Santa Pictures And The Autism Family: 10 Ways To Not Go Completely Insane

November 14, 2011 By
  1. 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!”
  2. 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.
  3. 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.
  4. Try not to think of the fact that sometimes, ninety seconds feels more like ninety years.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
Filed Under: autism, Children, Christmas, Coping Skills, family, life, Santa Claus Tagged With: , , , , , , , , , ,
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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)

Filed Under: autism, Brothers, Children, Fairness, family, parenting Tagged With: , , , , , , , ,
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How To Get Rid Of Telemarketers

November 7, 2011 By

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.

Filed Under: autism, Humour, Telemarketers Tagged With: , , , , , ,
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Embracing Autism

November 1, 2011 By

If there was a cure for autism, would you use it for your child?

This question was posed to me recently by a non-autism parent, and it really made me think. Before I was an autism mom – indeed, before I was any kind of mom – my immediate instinct would have been to say “Yes! Absolutely! What kind of parent would choose for their child to have a disability?”

Now that I can speak with the voice of experience, my answer to that question is very different. There are some aspects of autism that I would get rid of in a heartbeat. When my son, now eight, has his meltdowns, the expression of anguish in his eyes breaks my heart. If I could wave a magic wand, I would give him the ability to communicate the pain that he feels during those outbursts. I would make the changes of seasons easier for him, I would make Christmas less overwhelming, and I would give him the skills to play with his little brother.

On the other hand, there are things that I would not change in a million years. Someone once told me that my son is very smart “in spite of his autism.” I gently corrected this person by telling her that my son is very smart because of his autism. His mind works in a very unique way. Thanks to his out-of-the-box thinking, this kid can problem-solve rings around the rest of us. He can do multiplication in his head, and this is something that no-one has ever taught him. He just figured it out himself. He sees patterns that are lost on everyone around him: once, when he was putting coloured pegs into a board, I literally had to squint at the board from a number of angles before the pattern he was creating suddenly jumped out at me. If he was given a cure for autism, that incredible way of thinking would disappear.

In the eyes of society, my son has a disability. The education system regards him as having special needs, autism is classified by the medical community as a disability, and the government has granted us a disability tax credit for him. And rightly so: my son definitely needs special accommodations. There is no way he can function in a neurotypical world without assistance. Although I believe he will be capable of great things as an adult, I see the possibility of him being unable to live completely independently. But as much as there are things that he cannot do as well as other people, there are things that he does better. He may frequently take the scenic route from a problem to the solution, but his route can cover a lot more ground, solve problems that no-one else even knew existed, and frankly, the scenic route often has a better view than the highway.

When this amazing boy with his sweet, sweet disposition curls up on the couch with me, wraps his little arms around me, and allows me the privilege of being in his world with him, I feel a love for him that is too big to put into words.

Would I ever want my son to be “cured” of autism? No. Because the challenges just make us stronger, and his autism is a part of the beautiful person he is.

Filed Under: Acceptance, autism, Challenges, Intelligence, life, Love, parenting Tagged With: , , , , , , ,
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