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10 Things That Shouldn’t Be Assumed About My Child With Autism

March 5, 2016 By

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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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Autism Advocacy: 8 Survival Tips For Parents

April 13, 2015 By

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Yesterday, I shared my family’s recent success at securing a good Grade 7/8 program for my son, who has autism. The short version of the story is that my husband and I knew immediately that the program George was slated for would be very bad, not only for him but for his classmates. And so we went to bat for the kids. Over a period of seven months, we had meetings and phone calls with all kinds of people in the school board. A couple of weeks ago, George’s principal called to tell us that a Grade 7/8 program was being introduced in his current school. The news could not have been better. We would have been OK with a good program at any school, but George’s current school, which is fantastic in so many ways, was definitely the prize we were hoping for.

George was diagnosed with autism seven years ago. In that time, I have learned a lot about what works and what doesn’t work when it comes to fighting in his corner. Here are some of the big ones.

1. Know what your child’s rights are. Don’t go into any meeting with your child’s teacher, principal or any school board representative without having a clear idea of what you are entitled to ask for on behalf of your child. A few pointers: in Ontario, you cannot be forced to homeschool, you cannot be forced to relocate and you cannot be forced to accept a shortened school day. Your child is entitled to an education in a public school in his or her neighbourhood, with the same number of instructional hours as any other student, regardless of what his or her abilities or disabilities are.

2. Have a clear idea of your desired outcome. This is not always as easy as it sounds. Sometimes we simply want things to be different, or better. You have to ask yourself what that looks like. Perhaps you love the teacher but feel that extra assistance is needed. Maybe you simply want clearer IEP goals or better support during transitions. Or maybe you need a completely new direction for your child. Whatever it is, you have to know what you are aiming for. Ask yourself what the outcome would be if you got to be in charge of all the decisions.

3. But be prepared for compromise. This means knowing what you are prepared to settle for. In my case, first prize was a new program for George in his current school. There was always a chance that that wouldn’t happen, so we were prepared to settle for a good program at a different school. Aim for what you are really, really hoping for, but have some acceptable alternative scenarios kicking around in your mind as well.

4. And know what you will not accept. Sometimes, you may be offered a “solution” that just doesn’t work. You are not compelled to accept anything just because you’re told it’s the only option. What we were not prepared to accept was the program George was originally supposed to go to. We made that crystal clear early on in the discussions, and we did not budge. Negotiation is always key in discussions like this, but you have to be clear on the points that you will absolutely not move on.

5. Don’t go in looking for a fight. If you walk into the room assuming that the people you are meeting with are on the same side as you, the entire tone of the meeting can swing in your favour. The thing is, most of the time they will be on the same side as you. Advocating for your child does not always have to be a battle. Principals and teachers are caught between a rock and a hard place. On the one hand, they genuinely care (or they should) about the best interests of your child. On the other hand, they have to operate within rules and procedures that they cannot control. Show understanding towards them, and more often than not, they will show understanding towards you.

6. But don’t let anyone intimidate you. Look, from time to time you will encounter ass-hats. That’s just life. Smile serenely, know that if someone is being an ass-hat to you, they’re probably an ass-hat to everyone, and identify who your allies are. If there’s no ally in the room, politely tell them you need to reschedule the meeting, and go out and find an ally. You can bring anyone you like. You can even hire an advocacy consultant to accompany you. We were fortunate in that George’s principal was firmly on our side right from the start.

7. Remember that the special education community is small. No matter how frustrating the process is, no matter how badly you want to scream and swear, try your best to take the high road. People in the special education field tend to crop up again and again in different capacities. The person sitting opposite you today, whose head you badly want to rip off, could be in a position to help you three years from now. Don’t let anyone walk all over you, but keep your cool and stay polite.

8. Be persistent. If a meeting doesn’t yield acceptable results, call another one. If you agree on a course of action but something isn’t working, go back and see if something can be adjusted or tweaked. You are never obligated to just accept something for your child that is not working.

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

Filed Under: Advocating for Another, autism, Education, parenting, School, Special Needs Tagged With: , , , , , , , , , , , , , , ,
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Autism, Advocacy And Hope

April 12, 2015 By

George writing wordsMy son George started Kindergarten just four short months after being diagnosed with autism. It was a bit of a terrifying time for me: I felt as if I had been thrown into this mysterious world full of mazes and obstacles with no map, no compass, and no fixed destination. I didn’t know where I was supposed to be going or how I was going to get there. I had no idea how to navigate the terrain of special education.

