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Book Review: Beyond Rain Man by Anne K. Ross

August 23, 2016 By

beyond rain man

When my son was first diagnosed with autism nine years ago, I went to my local bookstore in search of help. I was looking for books that would tell me how to deal with the sensory eating issues, the grocery store meltdowns, the head banging incidents that left dozens of holes in our drywall. I wanted to know how to get my son to talk, to make friends, to play with toys instead of spending hours staring at a piece of string.

What I didn’t realize at the time was that I didn’t need an instructional manual. I needed to know that I was not alone, that there were people out there who knew what I was going through as the parent of a child with autism, and above all, that my family and I would survive. We would figure out all of those things that I was so desperately looking for, and we would, in time, adjust to our new version of reality.

While I was enduring this phase of post-diagnostic angst, psychologist Anne K. Ross was going through experiences that she would later capture in the pages of a wonderful book. Beyond Rain Man tells the story of a woman who, having devoted her life to helping children with developmental disabilities, was thrown for a loop when her son was diagnosed with Aspergers Syndrome.

With compelling bravery, the author tells the story of her son’s childhood. She describes his struggles, the tears and the triumphs, and the ups and downs of the relationships within her family. As an autism parent, I can relate to so many of the stories Anne tells in her book: the impact of her son’s Aspergers on his younger brother, the challenges of keeping a marriage healthy when there’s so much going on, and the endless concerns about the future.

I do not feel as if I read a book. I feel as if I sat on a couch chatting with the author over a cup of coffee, learning about her experiences and how she and her family got through them.

If time travel was a thing, I would toss a copy of Beyond Rain Man to that earlier version of myself who was desperately searching bookstores for answers. I would make the book magically appear in front of her, and I would tell her that this is the book she needs to make her feel less alone and more hopeful.

Kirsten Doyle was given a copy of “Beyond Rain Man: What One Psychologist Learned Raising A Son On The Autism Spectrum” by Anne K. Ross, in exchange for an honest review.

Filed Under: Aspergers Syndrome, autism, Autism Spectrum, Book review, Disability, family, life, parenting Tagged With: , , , , , , , ,
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10 Things That Shouldn’t Be Assumed About My Child With Autism

March 5, 2016 By

autism

1. Don’t assume that my child has low intelligence. Kids with autism are often capable of more than we give them credit for. Many of them have varying degrees of communication delays, which is why people don’t always realize the extent of their intelligence. As a result, they are often excluded from games and activities, when they should at least be given the option of participating.

2. Don’t assume that my child is a genius. When I tell people that my son is autistic, they immediately assume that he’s like Rain Man. Autistic savants do exist, but they are extremely rare. My son does have his strengths, and some of them could well turn out to be career material. But he’s unlikely to be the next Einstein, and people should not expect him to have some savant-like party-trick up his sleeve.

3. Don’t assume that my child doesn’t understand anything you say. Speech development in kids is divided roughly into two categories: expressive language (what a child says, or expresses) and receptive language (what a child understands, or receives). For many kids with autism, receptive language far outpaces expressive language, meaning a child who is non-verbal can understand and process a lot of what is said to him or her. It drives me crazy when people say things like, “Would your son like some juice?” when he is standing right beside me. Ask him if he’d like some juice. There’s a decent chance that he’ll answer, and the best way for him to develop his language skills is by practicing them.

4. Don’t assume that my child understands everything you say. Autism is an invisible disability. Apart from a very slight awkwardness in his gait, my son looks just like any other kid his age. You cannot tell just by looking at him that he has a disability. Therefore, one could be forgiven for assuming that he has the same language capabilities as other kids. If my son hesitates to answer you or act on what you’re saying, try breaking down your sentence into smaller, simpler chunks.

5. Don’t assume that my child “needs discipline”. Yes, I have on many occasions been “that mom”. You know, the one everyone is staring at because of her child melting down in the grocery store or making loud vocalizations in a restaurant. Most people, to their credit, are very understanding once they know that autism is in the picture, but there are always those who insist that a swift smack on the behind is all that is needed. I once had an elderly woman telling me, “In my day, no child was autistic because we were raised with discipline.” Here’s the truth: a meltdown can be awkward and uncomfortable for the parents and any onlookers, but it is a thousand times worse for the overwhelmed, anxiety-ridden child who is experiencing it.

