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Untouchable Moments

February 8, 2014 By

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My son George has a thing about hair – specifically, my hair or, if I’m not available, hair that is similar to mine. For a while, whenever we went anywhere, we would have to deal with the problem of him going up to random strangers with long dark hair, and stroking them on the head. We saw the need to nip this in the bud as quickly as possible: it was cute when he was seven or eight, if it was still happening by the time he got to twelve or thirteen, it would be downright creepy.

We have more or less gotten that impulse under control. When we are out, George leaves strangers and their hair alone. But it is still a big problem at home. He obsessively touches my hair, kisses it, and nuzzles his face into it so he can smell it. And it’s – you know – quite a heavy-duty invasion of my personal space.

It’s a tricky problem to solve. My kids love physical contact, and my husband and I are happy to oblige them. We are generous with hugs and snuggles, we chase the kids and play wrestling games with them, and when the weather is nice we go into the back yard and play games like tag. And lately, because George seems to be incapable of touching me without touching my hair, I have caught myself avoiding physical contact with him, either by retreating to places where he cannot get me, or by gently pushing him away.

For a mom like me who’s always been into the hugs and cuddles, it’s a terrible feeling, not wanting my child to touch me. I feel guilty and sad. I want to hug my boy, but I don’t want the accompanying hair-stroking and sniffing that goes with it. Today I’m feeling particularly rough, because George was awake all night, and he was at my hair. All night long. And today, every nerve ending in my body feels on edge. I feel like I will scream if George or anyone else touches me. And I feel like a truly awful mother for declining hugs and insisting on doing things by myself.

I recognise that my hair fulfills some sensory need in George – some complex need that I don’t understand and that he, with his autism, finds it impossible to explain. I sometimes snap at him for being all over my hair all the time, and then I feel bad, because it’s not his fault. It’s not something he can help, and until we can figure out some other way for him to satisfy that sensory need, it’s not really something I can help either.

The obvious solution – one that has been suggested to me several times – would be for me to simply cut my hair. But I am loath to do that, for a number of reasons. Long hair is easy to maintain. Short hair requires styling, and I don’t have the money or the inclination to keep going to the hairdresser in order to look respectable. In addition, when it’s time for me to go running, it’s really easy for me to tie it all back in a ponytail. But all of this is beside the point: I just don’t know that cutting my hair would solve the problem.

I’m sure – or I hope – that this is one of those problems that we will solve, that we will look back on as a memory at some point in the future. For now, I seem to be stuck with my permanently aching scalp and what I hope is a reversible aversion to physical contact. I am hopeful that sooner rather than later, I will be able to fully enjoy hugging my beautiful boy again.

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

Filed Under: autism, Hair, Physical Contact, Sensory Issues Tagged With: , , , , , ,
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Autism In The Workplace: Opportunity Vs. Discrimination

January 18, 2014 By

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As I was scrolling down my Facebook newsfeed this morning, I came across a picture of a bunch of people, with a caption saying, “Share if you believe in autism acceptance”. If you click on the link that comes with the picture, you are taken to an online pledge entitled “Hire Employees On The Autism Spectrum”. The blurb points out that individuals with autism often have exceptional talents and ways of thinking, and can therefore be a valuable addition to any workplace. Then there is an online form where you fill in your name in order to sign the petition.

I believe that the intentions behind this are fabulous. Too many times, I see people being excluded from activities and opportunities simply because they have autism. It starts early in life, with kids not being invited to birthday parties or included in games (whether the child chooses to participate is another story – my point here is that it would be nice for them to at least be asked). As the child grows older, I am sure that exclusion extends to teenage activities, educational opportunities, and eventually, the workplace. I am all for taking steps to ensure that people with autism are given equal opportunities, and accommodations where needed.

But…

Do we want a situation where employers are actively seeking out and hiring people with autism, simply because they have autism?

My son George is a whiz with numbers, although I suspect that this has less to do with autism than with simple genetics. My husband and I are both good with numbers, and so is my younger son James. We are a family of math geeks. And like me, George is good with computers. His autism definitely gives him a unique way of thinking and fantastic attention to detail in certain tasks. I see him growing up to be some kind of computer nerd – a programmer, maybe, or someone who actually puts computers together.