Over the seven years between then and now, we have had to do our bits of advocacy, but for the most part, George’s time at school has been very positive. He has had a series of compassionate, competent teachers and every year, we have seen progress. We have kind of breezed through the K-to-6 years feeling good about George’s education.

In recent months, this sense of security almost came to a screeching halt. George, currently in Grade 6, is in a K-8 school that we love. The teachers are fabulous, the principal encourages open dialogue with parents, and the kids in special needs classes are treated with kindness and respect by their typically developing peers.

The only problem with the school is that it does not have a special education program for Grade 7 and 8, so we were facing the prospect of sending George to a program in a neighbouring school. When we went to visit the program last year, when George was finishing off Grade 5, we were not happy with what we saw. We just knew, with that instinct that parents have, that if George went into that program, we would start to see a regression within days.

And so we started the process of advocating for a better Grade 7/8 placement, not only for George, but for all of his classmates. Starting with the principal at his school, we escalated the issue, insisting on meetings with trustees, superintendents, and anyone else who might have any kind of influence in deciding my son’s future.

About seven months after our first meeting with the principal, we got word of the school board’s decision: George will not be going to the overcrowded, under-resourced program that we saw and hated. Instead, a special education Grade 7/8 program is being introduced in his current school. George and his classmates will stay in the environment that they know and love. They will continue to be a part of a student community that is caring and supportive, with a principal who has been firmly on our side all the way.

Advocacy can be difficult and frustrating. It can be time-consuming and, at times, heart-breaking. But when it results in a better future for many children who need other people to fight for them, it can be the most rewarding thing in the world.

Come back tomorrow for some tips on advocating for your children.

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

Filed Under: Advocating for Another, autism, Education, School, Special Needs Tagged With: , , , , , , ,
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Autism Is No Excuse

August 11, 2014 By

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A few weeks ago, there was a story in our local community newspaper about a boy with autism who had been asked to leave a restaurant, along with his mother. When I first read the headline – Autistic boy booted from restaurant – I felt outrage on behalf of the mother and child. But when I read the story, I found my sympathies shifting to the restaurant manager.

What happened was that a mother and her son with autism were eating at a fast food restaurant, and the child started melting down over something. He was shrieking and banging on the table, and at one point he grabbed a fistful of fries and threw them. The mother made little effort to soothe the child, saying, “He has autism. There’s nothing I can do.” When the manager politely asked her to leave, she complied, but in the aftermath she made a big deal of the fact that her son had been discriminated against because of his autism. The manager made a big deal of the fact that the child had been acting in a manner that was disruptive to other diners.

Anyone who’s been reading this blog for any length of time will know that I’ve dealt with my share of autism meltdowns. I’ve been that mother whose child kicks and screams in public places. I’ve been on the receiving end of the stares and comments, and on two occasions, I have had to offer to pay grocery stores for goods that have been damaged as a result of my son’s outbursts.

But my son’s autism does not entitle him to create a situation that disrupts the activities or enjoyment of other people. When he acts out in public, it’s for one of two reasons: either he is having an autism meltdown, or he’s acting like typical bratty kid. If he’s having an autism meltdown, it’s up to me to try and soothe him, either by removing him from the situation or by finding a way to divert his attention to something else. If he’s acting like a typical bratty kid, it’s up to me to discipline him and make it clear to him that bad behaviour is not acceptable.

Either way, it’s never OK for me to use my child’s disability as an excuse to let him behave in a way that impacts other people. He may have autism, but he still has to be held to a certain standard of behaviour, just like the rest of us. That restaurant manager was not reacting to the fact that the boy had autism. He was reacting to the child’s disruptive actions and the mother’s failure to do anything.

There was a story in the news a few years back about a child with autism who was removed from a plane under similar circumstances. He was lying in the aisle having a meltdown while the flight attendants and other passengers were trying to step over and around him. All attempts to get him settled in his seat were failing, and eventually the boy and his father were taken off the plane. My Facebook feed erupted in outrage as people accused the airline of discriminating against the boy with autism.