6. Don’t assume that my child isn’t capable of misbehaviour. My son is twelve, and he has a twelve-year-old’s attitude. He is going through the same moodiness and unpredictability that other pubescent kids go through. It is easy to use autism as the default explanation for his behaviour, but as a doctor told me many years ago, “He is a boy with autism, but he is first and foremost a boy.” I have become quite adept at distinguishing my son’s “autistic” behaviour from his “typical bratty kid” behaviour, and I react accordingly.

7. Don’t assume that my child is incapable of emotion. Because he really isn’t. One of the biggest misconceptions surrounding autism is that autistics do not have the capacity for love and empathy. My son is one of sweetest, most loving people I have ever come across. He is full of hugs for the people he loves, and making people happy brings him joy. Here’s something he has done since he was little: when he wakes up in the middle of the night, he gets up to check on his younger brother and make sure he’s covered with a blanket.

8. Don’t assume that my child knows how to react to emotion. My son is undoubtedly an emotional being, but he does not always know how to respond to the emotions of others. And when he doesn’t know how to respond, his default reaction is hysterical laughter. This understandably appears to be incredibly insensitive to someone who is crying, but it’s a simple case of my son not knowing how to process something. He knows that crying is associated with sadness – he simply doesn’t know what to do with that.

9. Don’t assume that my child is not a social being. It is true that at times, social gatherings make my son uncomfortable. His tolerance for noise and crowds is definitely lower than that of most people, and for that reason we always choose to have events like Christmas and birthday parties at home. That way, he can retreat when he needs to. But in general, my son likes people. He likes being around them and interacting with them in his own way.

10. Don’t assume that my child is socially aware. To my knowledge, my son has never been around anyone who would deliberately want to do him harm. At his school, the general student body is tremendously respectful and protective toward the special needs kids. I have never had to worry about bullying or discrimination, but I know that this may not always be the case. My son is very trusting, as many people with autism are. He has limited sense of danger, as many people with autism do. He does not really have the capacity to understand that people can act nice but have not-so-nice motives.

This is an original post for Running for Autism by Kirsten Doyle.

Filed Under: autism, Children, Developmental Delay, Disability, Special Needs Tagged With: , , , , , , , , ,
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Why Parents Of Newly Diagnosed Kids Should Stay Away From Google

June 27, 2014 By

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Seven years ago, after an assessment that had gone on for a month, a doctor told me that my son had autism. I went home from that appointment and did what many people would do: I sat at my computer, went onto Google and typed in autism. I started reading and didn’t stop until my husband dragged me to bed with red eyes and an aching back in the early hours of the morning. A pattern started: I would wake up early, read about autism, go to work, come home, read about autism, do mom stuff, put the kids to bed, and read about autism until I was stopped or until I fell asleep at my desk.

After almost a month of this, my doctor – a different one – handed me a prescription for antidepressants, talked me down from a frightening ledge, and gave me a thirty-day ban from looking up anything autism-related on my computer. Looking back, I wish I had seen my doctor sooner. That ban that he imposed on me probably saved me from complete insanity.

When a child is diagnosed with something, the parents instinctively want to find out as much as they can about the condition. They operate under the belief that knowledge is power, and that constant research will yield solutions and methods and answers. In reality, all the constant research yields is more questions and confusion, along with a good dollop of guilt.

Here’s the problem with online research. When you do a Google search of autism, this is what you get:

autism_search

If you are in that surreal, mind-altered state that comes immediately after your child’s diagnosis, you have no idea how to refine that search. You are so desperate for any information at all that you cannot tell the facts from the fiction, so you just assume that everything you read is true. As a result, you start believing all of those articles that say you caused your child’s autism by vaccinating, or by cooking the wrong foods, or by using bug spray while you were pregnant.

At the same time, you find conflicting information about what you’re supposed to do. How do you choose from a wide range of therapeutic approaches, all of which claim to be the be-all and end-all? Do you medicate or not? Do you start imposing special diets, or do you stick to what you know your child will eat? Do you impose a strict routine to make things easier for your child, or do you switch things up a little in an effort to replicate the “real” world? Do you believe the miracle-cure claims of people who promote hyperbaric oxygen therapy, massive doses of Vitamin D or – God help us – chelation therapy?