I would love to see some employer recognise his skills, see the value that he could add, and hire him. But I wouldn’t want his autism to be a factor in that decision. If he’s the best qualified candidate for the position, he should get the job. If someone else is better qualified to do the job, that person should be hired. Maybe George will need some accommodations during the interview and selection process. Maybe the hiring manager will have to use some creative thinking or some kind of quantifiable measure to choose the right candidate. Maybe, if George is the one selected, some workplace accommodations will need to be set up for him.

But I strongly believe that employment selections should be based on qualifications and ability to do the job, and not on whether or not the person has autism. If George’s co-workers one day say things like, “Wow, that autistic dude is awesome at what he does”, I would be completely fine with that. If, on the other hand, they say, “Yeah, George is good at his job, but he was only hired because of his autism”, that would make me sad.

I believe the hiring process should be fair, but it has to be fair to everyone. Hiring someone because of what disability he or she might have is unfair to the individual, and it’s unfair to other people.

There is a place for the online pledge that I described earlier, but I think it should be differently worded. Instead of urging employers to “hire people with autism”, the call should be for employers to give people with autism an equal chance.

What do you think? Is a drive to employ people with autism a good thing, or is it a form of discrimination that could be unfair to everyone?

This is an original post by Kirsten Doyle. Photo credit: Kanemojo. This picture has a creative commons attribution license.

 

Filed Under: autism, Discrimination, Employment, Fairness, Job, Workplace Tagged With: , , , , , , , , , , ,
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Leaps Of Kindness

December 28, 2013 By

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Yesterday, I wrote about the difficulty of buying toys for kids with autism. As hard as it is, from time to time we are lucky enough to find something that my son George really loves. A few years ago he was into the Brown Bear, Brown Bear books, which were successfully used as his transition object for some time. Mr. Potato Head has been an essential part of my family’s life for about seven years now. George never gets tired of them, as his staggering collection will testify.

A year ago, we stumbled upon something else that would bring George a lot of joy, when we bought each of the boys a Leap Pad for Christmas. This child, who usually takes a bit of time to warm up to a new toy, pounced on the Leap Pad immediately. He spent countless hours watching the videos and playing the games, and even making a few simple videos himself. We started to see improvements in George’s speech and cognitive skills as a result of the games he was playing.

Then, about a month ago, catastrophe struck. Somehow, this device which had survived almost a year of an autistic child playing with it, got its screen cracked. This was an absolute disaster. George’s Leap Pad breaking was utterly traumatic for him. He was bereft, and could not understand why his beloved toy was no longer usable.

The next month was – rough. George’s younger brother James was remarkably kind in sharing his Leap Pad as best he could, but there were still a number of meltdowns and many, many tears. And in my current state of unemployment, I couldn’t afford to buy another Leap Pad. The situation seemed hopeless for poor George.

But sometimes, when situations seem hopeless, little miracles can happen. Maybe you win money in the lottery or find a $100 bill lying in the street. Or maybe – as was the case with us – you speak to someone who cares.

We called Leapfrog, the company that makes and distributes Leap Pads, and we explained to the customer service representative what had happened. I wasn’t really sure what we were hoping for – perhaps a discount on a new Leap Pad, or the option to send the broken one somewhere to be repaired.

What we got was so much better. Although the cracked screen is not covered by the warranty of the product, and although Leapfrog was under absolutely no obligation to do anything, the customer service lady told us that she would have a one-time replacement sent to us. I had to follow an elaborate set of instructions that were emailed to me, and then the new Leap Pad would be on its way.

Yesterday, we came home from a shopping trip to find a parcel on our front steps. I looked at the return address on the box, and seeing that it had come  from Leapfrog, I handed the box to George to open. There are no words to describe the look of absolute joy on his face when he saw what it was.

Thank you, Leapfrog. And thank you, Customer Service Lady. The fact that you cared has brought many smiles to the face of a child with autism. And that is the best possible Christmas gift for a parent.