But really, what was the airline supposed to do? Delay the flight until the meltdown was over, which could have taken hours? Take off with a boy kicking and screaming in the aisle? Allow the behaviour to continue without regard for the safety of the flight attendants or passengers? My view was very unpopular, but I believe that the airline took the only action they really could. They would have done what they did whether the child had autism or not. In fact, from what I could glean from the story, the airline actually delayed their decision to remove the child because they had been made aware of his autism.

This subject reminds me of a conversation I had many years ago, when I was still in South Africa. I was talking to a co-worker about a high-profile murder case in which the accused had been convicted and sentenced to life in prison. Evidence against this individual had been overwhelming, in terms of forensics and witness accounts. My co-worker, a black man, told me that this man had been sent to prison just because he was black. I disagreed.

“No,” I said. “He’s been sent to prison because he killed four people.”

My co-worker did not dispute the fact that the man was guilty, but he was stuck on this idea that the outcome of the trial was symptomatic of racial discrimination. But what was the alternative? Should the judge have let the criminal walk free just to prove that he – the judge – wasn’t a racist?

Should flight attendants, restaurant managers and other people endure a child screaming and throwing things in public just to prove that they don’t discriminate against people with autism?

Discrimination in any way, shape or form is wrong. I do not condone racism, gender discrimination, homophobia or any kind of bias against people with disabilities. I am big on human rights and equality. I believe that accommodations should be made for members of minorities and people with disabilities where possible – like wheelchair accessible buildings, government services in multiple languages and alternative screening processes for job applicants with autism. But I also believe that everyone has a responsibility to be considerate to those around them.

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

Filed Under: autism, Behaviour, Discrimination, Expectations, Meltdown, Special Needs 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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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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More Than Just A Toy

May 2, 2013 By

It is snowing outside, but it is almost too warm in the speech therapist’s office. None of us really wants to be there. Not me, not George, not even, I suspect, the speech therapist. George – three years old and non-verbal yet defiant – has refused to remove his coat even though he must be getting toasted under all of those layers.

He sits down unwillingly, and I position myself between him and the door to prevent any escape attempts. I settle in to watch what will undoubtedly be yet another fruitless session. We’ve been coming here for almost a month now, and George has not responded to a single thing. His speech is no further along than it was to begin with, and although I like the therapist very much, a part of me is wondering what the point of all of this is.

As usual, George is making niggling whiny noises, not-quite-crying noises, little sniffles and moans that make it abundantly clear that he does not want to be here. He doesn’t care for any of the toys that the therapist is producing out of nowhere, like a magician. He doesn’t care for toys, period, but the therapist patiently insists that it’s just a question of trying until we find the one thing that will work.

As George starts to noisily rock his chair back and forth, I sigh inwardly, but following the therapist’s early instructions, I do not say anything. I am tired. I am sad. I am frustrated. I suddenly find myself having to blink back tears that threaten to spill down my cheeks.

And then… a miracle.

The speech therapist puts Mr. Potato Head down in front of George.

It is love at first sight. Instantly, the rocking stops and the whiny noises are replaced with a stunned silence. I can literally see my child’s eyes filling with wonder. It’s like witnessing a rain shower on a parched desert.

Instinctively, I hold my breath and stay completely still. I just know that something special is happening, and I don’t want to ruin the moment.

George reaches out shyly and touches Mr. Potato Head. Then his entire face – his entire soul – erupts in the biggest, most beautiful smile I’ve ever seen.

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From that moment, George started making progress at his speech therapy sessions. Thanks to Mr. Potato Head, his vocabulary started to explode. Not only that – he finally had a toy he was interested in playing with. Not staring at, not lining up according to colour, but actually playing with. When friends and family members asked what they should get him for birthdays, we had something we could tell them.

Six years have passed since that day in the speech therapist’s office, but George’s devotion to Mr. Potato Head has never wavered. He collection takes up two large Rubbermaid tubs – and those are just the Potato Heads that are not adorning his desk, his bed, and other flat surfaces at various points throughout the house. He has Mr. Potato Heads, Mrs. Potato Heads, Baby Potato Heads, Darth Tater, Indiana Jones Taters of the Lost Ark. There’s a hockey player Potato Head, a pirate Potato Head, a doctor, a fireman and a sheriff. George has an entire Potato Head community that keeps on growing.