The thing is, all of that obsessive research is not necessary. When children are diagnosed with autism or some other condition, most doctors will give the parents a bundle of papers to read: print-outs of articles, information sheets, a diagnostic report containing information and recommendations. In the early days, while you are processing the shock of the diagnosis, that is enough. You have to give yourself time to settle your head before you start going nuts on the Internet. If you absolutely cannot resist the compulsion to do online research, don’t use Google. Ask your doctor for a list of recommended links, and restrict yourself to those.

After a bit of time has passed, you do get to a point where you can do a focused search for information. You get to know which of your child’s quirks are indicative of his or her autism, and you discover what sets off meltdowns and episodes of sensory overload. You are able to conduct your research based not on a distressed response to devastating news, but on a calm assessment of your child’s unique needs and challenges.

In the beginning, though, you don’t need that. What you need more than anything is to be kind to yourself.

This is an original post by Kirsten Doyle. Google search screenshot by the author. Header image attributed to Valeriy Osipov. This picture has a creative commons attribution license.

Filed Under: autism, Autism Diagnosos, Disability, Google, Internet, Research
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5 Myths About Autism That Really Have To Go

May 27, 2014 By

 

Sharing a laugh with George

Sharing a laugh with George

1. People with autism are violent

Whenever there is a mass shooting, at least one media outlet makes a point of mentioning that the perpetrator “was probably autistic” or “was suspected of having Aspergers”. This kind of reporting is irresponsible, groundless and discriminatory. Yes, it is true that some people with autism have violent tendencies, but that is also true of the general population. Some black people have violent tendencies, but we don’t go around saying that the perpetrators of crimes “were probably black”, because that would be inexcusably racist. In any case, numerous statistics have shown that people with autism and other developmental disabilities are more likely to be victims of crime than perpetrators. I could go on about this all day, but instead I will point you to this excellent post written by my friend Sophie Walker.

2. People with autism have to follow special diets

Autism parents are always being told to change their kids’ diets. We are bombarded with messages telling us that everything we buy at the grocery store is aggravating the autism and poisoning our families. We are pushed towards the gluten-free, lactose-free, sugar-free, everything-free versions of foods, and there are two problems with this. First, in many cases it is not necessary. Second, these special diets cost an absolute fortune. Many autism families can barely make ends meet as it is – it is wrong to expect them to stretch themselves even further by spending money on expensive foods that in most cases, won’t make a difference. The proper way to do it is to have the child properly tested by a qualified professional, and then make any dietary changes that are needed.

3. People with autism are not capable of empathy

Last weekend, I was at a park with my kids. James was playing on the slides and George was sitting on the outskirts of the play area, contentedly picking up handfuls of sand and letting it slip through his fingers. All of a sudden, I heard a cry of pain, and I looked up to see that a little girl of nine or ten had fallen off the swing. She was lying on the sand crying, and the swing was moving back and forth like a pendulum above her head. Without hesitation, George leapt up and ran to the little girl. He stopped the swing from moving, and guided her out from underneath it. Then he simply stood there beside her until her mother reached her. The moral of this story is: don’t tell me that my child with autism is not capable of empathy. Like many kids with autism, he is capable of empathy, but he doesn’t always know how to express it.

4. People with autism are geniuses

Honestly, Rain Man has a lot to answer for. Because of that movie, people keep asking me if George can instantly do large math sums in his head, or identify with a single glance how many Cheerios have fallen out of a box. The answer is no. He can’t. He’s an intelligent child with problem-solving skills that will stand him in good stead through life, but I have to be realistic. The kid isn’t a genius, nor would I expect him to be. True savants, like artist Stephen Wiltshire, or musician Derek Paravicini, are rare.

