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Book Review: My Brother Sammy Is Special

April 7, 2012 By

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 7 – Health Activist Choice: Today, I get to write about anything I like. I decided to take the opportunity to review a book that should really be on the bookshelf of every child who has a brother or sister with autism.

I tend to feel a lot of angst when it comes to parenting my younger son, James. James, who is six going on thirty-two, is the neurotypical child in my family. He is the one without autism, the one who is very socially engaging and never stops talking, even when he’s asleep.

James himself does not make parenting difficult. He is as well-behaved as a boisterous six-year-old boy can be, he is making good progress at school, and he gets along famously with his big brother George when they’re not throwing Lego at each other.

What makes it hard is the fact that due to George’s autism, I have to use completely different parenting styles with my kids. What I do makes perfect sense to me, but it can be hard for a six-year-old to grasp why he is being treated differently to his brother. Although my husband and I try our best to explain things to James, a lot happens that James perceives to be unfair.

And so when I got the opportunity to review a book written specifically for the siblings of children with autism, I wasn’t going to pass it up. Written by Becky Edwards and illustrated by David Armitage, My Brother Sammy Is Special tells the story of a boy who is angry about his brother being different. He doesn’t want a brother who is different. He wants a brother who can talk to him and play with him, and who doesn’t wreck his stuff.

In a beautiful twist, Sammy’s brother has a revelation, and instead of trying to force Sammy out into his world, he ventures into Sammy’s world. And so Sammy’s brother achieves the brotherly bonding that he so desperately craves, but not in the way that he had expected.

Having read the book myself, it was time to test it out on a member of the target audience. I snuggled up with James, opened the book, and started reading. The story, with its flowing narration and beautiful illustrations, engaged James’ attention throughout. He was very concerned about where this brotherly relationship would go, and he was visibly relieved that it all worked out in the end.

My Brother Sammy Is Special is written in language that is simple enough for young children to understand, yet descriptive enough to convey the complexity of the special needs sibling relationship. Although the blurb in the dust jacket says that the story is about a boy with autism, the story itself makes no specific mention of the condition. This makes it flexible enough to be effectively used within many kinds of special needs families.

The book is a great launch-pad for discussion. It flows in such a way that parents and their children can pause to ask questions and talk about aspects of the story without losing the flow. For children who may be bewildered by the special needs of their siblings, the story can serve to provide both comfort and understanding. It also describes practical ways in which a typically developing child can try engage with his or her special needs sibling.

I highly recommend this book for any family that has a mix of special needs children and typically developing children. It is a gem – a treat for parents and children alike.

My Brother Sammy Is Special is available for purchase at Amazon.

Many thanks to Skyhorse Publishing for allowing me to review the book, and for providing the cover image.

Filed Under: autism, Brothers, Health Activist Writers Month Challenge, Siblings, Special Needs, WEGO Health Tagged With: , , , , , , , ,
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Butterfly

April 5, 2012 By

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 5 – Ekphrasis Post: Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus?

When my son was first diagnosed with autism, we enrolled him in a local daycare centre on the advice of his speech therapist. He needed the social aspect of it, she said. He needed the group lunchtimes, the circle times, and all of the other elements of being part of a group of children. We were nervous about letting our sensitive, vulnerable son out of our immediate orbit, particularly since the daycare had never had a child with autism before.

To their eternal credit and our eternal gratitude, the daycare welcomed George with open arms. The director of the centre arranged for all of her staff to be trained in how to work with special needs kids, and George was very happy there.

During the summer months, the kids would be taken to play outside at the end of the day while they were waiting for their parents to pick them up. I would get off the bus from work, pick up my boy, and walk home with him. One day, I picked up his backpack from the darkened daycare classroom as usual, and went out to the playground. I always tried to arrive undetected so I could watch George at play for a few minutes. In typical autistic fashion, he always did his own thing. He played among the other kids, but not with them.