Earlier this week, Mr. Potato Head celebrated his 61st birthday. This is one of the most iconic toys of the 20th Century, right up there with Barbie and Lego.

But to George – and to his grateful mama – Mr. Potato Head will always be more than just a toy.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Mr. Potato Head, Special Moment, Special Needs, Speech, Speech Delay, Speech Therapy Tagged With: , , , , , ,
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Team Sports and Autism: A Not-Impossible Dream?

March 1, 2013 By

One of the most poignant moments in George’s early childhood happened when he was four. It was a late summer’s day, about four months after he had been diagnosed with autism, and I was picking him up from daycare. On nice days the daycare staff took the children out to the playground at the end of the day, and parents would pick them up from there. This was one of those days.

I stood at the fence enclosing the playground, and for a few minutes I watched the kids at play. Five or six children, all around George’s age, lined up for an impromptu little race. Ready, set… GO! And off they went, for just a few yards. George stood by himself under a tree, watching these events shyly.

A sense of sadness tugged at my heartstrings. Although he was surrounded by children, he looked so utterly alone in that moment. The other kids weren’t excluding him, he just didn’t know how to join in.

Because this was so soon after George’s diagnosis, I was still mourning the loss of what I had thought family life would mean. That vision had included childhood birthday parties and Little League baseball teams. And seeing my kid standing there alone, not looking as if he would ever participate in anything – well, it hurt.

As George has navigated his way through nine years of life, I have been heartened to see how well other kids have responded to him. He has this aura about him – this sweet pureness – that seems to attract other children. While many nasty comments have been thrown his way by adults, I have never seen a child being mean to him.

Not once.

I am too realistic – or perhaps too jaded – to believe that this will continue. I have spoken to parents of teenagers with autism, and I have heard speeches given by adults with autism. And with very few exceptions, there is one common thread running through everything I have heard: high school is hell for people with autism. That is when the bullying starts, when kids with special needs get picked on and subjected to humiliation.

If that is the case, though, how do you explain this very cool thing that happened last summer when I was out for a leisurely walk with my family? The boys down the road – 15 or 16 years old – were shooting hoops in their driveway. As we walked by, the ball rolled into the street, and George picked it up. Like a true basketball player, he bounced the ball off his knee, and then threw it towards the hoop. He missed by a mile.

And with no hesitation whatsoever, these teenage kids – you know, the ones who are supposed to be mean to special needs kids – lowered the hoop so that George to join in.

Parents of kids with autism are very fond of talking about how society discriminates against their kids, and to an extent, this is warranted. George and I have both been on the receiving end of stares, rude comments, assumptions and accusations. But these have come from adults.

Maybe a segment of society is starting to get it right, though. There will always be high school bullies, but maybe the upcoming generation is growing up to be more intuitive to the needs of individuals with special needs.

Someone posted this delightful video on Facebook this week. Sit through the annoying ad at the beginning, and then grab a Kleenex and take a look. This is the kind of thing that gives me hope for my child’s future.

High school basketball player passes ball to mentally challenged player on the opposite team

(Photo credit: StuSeeger. This picture has a creative commons attribution license.)

Filed Under: autism, Inclusion, Special Needs Tagged With: , , , , , , ,
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GUEST POST: Back Into The Stride

June 7, 2012 By

In March, I received an email inviting me to participate in the Health Activist Writers Month Challenge hosted by WEGO Health. “In for a penny, in for a pound,” I thought, and signed up. I had never participated in a month-long blogging challenge before and didn’t really know what to expect. I thought that maybe my readership would increase slightly. Perhaps I would come across a couple of blogs that interested me.

I didn’t anticipate becoming immersed in an entirely new (to me) community of bloggers. During the challenge I read many blog posts that were humourous, surprising, heart-wrenching, thought-provoking, informative, or just downright good. I have been fortunate enough to keep in touch with some of the writers, and I remain an active participant in the goings-on at WEGO Health.

One of the writers I “met” during the challenge is a woman who has much in common with me. She is the parent of an individual with special needs. She is also a runner, and therefore totally gets why the highlight of my weekend was going out to buy a new pair of running shoes.

Today, Gretchen Stahlman tells us about her train of thought as she returns to running after a break.