5. People with autism don’t understand what’s going on around them

Sometimes I find myself in conversations with people who are asking me about autism, talking about George’s future and making comments on his limitations. I am always happy to have these conversations, but not necessarily in front of George. He may have autism, but he has ears that work, and he understands more than his limited speech lets on. On a related note, it drives me crazy when people ask things like, “Would he like a cup of juice?” when he’s standing right there. If you want to know what George would like to eat and drink, ask him, not me. He often needs help to answer questions, but he should at least be given the opportunity to try. How is he going to learn to have a conversation if people keep talking about him and not to him?

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

Filed Under: autism, Developmental Delay, Disability, Myths Tagged With: , , , , , , , ,
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Race Report: St. Patrick’s Day 5K

March 21, 2013 By

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Three weeks ago, my sports medicine guy told me that I was not to run the half-marathon that I was registered for the following weekend. Through my own stupidity, I had aggravated my old ankle injury, and the doctor practically guaranteed that if I ran that that half-marathon, I would be out for the rest of the season.

If I behaved myself (in other words, if I followed doctor’s orders), I would be allowed to run the St. Patrick’s Day 5K. So I scaled back my training and paced myself more appropriately. When the doctor told me to run on the treadmill, I ran on the treadmill. I only ventured out onto the road when he said I could. I behaved impeccably, and sure enough, I was cleared for takeoff. When I asked the doctor if he wanted me to exercise any caution during the race or if I could just go hell for leather, he said, “Run like you stole something.”

All right, then.

If I was going to run like I stole something, I might as well have fun with it. I decided to dress up a little, in keeping with the spirit of St. Paddy’s Day. And so on the morning of the race, I got onto the subway with temporary Irish-themed tattoos all over my face, ridiculous green-and-white striped socks going all the way up to my knees, and green and orange hair extensions attached to my hat. I didn’t even stand out. Torontonians – even those not of Irish descent – take St. Paddy’s Day very seriously, so I blended right in. It was the people dressed normally who stuck out like sore thumbs

I got to the start line with about half an hour to spare. Usually I like to arrive at races at least an hour ahead of time, but it was icy cold, so I was glad to have less time for standing around. I checked my bag and did some half-hearted warm-ups. After my injury, I wasn’t really expecting to be a speed demon at this race. My goal was to beat 32 minutes.

Ten minutes before the start, I stood at the start line among about a thousand other runners, almost all of whom were dressed for the occasion. It was fun to see all the leprechaun hats and bright green wigs. The starting siren went, and we were off.

My strategy was simply to go as fast as I could, but I got boxed in by the crowds at first. I was only really able to take off after 500 metres or so. The course was pleasant: downtown Toronto is kind of flat, so I was able to go at a fairly consistent pace. The mood was festive throughout. Runners were laughing and joking, admiring each other’s outfits, and cheering each other on. Some had liquid in their water bottles that looked suspiciously like beer.

The best part of the race was the inspiration I drew from the runners around me. The Saint Patrick’s Day run is organized in support of Achilles Canada, an amazing organization that enables people with disabilities to be athletes. There were a lot of runners on the course with a variety of challenges. There were blind athletes running with guides, people in wheelchairs, double amputees with prosthetics.

It was humbling to witness the enthusiasm and dedication of these athletes. I felt truly honoured to be among them.

I was absolutely spent at the end, and struggled to get through the last kilometre. But when the finish line came into view, I felt that magical surge of energy, and I was able to kick it up a notch, finishing in a time of 30:32.

Not bad for a post-injury first race of the season. I feel like this run has given me the kick-start I have been needing to start my season of training in earnest.

One final thought: the free post-race beer went down very well!

(Photo credit: Kirsten Doyle)

Filed Under: Achilles Canada, Disability, Race, running, Saint Patrick's Day Run Tagged With: , , , , , ,
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Oscar Pistorius: The Story We Don’t Know

February 14, 2013 By

As the parent of a child with a disability, I am always inspired by people who overcome all kinds of odds to accomplish amazing things. We need something to hold onto, us special needs parents. Specifically, we need hope. We need to know that given the right opportunities and encouragement, our kids have the potential to succeed. We don’t expect them to win the Nobel Prize or win gold medals at the Olympics, but we want to know that they have it in them to lead happy and productive lives.

When a South African athlete by the name of Oscar Pistorius became the first disabled man to compete in both the regular Olympics and the Paralympics in London last year, I was awestruck. Dubbed as the fastest man on no legs, Pistorius has been breaking world records left, right and centre.