On this particular day, I got to the playground just in time to see a few of the other kids preparing to have a race from one tree to another. George stood apart from the kids, watching them shyly. When the daycare teacher said, “GO!” the kids scampered away from the start line while George stood by on his own.

My heart constricted with unbearable sadness. The whole thing seemed to underscore the isolation of autism, and I felt a sense of unjustness that my child was standing there on his own. With his lanky frame and long legs, he is a natural runner. He might have won that impromptu little race.

Damn autism, I thought. I knew these other kids well enough to know that prior to lining up for the race, they would have tried to encourage George to participate. But being locked in his own world, he would not have known how to. Outwardly, he seemed perfectly happy, but I couldn’t help wondering about that. What was going through his mind as he watched those other kids at play together? Did he feel any sense of isolation? Did he wish he knew how to join in?

I started thinking about sports teams and group activities. Was George ever going to be able to be part of a soccer team or a high school band? Would he travel in a pack of teenage friends or would he sit by himself in the high school cafeteria? Would he be excluded from birthday parties? Or would some group of well-meaning kids include him in their group and look out for him?

How was my child, with his autism and his social communication deficits, going to survive in a social world?

This is a concern that is with me more or less all the time, despite assurances from his teacher that he is starting to tentatively reach out socially at school, that he is getting better and better at participating in social activities, and that he is, in fact, an extremely well-liked member of the student body.

A few days ago I saw something that made my heart soar. Me and my husband were out for a walk with the kids, and we saw the teenage boys down the road shooting hoops in their driveway. Before we could stop him, George ran up to the boys and held out his hands for the ball. The boys good-naturedly obliged, and like a true natural basketball player, George bounced the ball on his knee and then threw it towards the hoop as if he did this every day.

The hoop was too high for George to have any success, and the boys offered to lower it for him. We told them not to worry and we went on our way, but not before the boys had invited George to play basketball with them any time he wanted.

When things like this happen, my vision of the future shifts, as if I’m looking at my son’s life through a kaleidoscope. I start to see possibilities that were previously hidden to me, possibilities that simply may not have been there before George grew and developed into them. Instead of seeing the kid who stood on his own while everyone else had a race, I now see the boy who, just for a few moments, joined other boys in a basketball game.

If I had, just a year ago, seen the picture that inspired this post, I would have thought, “George is probably never going to do that. He’s probably never going to romp around with friends or be invited to take part in impromptu soccer games.”

Now I look at that picture and realize that I am seeing the emergence of George as a social being. Maybe he’ll always be shy, and it is very likely that he will always need to be surrounded by people who will look out for him.

But his personality, his character, the very essence of who he is – that is emerging bright and beautiful, like a butterfly coming out of a cocoon.

Filed Under: Acceptance, autism, Childhood, Friendship, Health Activist Writers Month Challenge, Possibilities, Social Development, WEGO Health Tagged With: , , , , , , , ,
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My Husband Doesn’t Believe Me

March 12, 2012 By

Being a mom is very hard work, especially when you add autism into the mix. While it is more rewarding than anything else in the world, it is also exhausting and overwhelming. At times we special needs moms feel isolated from “real” life, misunderstood by friends and family members, and under-appreciated by our spouses.

Very often, it seems as if we have to carry the full load by ourselves. We are the ones who make sure the laundry is done and the dishwasher is packed. We supervise homework and get the kids to bed at a reasonable hour – at least, we try to. When a child has a sensory-induced meltdown, we are there to catch the fall-out. Many of us also have jobs that involve lengthy commutes, and most of us will sometimes pretend we need to use the bathroom just to get a couple of minutes to ourselves.

I would venture to say that at some point in time, all special needs moms – and possibly all moms in general – feel as if our husbands just don’t get it. They don’t understand how hard it is for us or how overwhelmed we feel. They get confused when we say we are lonely, because they don’t realize that our lack of a circle of friends is not a matter of choice. And sometimes, they are absolutely baffled by the resentment we express when we work ourselves to the bone until late every night while they sit on the couch watching TV.