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

 

Filed Under: autism, Broken Toys, Customer Service, Kindness, Leap Pad Tagged With: , , , , ,
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How To Buy Toys For Kids With Autism

December 27, 2013 By

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One of the hardest things for us autism parents to deal with is buying toys for our kids. Our kids don’t really do toys, simply because they don’t really play. It can be heartbreaking to get something we are sure our child will love, be all excited as we give it to them, and then kind of deflate while the child shows little or no interest in the toy.

One day, shortly after George was diagnosed with autism, I bought him an activity table that was chock-full of sensory-type things for him to do, including a toy phone. He tugged mightily at the toy phone until he succeeded in pulling it off its string, and then spent hours – literally, hours – lying on his back playing with the string. He paid absolutely no attention to any other part of the activity table.

And so I tried crafty things. Paper, pencils, crayons. I mean, what kid doesn’t like to scribble and make a mess, right? In theory, this was a good idea, but in practice it fell a little flat. Although there’s never been anything wrong with George’s gross motor skills – the kid sometimes demonstrates Olympic-like coordination – his fine motor skills are still behind where they should be. For a long time, he just didn’t have the ability to hold the coloured pencils and safety scissors that I lovingly bought him.

After a decade of autism parenting, I am finally starting to get it. I am, through my experiences and those of others, figuring out how to get toys and activities that my son will actually use. Here are some of my pearls of wisdom.

1. Test-drive toys from a local lending library before buying them. You’ll save a lot of money if you can discover ahead of time that your child won’t like the toy (this tip comes from fellow autism mom Jacquie, who left it as a comment on a previous blog post).

2. Go with your child’s interests. If that means buying Mr. Potato Head or Mega Blocks for ten Christmases in a row, so be it. At least your gifts will be appreciated.

3. Check out websites for educational toys and activities. A great one is UK-based Junior Scholars. They have an entire section for special needs items, including ergonomically designed pencils and pencil sharpeners for left- and right-handed children, fine motor activities like lacing toys and peg boards, and giant hourglass-style timers, which are ideal for kids who need visual reminders. Conveniently, they accept PayPal as well as credit card payments, and they ship internationally.

4. Think outside the toy aisle. When we realized that George’s fancy activity table was only being used for its string, we decided to get rid of it. We couldn’t expect George to go cold turkey on the string, and we didn’t want to spend a fortune on a toy just for the sake of a string. So we went to the dollar store and bought one of those miniature mops that some people use for cleaning dishes. It worked like a charm.

5. Think visually. Many kids with autism are visual learners. We tried for months and months to teach George how to name colours. In the end, all it took was two months of playing Mr. Potato Head games with my mother.

6. Cater to the deep pressure needs. Many kids with autism love to do things like swing, jump and wrestle. Providing toys suitable for this will not only satisfy that need within your child, it might also save your furniture. We have to keep one of those small round trampolines in our living room for George to jump on. I think we’re on our third one now, and that’s OK. Replacing a $30 trampoline is a lot cheaper and easier than buying a new bed.

If you buy a toy that gets a lukewarm reception, give it a bit of time. Like many typical kids, auties have interests that wax and wane, and sometimes they simply need to get used to the new toy being there.

Do you have any tips to add? Leave them in the comments!

This is an original post by Kirsten Doyle, published in accordance with my disclosure policy.

Photo credit: Junior Scholars. Picture used with permission.

Filed Under: autism, Junior Scholars, Special Needs, Toys Tagged With: , , , , , , ,
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Holiday Season Survival Tips For Autism Families

November 28, 2013 By

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We have reached the time of year when Christmas decorations come out and people start talking about how much Christmas shopping they have left to do. In my case, I still have to do 100% of my Christmas shopping left to do. That percentage is not likely to change until about a week before Christmas.

Christmas also means spending time with people, going to different events, making sure the Santa picture gets taken – all of that good stuff that gets a little bit overwhelming. If it’s overwhelming for me, I cannot imagine what it must be like for a child who has autism. And so I asked a group of autism parents what measures they take to ensure that they – and their kids – get through the holiday season intact. Here are their responses.

* Schedule everything out. Avoid scheduling too much for one day, and ensure that the schedule includes breaks.