I have been very vocal in my admiration for this man. As a runner, I am impressed with his sheer athletic talent. As a human being, I have been inspired by his spirit, and his nothing-can-stop-me attitude. I’ve never had a sense of him feeling sorry for himself. Instead, he’s just accepted the fact that he doesn’t have legs, and he’s kind of gotten on with things.

I have placed him on a pedestal and regarded him as a kind of hero.

This morning, I woke up to the shocking news that Pistorius has been arrested, and faces a murder charge in connection with the shooting death of his girlfriend, model Reeva Steenkamp. The incident happened in his house at about three in the morning. Neighbours heard screaming and shouting followed by gunshots. The couple were the only people in the house at the time, and Pistorius is the registered owner of the gun that was used to kill his girlfriend.

Around the world, companies are trying to decide how to manage their professional relationships with Pistorius. Some are pulling ads featuring the athlete; others are adopting a wait-and-see attitude. Public reactions are all over the map. Some say this tragedy was a terrible accident, while others are referring to Pistorius as a cold-blooded killer. Distressingly, some tasteless jokes – yes, jokes in the wake of this terrible incident – are circulating on the Internet.

And what of bloggers like myself? Over the last few months, I have posted several things in support of Oscar Pistorius, not only here on my blog, but on my Facebook page and my Twitter feed. I received an email from a reader today asking if I intended to remove those postings or speak out against what Pistorius did.

My answer, quite simply, is that I don’t know what Pistorius did. I’m not even willing to venture a guess or express an opinion – not until more is known about what happened. I do not intend to glorify him and insist that he couldn’t have willfully murdered the deceased, nor am I going to demonize him and say he must have done it. I just don’t know. None of us do, and I am not willing to join those who are already starting to try him in the court of public opinion.

Like some of those international companies, I am going to follow this story as closely as I can, and I am going to just wait and see.

(Photo credit: Nick J Webb. This picture has a creative commons attribution license.)

Filed Under: Disability, Oscar Pistorius, Reeva Steenkamp, running Tagged With: , , , , , , , ,
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Disabled or Differently Abled?

November 2, 2012 By

Today is Day 2 of the National Health Blog Posting Month challenge, and one of the suggested prompts invites writers to address the weirdest aspect of their health. As a health advocate for my son George, who has autism, I am often struck by how odd this condition is compared with many other developmental disabilities.

One of the things that makes it different is the reluctance of many people, both within and outside of the autism community, to use the word “disabled”. Parents of children with Down Syndrome or cerebral palsy are allowed to refer to their kids as “disabled”, but I always have people trying to force me to use the term “differently abled”.

Yes, there are many things that George can do. He can read fluently, he was doing multiplication in his head long before anyone formally taught it to him, he has superb problem solving skills, and he knows his way around a computer better than I do. But when he comes home from school, he cannot tell me what his day was like. I have to keep a firm hold of him when we are out on family walks because he does not understand the danger of running out into the traffic. He does not know how to play with other kids. He will only take a shower if someone is in the shower with him, and at nine, he still needs hand-on-hand assistance and extensive prompting to accomplish the task of brushing his teeth.

To me, the term “differently abled” implies that George can do anything other kids his age can do, but in different ways. But that is not the case. There are things that George simply cannot do for himself – basic daily living skills that other kids master by the time they’re six. In my book, George is developmentally disabled.

And so what if he is? I am immensely proud of George. I adore his sweet, loving nature and I admire his absolute determination to accomplish his goals. Even though he is still so young, he shows a steel core of tenacity. This is not a kid who gives up. I feel absolutely no shame or embarrassment about the fact that he has a disability.

So why not tell it like it is? Why should there be a need to couch it in pretty language? Are these well-meaning attempts to avoid use of the word “disabled” not undermining our attempts to ensure acceptance and inclusion for people with all kinds of disabilities?

What are your thoughts? Are we heading into territory where the word “disability” cannot be used? Would you or do you use that word with reference to your own special needs child?

 

Filed Under: autism, Disability, National Health Blog Post Month, WEGO Health Tagged With: , , , ,