I am generalizing, of course. There are plenty of men who are not lazy, self-centred and disinterested, just as there are plenty of women who are. Most dads do step up to do the parenting thing, and they do it well. They at least try to be supportive of their partners, even if they don’t always “get” it. I know some of these men. Hell, I’m married to one of them. Even on days when things are less than perfect – you know, those days when I complain about how hard my life is – I am grateful to have a husband who loves and supports me and is Dad to his kids in the ways that really matter. In fact, my husband doesn’t believe me when I tell him about things that some other dads either do or fail to do.

I belong to an Internet support group for parents of children with autism. The vast majority of members are moms, but there is a sprinkling of dads. A thread that’s going on in the group now makes me reflect on how lucky I really am.

You see, parenting a child with autism goes beyond the usual tasks of providing nutritious meals and ensuring that clothes are clean. You have to do things that you wouldn’t have to do for typical children, like teaching basic living skills that other kids naturally pick up from environmental cues. For example, I’ve never had to teach the toothbrushing routine to my younger son, who does not have autism. But for my older son, who does have autism, I have visuals set up and I have to give him verbal prompts throughout. And still, he requires a certain amount of hand-on-hand assistance for this task.

Where boys are concerned, there are certain life skills that it’s far easier for Dad to teach than Mom. Shaving facial hair being one. Aiming properly while peeing standing up being another. Women don’t have the need for one or the equipment for the other.

One of the dads in my Internet group posted a message several days ago offering tips for teaching a boy how not to pee all over the bathroom. Some of the advice was based on the notion of the boy’s father teaching by example. A mom in the group responded to the message by saying that her husband refused to teach their son this particular skill. Her response generated a number of other messages from moms in a similar boat.

Seriously? A father cannot take the time or trouble to teach his son such a fundamental skill? Yes, teaching stuff relating to bodily functions can be less than pleasant, and yes, this kind of thing does come with a certain lack of privacy. But these are our kids, and if we don’t teach them this stuff, who will?

I’m not saying that the dads I am referring to are bad fathers. You don’t have to teach your son how to pee properly in order to be a good dad. I’m just suggesting that it is perhaps a short-sighted approach, and that sometimes we just have to put the needs of our kids over and above our own sense of discomfort. The discomfort is temporary, while the skill learned will last forever.

There are times, of course, when male input is not available. Single moms, or those whose husbands are too incapacitated to help out, make a plan to teach their kids whatever skills are needed.

But dads, if you are present and physically able, please help teach your sons the stuff that dads can teach best. You will give your boys essential skills that will stand them in good stead for the rest of your lives, and the mothers of your children will be that much less frazzled and stressed. Who knows? It could even lead to you and your partner having more quality time to spend together.

And in a world that is high on pressure and low on time, that can only be a good thing.

Filed Under: autism, dad, parenting, Special Needs 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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Autism Meltdown: Surviving The Storm

August 24, 2011 By

It all started when I turned on the light in the kitchen. My almost-eight-year-old son George sidled up to me and, as usual, said, “Turn off the light soon.”

George hates the overhead light in the kitchen, and whenever it is turned on, he glues himself to my side and repeatedly tells me to turn it off, like a stuck record. I am so used to this that I barely notice it anymore. I just carry on with whatever I need to do, which last night included unpacking and reloading the dishwasher.

Uh oh. The dishwasher. This is another source of extreme discomfort for George. He gets very anxious when it is open, and like a record stuck on a different track, he tells me over and over again to “put it back soon”.

This – the combination of the light and the dishwasher – was a precursor to the explosion that would happen later in the evening.

I was probably not helping, at least, not at that point. I was in an agitated state of mind, having just come home from a stressful workday. I was multitasking too much, juggling about six tasks simultaneously, and getting stressed because neither of the kids would eat their dinner. I was frazzled and fraught. There is no other way to put it.