* Do a visual schedule and/or social story for each day that something is happening.

* Tie a knot in the end of the rope and hang on!

* Do what works for your family and don’t compare your celebrations to anyone else’s. Remember that all those Pinterest and Facebook pictures are snapshots of one posed instant and do not mean that everyone else has their act together. Dare to send a Christmas picture of your kids pulling each other’s Santa hats off and poking each other with candy canes.

* Do not let your relatives turn the holiday gathering into an annual progress/lack-of-progress check on your autie. Refuse to be quizzed and just pour another round of drinks.

* Appreciate the fact that your autie doesn’t care about the presents. Know that you’re giving him plenty that can’t be wrapped up — like permission to play Raffi’s Christmas album 24/7 all December. Priceless.

* Go at your kid’s speed. When it’s time to call it quits, call it quits, even if that means it takes three days to open Christmas presents.

* Try to minimize sensory input to avoid meltdowns.

* Have a quiet room your autie can retreat to when everything gets overwhelming.

* Do not insist that your autie open all of his presents at once. Let them set the pace.

* Limit the number of parties you go to with your autie. Make arrangements to leave early if you need to.

* Bring his favorite food with you, so he has something to eat if he can’t tolerate any of the party foods.

* Ask family members to remove all those wire and plastic pieces from the packaging of gifts they are giving to your child. That way, your child can just open the present and take it out.

* Take two cars if possible, so when the autie is ready to go, one parent can stay with the other kids.

* Bring familiar stuff, especially if festivities will be in an unfamiliar place. That could be a toy, or a favourite cup or plate to use.

* Don’t feel guilty about not having a Norman Rockwell Christmas. Have a Christmas your kid will enjoy, not what everyone else thinks it should be. Christmas is for kids including ours.

* Don’t be afraid to stand up for your child “just because it’s the holiday”. You and your child shouldn’t have to put up with someone’s crap just because you only see them on the holidays.

* Ask people to come to you. Other people may not have “autism friendly” houses, so it may be easier to host everything at your house. This works better for small families.

* If you have a large family, it might be easier to let someone else host the festivities. That way, you and your autie can leave if things get overwhelming, which is easier than kicking guests out of your house.

* If you have one of those families that doesn’t get along, don’t feel bad about not spending Christmas with them. Stress is not good for our kids.

If you have any tips of your own, please add them in the comments!

This is an original post by Kirsten Doyle, which input from some amazing autism parents.

Filed Under: autism, Christmas, family, Holidays Tagged With: , , , , , ,
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Easy Breezy Autism Covergirl?

November 13, 2013 By

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Being an autism parent comes with many challenges. One of them is society’s tendency to sensationalise people with autism who have any kind of talent. Temple Grandin, for instance, is frequently held up as a shining example of what autistic individuals might be able to accomplish. So, bizarrely, is Rain Man, who isn’t even real.

One of the latest autism whiz kids is a young woman by the name of Carly Fleischmann. She is non-verbal, and at a young age doctors predicted that her cognitive development would be limited. She had a breakthrough when she typed a message on a computer, and since then the world of communication has opened up to her. With the help of her father, she has written a book, Carly’s Voice, giving an insider’s view of autism.

My reaction to Carly’s story is a mixture of admiration and skepticism. Admiration because this girl has clearly achieved more than anyone thought she would. She has found a way to communicate, she has co-authored a book, and by all accounts she is now attending college. Good for her. And I don’t say that in a snarky, sarcastic way. I say it with all sincerity.

The skepticism arises from her reaction at being rejected as a Cover Girl model. She seems to be of the opinion that (a) Cover Girl rejected her because she has autism, and that (b) the reason Cover Girl should have accepted her is because she has autism.

Let me pause for a moment to say that I’m not intending to start a big debate about media portrayals of beauty. Yes, I know that the models we see on magazine covers have been Photoshopped to Kingdom Come. Yes, I’m aware that real people don’t look like that in real life.