 

I hadn’t run in about a month, the longest stretch since I started running distance six years ago. I normally run three or four times a week, depending on what I’m training for. Last December I started training hard for the half-marathons I ran in the spring. I had a good base from running the NYC marathon in November and I wanted to capitalize on that, plus I wanted to keep myself motivated through the dark, cold winter months. And it worked: I had a PR at my half in March, and I felt like I was really coming into my own in running. But by the end of April when I ran my last half, my body and my mind were too tired to do what I wanted them to do.

Soon enough I’ll start training for the Chicago marathon, so the month of May was a good time to rest and recover and finally address that twangy right hamstring. When I traveled to Denver on business, I purposefully didn’t take my running gear so I’d be forced to take the time off. As it turns out, I liked resting. And I’m pretty good at it (better at it than running). So I took another week off. I stretched my hamstring and, amazingly, it got better when I wasn’t running on it. So I took another week off. I decided that I would run again when I felt like it. Day after day, I didn’t feel like it.

Then last week, my mind got stuck while working on a new essay. In writing, there is the required butt-to-chair time when the words manifest themselves on the page, but for me, I also need running time that frees my mind to go where it will while my body churns away at the miles.

I made my triumphant return to running last Saturday. Just three miles and I knew it would be hard, making me wonder how I had ever run 26.2 miles before and how I would ever do it again. I ran with a new friend on a route I like a lot, one that takes us on the canal path where there are always other runners, owners walking dogs, couples strolling with cups of coffee. We ran smoothly over the brick sidewalk, saying good morning to those who came our way.

A white haired man in old-school running gear came our direction, not terribly fast and with a little lurch in his stride. His left hand held his right arm to his chest as he ran, and when we drew closer, I could see that it was shriveled to half the density of his left. I said Good morning as we passed, and then Wow to my friend when the man was out of earshot. Wow, she said back.

When my friend slowed to walk, I ran on by myself. Now free of conversation, my thoughts drifted to my son who is 22 and only recently diagnosed with Asperger’s although he’s been this way his entire life. He hit a dark skid last fall where he stayed in bed all day, didn’t shower unless told to, didn’t go out, shrank back from the difficulties of the world. That’s when we sought professional help, that’s when the diagnosis came, and now he’s getting out of bed and doing a few things on his own, more each week, a slow stuttering rise to a new life. The social interactions are hard for him, going new places, doing new things, but equally hard to go old places and see people he already knows. But he’s doing it. He’s putting himself out there, making the effort, like the old man who has found his own way to run, holding himself together, not letting what he can’t do prevent him from doing the things that he can.

The route I ran turned down a dirt road and then along a short stretch of trail. The wet of the morning grass come through my running shoes. The trees arched over the path, dimming the sun, muting the world. When I picked up my right foot to clear the rocks and roots, that old achy hamstring sang out like an old friend. The path ended and I turned onto the road, the one that lead me back to where I started. My first run was done, not as hard as I thought it would be. It felt good to be back, in both mind and body, ready to begin my own arduous climb to the marathon.

To learn more about Gretchen Stahlman, check out her website!

(Photo credit: Gretchen Stahlman)

Filed Under: Aspergers Syndrome, Gretchen Stahlman, Guest Posts, Injury, running, Special Needs, WEGO Health, Writing Tagged With: , , , , , , , ,
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GUEST POST: It’s A Marathon, Not A Race

June 4, 2012 By

The first time I met Jennifer Krumins, she was having a fight with her laptop. She was slated to give a parent education presentation at George’s autism therapy centre, and she couldn’t get her technology to work. She endured some good-natured heckling from the front row (read: from my husband), got her PowerPoints to work, and went on to deliver a riveting presentation.

Jennifer is an autism parent, educator and author. She willingly shares her hard-earned wisdom for the benefit of parents who may be feeling a little overwhelmed by the whole special needs gig. Thanks to what I have learned from her, I have become somewhat good at advocating for my son in the school system without alienating anyone along the way. Whenever I start getting my annual IEP-related panic, I start posting stuff about it on Facebook in hopes that Jenn will respond with a gem of wisdom, and she always does.

Since the first time I met Jenn, I have attended more of her presentations and roped my mom into filling out a questionnaire for her book entitled Autism and the Grandparent Connection (which you really should read, even if you’re not a grandparent). We have become friends and we’re looking forward to having a drink together at this year’s autism symposium that Jenn will be presenting at.