The explosion gradually built up throughout the evening, and finally erupted when George turned on the kitchen tap and found the water hotter than he expected. He screamed in outrage and started running around in a panic. I caught him, and using an expertise borne of experience, I used my body to restrain him from thrashing around and hurting himself.

I determined that he was not burned or injured, and sat there wrapped around him while he screamed. And screamed and screamed.

It has been a while since George had a meltdown this bad, but I knew that there was not a thing I could do to diffuse it. This was going to last for as long as it lasted, and we were just going to have to ride it out. Fortunately, my husband was home, so I had someone to tag-team with. One of us would stay with George, while the other would comfort our younger son James, for whom these meltdowns can be mysterious and frightening. Every thirty minutes or so, we would switch kids. Anything else that either of us had planned for the evening was abandoned.

After two hours or so, George finally started winding down. My husband and I cautiously allowed ourselves to breathe. He went back to the work he had been doing on his computer, and I went into the kitchen and made a cup of tea. I got the kids into their pajamas and gave them their bedtime milk. Because they were both still unsettled, I allowed them to chill out on the couch for a while before going to bed.

The period of relative calm turned out to be the eye of the storm.

The dishwasher had been running in the background without anyone paying attention to it. George, with his super-sensitive ears, heard the quiet click that heralds the end of the dishwasher’s cycle, and just like that, he was off again. For another hour, this poor child was experiencing an emotional storm that I felt ill-equipped to help him weather.

The worst part of all this was not the screaming. It was not the panicked running around and frantic scrabbling with the dishwasher. The worst thing by far was the look in George’s eyes. He kept looking directly at me, trying desperately to communicate – something. If the eyes are indeed the window to the soul, then my son’s soul was frustrated, unspeakably sad, desperate – almost tortured. It broke my heart to see him that way, to see him in such obvious pain and to be unable to help him.

Much later, when everything was finally quiet and when the entire household (sans me) was asleep, the question of why kept running through my mind. What happened to trigger the worst meltdown we’ve seen in about a year? Could the light and the dishwasher have suddenly morphed from a source of anxiety to a source of full-on panic? Was the hot water just too much for him to handle? If I had not been stressed and agitated, would the situation have escalated to such an extreme degree? In an interesting theory offered by my mother – one that resonates with me – could yesterday’s earthquake have unsettled George and made him more susceptible to stress?

As with most things autism-related, there are no definitive answers. Every question just spawns more questions. All I can really do is go with my instincts and strive to be the best mom I can be.

(Photo credit: http://www.flickr.com/photos/powazny/3782692376/. This picture has a creative commons attribution license.)

Filed Under: anxiety, autism, Meltdown, parenting, Special Needs Tagged With: , , , , , , ,
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Why Autism?

July 19, 2011 By

“Why do you think he has autism?”

This question is posed to me quite a lot by friends and strangers alike, people who for the most part intend no malice, but are genuinely curious about the origins of George’s autism.

That they are asking the question at all is something that I see as a positive sign. It tells me that increasingly, people are wanting to be educated about autism instead of blindly believing every tidbit of information – right or wrong – that is thrown their way.

Over the years, I have done research on a variety of theories.

Was it vaccines? No, I don’t believe it was. Deep down, I knew from the time George was a tiny baby that he was not on the trajectory of “typical” development. I don’t buy into the dietary theory either, for the same reason. George was exclusively breast-fed for four months, and by then I was seeing some little signs that something was not quite right.

No, whatever happened within George’s brain to result in his autism, it was a done deal by the time he came out of the womb.

Even with that knowledge, the title of Primary Cause is wide open. I have read a couple of recent studies suggesting that environmental factors in utero could have more of an effect than previously believed. As if moms of children with autism didn’t have enough guilt on their shoulders already. But that is neither here nor there.