I also know that physical beauty has nothing whatsoever to do with the presence or absence of autism. There are ordinary-looking people with and without autism, and there are absolutely show-stoppingly gorgeous people with and without autism. As the parent of a child with autism, I have heard many insults and unfair stereotypes aimed at people who are on the spectrum. But I have never heard anyone claim that people with autism are ugly.

This leads me to the following question: should Carly Fleischmann be granted a Cover Girl contract in spite of not meeting their physical standards, just because she has autism? I’m no oil painting myself, but I would venture to say that I have just as much inner beauty as Carly does. Why, then, should she have more entitlement to be a Cover Girl model than me? I’ve also overcome challenges and accomplished great things.

My son George is ten. He is described as “functionally verbal”, which means he has enough verbal communication to meet his needs. He has enough words to make requests and get by, but he cannot have a conversation. He has good academic skills, but lacks the ability to apply the academic concepts to real life. He can independently get dressed and use the washroom, and he can make himself a sandwich or pour himself a glass of milk. But he would not look at the colour of a traffic light before crossing the road, and if you gave him $10 and put him in a store, he wouldn’t know what to do.

I am big on accommodations for kids with autism. My child needs plenty of them, and if I’m to be realistic, he’ll more than likely need accommodations well into adulthood. He’ll probably be able to hold down a career – maybe he’ll even get to go to college – but he will almost definitely need to have his environment adapted in a way that enables him to succeed.

But.

I would not want my son to be on the cover of some magazine just because he has autism – unless it was a magazine about autism, or at least a magazine featuring a story about autism.

Look, if my son turns out to be the fastest athlete in the province but is denied a place on the Olympic team just because of his autism, I will turn into the world’s biggest autism advocate warrior mom. But if he misses the Olympic qualifying standards, would I want him to be given a place on the team anyway, just because he has autism? Hell, no.

I want my son to come by his accomplishments and accolades honestly, by earning them. I don’t want people to say that he got this job or won that award “just because he has autism”.

What do you think? Is Carly Fleischmann right to be upset over not being accepted as a Cover Girl model? Am I short-changing my son by wanting him to be judged by the same standards as other people?

This is an original post by Kirsten Doyle. Photo credit: mhs.journalism. This picture has a creative commons attribution license.

 

Filed Under: autism, Carly Fleischmann, Cover Girl Tagged With: , , , , , , , ,
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Book Review: Grace, Under Pressure (Sophie Walker)

October 28, 2013 By

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Being the parent of a child with autism can be a very lonely experience. Discovering that your child has a lifelong disability is a bit like being catapulted from your life into a kind of parallel universe where you don’t know what any of the rules are. You have to navigate the confusing maze of government funding and services, and at times you – and your child – are at the mercy of the whims and moods of the people who make decisions about what supports your child might qualify for.

As you wander helplessly in your parallel universe, not knowing where to turn, you might suddenly feel a hand in yours. Sometimes it will be a hand that gently guides you in the right direction. Sometimes, it will be a hand that reassures you, that lets you know you are not alone, that there are others in this same parallel universe who know what you are going through.

Reading Grace, Under Pressure by Sophie Walker had that effect on me. I started reading the book during a time when life seemed to be conspiring against me, and as I immersed myself in the story, I felt as if the author had taken my hand to keep me company through this journey.

Sophie’s life and mine have some strong parallels. Like me, she is the parent of a child on the autism spectrum, and running has been a salvation for her just like it has for me. Both of us run to raise funds for autism, and both of us live with the challenges of parenting a neurotypical child alongside a child with special needs.

In Grace, Under Pressure, Sophie tells the story of her life with her daughter Grace, who has Asperger’s Syndrome. Through wonderfully crafted narrative, we are taken through Grace’s early childhood, the struggle for answers and support, and Sophie’s evolution as a marathon runner. We get a balanced look at the ups and downs of special needs parenting, and the blood, sweat and tears of distance running. We see the laughter, the tears, the desperation, and the gut-wrenching relief when the light at the end of the tunnel finally comes into view.

This is a book about so many things. It is about a brave, bright little girl finding her way in a world in which she is different. It is about the unwavering dedication of a mother to her child. It is about the perseverance of an athlete striving to reach new heights.