Today, she tells us about her journey as an autism parent, and offers us some advice to help us along the way.

I don’t run marathons. I really admire people who do. I have some friends that train faithfully and test their endurance over the course of a few hours…by choice!

I am the parent of a sixteen year old boy with autism. Biggest marathon of my life. Yes, raising a child with autism is perhaps the supreme test of endurance. And yet, like many of my running friends, I would sign up to do it again because in my memory, the moments of success were far more remarkable than the moments of pain, exhaustion and heartbreak.

So what are the secrets of our successful marathon? Is it a medicated state of euphoria that I am experiencing….only to be rudely awakened by reality when the meds wear off?

No. I can honestly say that while the road has been long, harrowing at times and I have fallen on my butt on many an occasion…the journey has delivered far more emotional, intellectual, spiritual and social growth than our family could have dreamed.

The secrets have been revealed to me through fellow “autism marathoners,” trial and error, and most of all through the wisdom of children with autism (my own son and those students whom I have had the privilege to teach). I have learned some valuable tips to enrich the journey and increase endurance:

1. Instead of carb loading…try optimism loading. It’s very good for you and your child! Optimism is a way of looking at life and its inherent stresses. Being an optimistic person does not mean that one is always happy and peppy… it is that you choose to look for opportunity in the middle of adversity. Feed your brain with daily/hourly reminders that adversity is temporary, and that your child is making progress (even if it’s tiny steps). “Children learn what they live,” and as the adults in a child’s life it is our responsibility to model an attitude of positive persistence and hope. We can choose to believe that there is hope, meaning and joy within any given moment.

2. Take a long term approach to training. You would not be able to run your first marathon immediately after deciding to do so. You need to train. It’s the same thing with raising your child. Too often, we get stuck on a panic button in the early years. We may feel like we have to do it all right now in order to win the race against autism. It doesn’t work that way. Live in the present but plan for the future. Each day, each hour that you invest in being the kind of parent you want to be has a cumulative effect. In the long run, it is the lessons of perseverance, self- advocacy, and hope that will develop your child’s ability to be resilient and to ignite a sense of self- worth and self -confidence. Children learn by doing….by failing and trying again. They do not gain self- confidence when we tell them they can do it….and then we do it for them. The values you live by will be the greatest gift you give your child with autism….more than any treatment/intervention.

3. Visualize and rehearse the route. What are your long-term goals for your child? What do you envision for your child in the future? Design your plan so that you not at the mercy of someone’s map. Take the time to write down your thoughts on the following: What are my child’s strengths, skills, interests, challenges and limitations? What about my child gives me the most joy? What are my biggest fears or worries? What goals do I value for my child’s development? What specific behaviours, or other problems, have I observed? How did I react? What did I do in the situation? What could I do better next time, if anything? Have I recently noticed any changes in behaviour or ability? Be prepared to share what you know with those who are on the journey with you (even if you don’t like them). But remember, your plan must be in writing.

4. Talk with folks along the way, enjoy the course, smile often. The autism marathon is a social event. Too often we try to do it alone and we burn out. We need each other. We even need the people that drive us nuts because they keep us running; trying to learn more, be more and advocate more. Choose not to allow bitterness, resentment and hatred ruin the journey. We are the ones who suffer (as do our children) when we allow destructive feelings to shape us. Advocate one step at a time, one person at a time with patience and humility. The journey is much richer when we allow others to help. It is a sign of strength and selflessness to say, “Yes, I could use your help.”

5.  Set goals. Work to achieve them and stay focused on the things you want. Your life does not wait until you “fix” the autism. This is it. Treat your life as the gift it is. The time is now to take figure out what you will be living in the next five years (ten and twenty). Start with small steps towards those goals. Catch yourself if you are waiting to live your life. Perhaps, autism is in some way a vehicle for achieving those goals. Seize the time and model for your child what it looks like to live a goal directed life.

The marathon continues. There are more times of peace now…but never for too long. Struggle creates a rich environment for personal growth. Just set your eyes and heart on the target and keep putting one foot in front of the other.

To learn more about Jennifer and the books that she has written, check out Autism Aspirations.

(Photo credit: Jennifer Krumins)

Filed Under: autism, Coping Skills, Guest Posts, Jennifer Krumins, parenting, Special Needs Tagged With: , , , , , , , , , , ,
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