When I was expecting George, I did everything that was considered by pregnancy gurus to be “right”. I ate lots of leafy greens and took my prenatal vitamins every day. I ate lean protein and avoided foods with a high fat content. Accustomed to eggs “over easy”, I ensured that my eggs were fully cooked, and I did not touch deli meat or anything else that could be a potential listeria risk. I did not touch a drop of alcohol, I stayed away from places where I might be exposed to second-hand smoke, and my body pretty much bullied me (through the magic of the laughably known “morning sickness”) into kicking caffeine to the kerb. I went to all of my OB/GYN appointments and followed the advice of my doctor. I did not take so much as a headache pill through my entire pregnancy. The only tablets going into my mouth were vitamins and Tums.

I don’t think I could have created a better environment for my baby if you had paid me a million bucks. Of course, there is the possibility that fifty years from now, someone will prove that some obscure enzyme in, say, oranges, has been linked to autism. But I think it is safe to say that the prenatal environment is an unlikely candidate for the cause of George’s autism.

Leaving aside other environmental factors like air pollution, there are two other possibilities: genetics, or the circumstances surrounding the birth itself. Or maybe a combination of the two.

When I was a child, I was developmentally delayed. I didn’t talk until I was five, and I had some motor skill delays. My body was physically capable of doing anything my peers could do, but the communication between my brain and my muscles was out of synch. It was clear – especially in the early years – that I had some kind of learning disability, although I was never formally diagnosed with anything. As I navigated my way through childhood and adolescence, I was able to compensate for my learning difficulties by simply thinking in a different way and leveraging areas that I was strong in. But as my academic performance got better and better, my social awkwardness and anxiety among people became more and more apparent.

To this day, I suffer from social anxiety, although in general, I have found ways to adapt and mask it so that people don’t really notice. I’m not so much a stickler for routine, but once plans are made I get very uncomfortable – almost panicky and kind of, well, spectrummy – if they are changed. Although I am now fully verbal – sometimes, downright talkative – there are times, usually when I’m stressed – when I lose the ability to communicate through speech. It’s as if the words get lost somewhere between my brain and my mouth.

Am I on the autism spectrum? I don’t know. I have never been for screening, and frankly, I don’t really see the point. But if I were to learn that I have Aspergers, I would not a bit surprised. When I look at the way George has evolved through his early childhood, and the way he is at this point in his life, I do see a lot of parallels with my own early years. So, genetics? It’s a strong possibility.

The other possibility is that something happened to George’s brain while he was being born. For the most part, my labour was pretty standard. Everything happened more or less when the Medicals said it would. When I was in the thick of contractions, I heard someone use the word “textbook”. When the time came to push, though, the going suddenly got a lot tougher. Even though the baby was perfectly positioned for birth, no matter how hard I pushed, nothing budged. The Medicals kept telling me to push harder, push harder, but I just couldn’t do it. After what felt like an eternity but was probably only a couple of minutes, the Medicals gave me an episiotomy (if you don’t know what that is, look it up, because I ain’t describing it here). Once that was done, I gave one more almighty push, and an eternal second later, I was rewarded by the sound of a baby crying.

Here’s the thing, though. While I was pushing to no avail, the baby’s heartbeat – usually in a range of 130-150 beats per minute – dipped to below 40 beats per minute. Only for a couple of seconds, mind. Like a momentary blip in the radar. But could those couple of seconds have been enough to alter the wiring in my baby’s brain?

In the end, I suppose it doesn’t really matter. George has autism, and knowing the cause with crystal clarity would not change that.

No matter what the cause, George has autism, and I love every inch of him for who he is.

(Photo credit: http://www.flickr.com/photos/macbeck/4146730230/)

Filed Under: Aspergers Syndrome, autism, Autism Spectrum, Causes of Autism, Childhood, Developmental Delay, Environment, Genetics, Learning Disability, Social Anxiety, Speech Delay, Vaccines Tagged With: , , , , , , , , , , , , , ,
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Lucky Number Six

July 12, 2011 By

Being a parent is hard. You have to deal with conflicts, challenges, lack of sleep, lack of privacy, loss of self-identity, turmoil, guilt, worry, heartache, tears, and the reality of never being able to eat a full meal without interruption. And that’s just with a regular kid.