Above all, it is about courage and inspiration, and the idea that no matter what, we should never give up hope.

Sophie WalkerAbout the author: Sophie Walker has been a journalist for over 15 years, reporting on events in such places as London, Iraq and Afghanistan. She lives in London with her husband and two daughters.

For more information about Sophie Walker and Grace, Under Pressure, please visit http://authorsophiewalker.com/home.

Many thanks to New World Library for providing me with a review copy of Grace, Under Pressure. All opinions expressed in this post are my own.

Filed Under: Aspergers Syndrome, autism, Book review, parenting, running, Sophie Walker, Under Pressure Tagged With: , , , , , , , , , ,
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The First Decade

September 18, 2013 By

Today my son George is ten years old. There are no words to say how I feel, so I made this video instead.

A Decade Of George

This is an original video created by Kirsten Doyle. Music written and produced by Eric VonHunnius.

 

Filed Under: autism, Birthday, Childhood, family Tagged With: , , , , ,
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Autism: My Child’s Reward For My Specialness

September 5, 2013 By

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A story that’s trying hard to be a feel-good tale is doing the rounds on Facebook. A family that includes a special needs child was eating out at a restaurant, and the special needs child started to get a little boisterous. Mom was feeling self-conscious, knowing that her son’s behaviour might be bothering other diners, but then a waitress approached the table and said that a kind stranger was footing the bill for their meal.

So far, so good, right? As the parent of a child with autism, I am touched that someone would extend such kindness to a special needs family. But the story doesn’t end there. The waitress also handed the family a note from the stranger. The note said, “God only gives special children to special people.”

While many people are going on about how sweet and kind all of this is, I am blown away by the presumptuousness within the message. Yes, paying for the family’s meal was incredibly nice, and I have no problem with the gesture. It’s the note that I take issue with, and not only because of the implied assumption that everyone believes in God.

My son was diagnosed with autism at a time when a lot was wrong in my life. My relationship with my husband had hit a rocky patch, our finances were in complete meltdown, I was going through postpartum depression, I was struggling with the loss of my father… There was a lot going on.

During this terrible time, while I was trying to adjust to the reality of autism, someone told me that God never gives us more than we can handle. If that is true, how do you explain the fact that there are people who reach the point of being unable to cope, who feel so desperate that they decide to take their own lives? How do you account for the mothers who feel so overwhelmed and lost that they either abandon their children or surrender them to social services? What about the people who lose their homes, families and jobs because they feel that they can drown their problems in drugs or alcohol?

God only gives special children to special people?

The implication here is that autism and other disabilities are some kind of reward. What kind of God would do that?

“This person is so great and so awesome and so special that I am going to give their child a disability that slows down their speech, slows down their learning, reduces their chances of independence, and makes them scream in frustration when they cannot express themselves.”

Call me crazy, but that’s one messed-up reward system.

Here’s the reality: there’s nothing special about me. Yes, I’m a good mom. I provide my kids with the necessities of life, I shower them with love, I advocate for them, I try to instil them with confidence…

But I also get overwhelmed. I have days when I yell at them too much. Sometimes I let them watch as much TV as they want because I’m too tired and fraught to entertain them myself. Occasionally I’ll buy them junk food because I don’t want to cook. There are times when I get impatient with my son’s autistic behaviour even though it’s not his fault.

In other words, I am just like 99.99999% of other moms: I do the best I can with what I’ve got, and I accept that I will have my good parenting days and my bad parenting days. I’m not any better – or more “special” – than anyone else.

I didn’t get my child with autism as a result of God deciding that I was special. I got my child with autism through an accident of genetics.

I love my son more than life itself. Whenever I see the look absolute desperation in his eyes when he’s having a meltdown, my heart breaks for him. I ache inside when I think of the fact that he doesn’t have friends because he doesn’t know how to, and I constantly worry about whether he will be OK in the future.

I don’t believe in God, but if I did, I’m pretty sure he wouldn’t make a child go through life with a disability just because the child’s parents were “special”.

This is an original post by Kirsten Doyle.

Filed Under: autism, Giving, God, Kindness, Special Needs Tagged With: , , , , , ,
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