When you add autism into the mix, you also add the sensory challenges, meltdowns, communication issues, various other autism-related challenges, guilt piled on you by the media and other parents because you chose to vaccinate your child, and uncomfortable stares and rude comments from strangers in grocery stores.

All parents need a break sometimes. Especially parents of children with autism or other special needs. We love our kids, and recognize that in order to be better for them, we need to take care of ourselves.

This is why God created respite workers, and for some lucky parents, the funding to pay for them.

Our respite worker adventures are in their fourth year. In that time, we have gone through five workers, and we have just started on our sixth.

Our first worker was fantastic. We found her at the daycare George went to. She was his favourite teacher there. And so, when she left the daycare and asked us if we would like her to do respite work with George, we jumped at it. Both of the kids loved her, and George eagerly anticipated his times with her. After two years with us, she called me with the news that she had suffered a relapse of breast cancer and needed to take time out to focus on her health. We were sad to see her go, but we completely understood.

After a search of about three months, we found a new respite worker. George took to her right away. She was organized but creative, firm but kindly. She engaged George in a very positive way. She was a lovely, lovely person, and we could tell that she had a gift for working with special needs children. Unfortunately for us, one of the therapy centres recognized the same gift in her, and hired her full-time as an instructor/therapist. She gave us plenty of notice, so that we could find a replacement before she left.

Respite worker #3 was easy enough to find. On paper she looked great. Lots of experience with special needs kids, working towards an early childhood education qualification, and sister to someone with autism. We thought this woman had it all, right down to the personal experience with her own brother.

She turned out to be spiteful and vindictive. She lasted for precisely two sessions, one of which had been a handover session with Respite worker #2.

On to Respite worker #4. We found her through an ad we placed in a local newspaper. She came for an interview, and seemed to interact well with George. We liked her, we hired her, and she agreed to start the following week. Unbeknownst to us, though, she had been actively seeking full-time employment and got offered a job a couple of days before she was due to start with us.

At this point, I was ready to throw up my hands in despair. Good respite workers – the ones who are good at what they do, are nice people, and stick around for longer than it takes to make a cup of coffee – are like gold dust.

I placed another ad, and got a number of responses. We settled on a very nice, down-to-earth lady. When she came for the interview, she produced a binder containing her resume, police clearance, references, and various CPR and First Aid certificates. The details that impressed me on her resume were that she had been with one of her respite families for about ten years, and the other one for even longer. This woman had a history of staying with her families, and she even spoke about the benefits of building a long-term relationship with the child. We liked her, we hired her. She started the following week.

And then, as fate would have it, a close family member of hers was seriously injured in an accident, and another close family member had a heart attack and needed bypass surgery. Our new respite worker had to temporarily suspend work so she could take care of her family. After a break of a month or so, she came back, but that only lasted for two weeks. One of her family members relapsed, and she had to take time off again. She stopped replying to my texts and returning calls, and as nice and all as she was, I had to make the decision to cut her loose.

And now, as of yesterday, we have started with Respite worker #6. I am hesitant to make any sweeping statements at this point, but she seems to have been dropped into our laps by the smiling gods of fate. She has been a student volunteer in George’s classroom for the last two years. She knows him, and she seems to like him. He seems to like her.

I am really hoping she will be our Lucky Number Six.

Filed Under: autism, parenting, Uncategorized Tagged With: , , , , , , , ,
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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.

Filed Under: Accomplishments, autism, Children, family, life, Milestones, parenting, Special Moment Tagged With: , , , , , , , , , , , , , , , , , ,
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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.

Filed Under: Accomplishments, autism, Children, family, life, Milestones, parenting, Special Moment Tagged With: , , , , , , , , , , , , , , , , , ,
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Hat Boy

February 22, 2011 By

Me and my Hat Boy

George has a thing about hats. He wears them all the time, even when he goes to bed. We have succeeded in getting him to take it off at bathtime, and both the school and the therapy centre have him remove it for his periods of instruction. But when he is at home, the hat is always on his head.

It’s not just any old hat, either. George is very picky about his hats – he will only wear his hat, and if his hat is not available, things in my household get very noisy and fraught as we struggle to keep him from banging his head in frustration. From time to time we have to switch out the old hat for a new one, because – well, you know – George is seven, and seven-year-olds have this habit of growing really fast.

The “new hat days” are traumatic for the entire family, so we tend to hold on to the current hat until the seams start to pop.

However, with age comes wisdom, and we have learned that whenever it’s time for a new hat, we have to get two that are the same. That way, when one starts smelling a bit ripe, we can throw it into the washing machine and let George wear the other one.

We suspect that George wears the hat to gain that slight feeling of pressure around his head. Kids with autism are frequently big on physical pressure, and George definitely falls into that category. He climbs onto the back of the couch and jumps from there onto the floor, because he craves the deep pressure input to his feet and legs. It would make sense for him to want pressure around his head as well.

In addition, though, I think George wears the hat in order to protect his head from being touched. He really, really, REALLY does not like people touching his head. He allows me to remove his hat and stroke his head, or run my fingers through his hair, but after just a few seconds he gets antsy and squirms away.

This is a problem.

For a start, there’s the practical problem of hair-washing. I don’t wash George’s hair as often as I should, because it is just so stressful for him. Hair-washing is a joint effort between me and Gerard, and it has to be planned with military precision, right down to getting my mother-in-law to whisk James away for the duration. Basically, what happens is that I wait until George isn’t watching, and then I fill a plastic basin with water and lay a shower curtain on the kitchen floor. Then Gerard uses his arms and legs to immobilize a screaming George, and I wash his hair as quickly as humanly possible.

It sounds barbaric, and I always feel so bad that I end up in floods of tears, but it is the only way we can wash his hair.

When people hear of the difficulties, they say to me, “Just keep his hair short”. If only it were that simple. This kid won’t let us wash his hair normally – why would anyone assume that he will let us anywhere near him with a pair of scissors or any other haircutting device?

Cutting his hair is as traumatic as washing it. So what I have to do is creep around my own house in the dark like a burglar, gingerly remove George’ s hat from his head, and then tentatively cut whatever bits of it that I can reach while he is sleeping. Sometimes it takes up to two weeks to complete a haircut because George tends to lie down the same way every night.

We may be making progress, though, thanks to the wonderful folks at the therapy centre that George spends four mornings a week at.

The therapists had me complete a sensitivity questionaire, describing the issues with washing and cutting his hair, and two weeks ago they started a desensitization program. This morning George’s therapy supervisor called me to give me an update.

“We combed his hair,” she said.

“What, ALL of it?” I asked, incredulously. Usually my hair-combing attempts have to be aborted, so each day I start on a different side of his head, just to ensure full coverage every two days.

“All of it,” said the supervisor. She went on to tell me that she had put ear-muffs on George, and that this seemed to help with the sensitivity around his ears.

“He kept on ear-muffs?” I asked. Not sounding very intelligent at this point. Think Village Idiot.

“AND,” continued the supervisor, “We have sprayed his entire head with leave-in conditioner.”

Holy bat, Crapman! Who is this short person and what has he done with my son?

So, it would appear that the desensitization program is working like a charm. It will still be a long time before we can actually wash his hair normally, or cut it while he is awake, but with baby-steps, we will get there.

The staff at the therapy centre are absolutely incredible. Thanks to them, George will be ready for discharge into full-time school (with special ed support) by September.

He might be ready.

Me, not so much.

Filed Under: autism, Hair, Sensory Issues Tagged With: , , , , , , , , , ,
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