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Autism Advocacy: 8 Survival Tips For Parents

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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.

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Autism, Advocacy And Hope

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.

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Product Review: Peace Of Mind With TRiLOC

One of the biggest concerns of most autism parents is the safety of their kids. People with autism – both young and old – are a flight risk. They can wander away, driven by motivations known only to themselves, and end up dead or seriously injured. Autism itself does not affect a person’s natural lifespan, but statistics show that people with autism are more than twice as likely as the general population to die of accidental causes, because of their tendency to wander off and get lost.

Thanks to companies like iLOC Technologies, the world is becoming a safer place for people with autism. iLOC has created a mobile personal emergency response solution called TRiLOC, which comes in the form of a GPS tracking watch worn by the individual with autism. A parent or caregiver can then track the movements of the individual using a secure website or a Smart phone app.

The TRiLOC GPS Watch

The TRiLOC GPS Watch

Although it is somewhat bulkier, the TRiLOC has the appearance and functionality of a regular watch. Because of its size, it is designed more for adults than children, but it does come with a spacer that can be attached to the strap to make it fit more snugly on children. Even with the spacer, the TRiLOC is probably not viable for children younger than about nine, since a child with a small hand would be able to slip it off. In any case, the bulk might make it too heavy and uncomfortable for very young children.

The strap fitted with a spacer

The strap fitted with a spacer

When I was told, before receiving the TRiLOC, that the clasp on the strap is childproof, I had my doubts. My child with autism has overcome many things claiming to be childproof, including just about every babyproofing device we tried to install in our home when he was born. However, the TRiLOC definitely lives up to this claim. The clasp is difficult for a typical adult to manipulate, never mind a child with autism. Not only that, it is lockable, and a sturdy cover clips over the top of the lock. I can close and lock the clasp and feel complete confidence that my child will not be able to get it open.

A lockable clasp makes this childproof

A lockable clasp makes this childproof

Before putting the TRiLOC on my son, I wanted to first use it myself to test the functionality. I had some initial trouble using the tracking app on my phone, but the man at iLOC Technologies was extremely helpful in getting me set up. Once I was sorted out, I discovered that I can locate the TRiLOC immediately, at any time, simply by tapping the “Find Me” button.

Map zoomed out for security

Map zoomed out for security

The app can be set up to notify you of the TRiLOC’s location every 60 minutes (default standby mode), every 10 minutes, or every minute (emergency mode). Notifications can come in the form of a text message to one or more cell phones, or an email to one or more email addresses. I have my alerts set up to go to both my text messages and my inbox. Alerts are also logged in the app itself, where they stay until they are cleared.

In addition to the basic alerts, you can set up the app so that you get notified about specific events, for example, the clasp being opened or the individual falling. The alert that really excites me, though, is the overspeed alert. You tell the app what the threshold speed is, and as soon as the TRiLOC starts traveling above that speed, you get notified. You can also set up the app to immediately go into emergency mode when the overspeed alerts kick in. Then you get minute by minute notifications of where the TRiLOC is, complete with full hyperlinked GPS coordinates.

Another nifty feature is the geofence. On the app, you simply select a central point and draw a circle around it. If the TRiLOC leaves that perimetre, you get a notification. Up to four geofences can be set for one device. We have one set up around our house and another set up around my son’s school. The geofence notifications can be turned on and off as needed.

After a period of rigorous testing, the TRiLOC definitely gets my stamp of approval. Right now, we are in Phase II of the testing, which involves my son wearing it on a day to day basis. A follow-up review will be posted, in which I will describe his experiences and those of his teachers and other caregivers in using the TRiLOC, and in which I will talk about more features that haven’t been described here.

In the meantime, it should be noted that although I am describing how TRiLOC can be used for individuals with autism, it can be a lifesaving device for people with other conditions as well. If you are the caregiver for someone with any developmental or neurological disability, TRiLOC is well worth considering.

This is an original post by Kirsten Doyle, published in accordance with my disclosure policy. A TRiLOC unit was provided to the author in exchange for an honest review. All photos are credited to the author.

 

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The Duck Pie Dance

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The nightly Duck Pie Dance starts at about 7:30 p.m., right after everyone has finished eating dinner.

“George, put on your pyjamas,” I say to my firstborn son, who at eleven, currently has the whole puberty-and-autism combination going on.

He stops whatever he is doing to look at me, and then he gets up and locates his pyjamas. He returns to the living room, and then standing directly in front of me, he puts them on. Without first removing his daytime clothes. He stands there looking bulky and rumpled, with an expectant look on his face as he waits for me to follow the script.

“George,” I say obligingly, “Take off your clothes, then put on your pyjamas.”

He takes off the pyjamas but keeps his clothes on. With a look of devilment in his eyes, he holds the pyjamas and slowly edges toward the door that separates the living room from my husband’s office. At a snail’s pace, he shuffles into the office, pulling the door as he goes. Right before the door is about to close, he flings it open, tosses the pyjamas onto the living room floor and dashes into the office, slamming the door behind him. Through the closed door, I hear him giggling hysterically.

“George,” I yell, pretending to sound stern. “Put your pyjamas on!”

He comes back into the living room and flops down in front his computer, pretending to ignore me. I get up and stand in front of him, wordlessly pointing at the pyjamas that are still lying on the floor where he threw them. He picks them up and puts them on, this time taking off his clothes first.

I sit back down, knowing that this is not over. George wanders around for a few minutes, playing on his computer, making words with his alphabetic magnets, playing a few notes on the keyboard. I turn my attention back to whatever I was doing.

Five minutes later, I hear his voice right beside me.

“What happened, George?” he says in an astonished tone, as if he’s reprimanding himself. I look up, and he’s standing there wearing nothing but his undies. I sigh and roll my eyes.

“What happened, George?” I ask, mimicking him. He giggles and runs away. No matter. He’ll be back thirty seconds from now. Or two minutes, or ten minutes – whenever he’s ready. You can’t rush these things.

When he does return, he has his pyjamas on upside down. Yes, you read that correctly. There is a way to put pyjamas on upside down, and my son has discovered it. He has put one leg of the pyjama pants over his head and the other down one arm. His legs are in the sleeves of the pyjama top, which he is holding at the waist.

“Duck pie!” he yells gleefully, with a gleam in his eye.

“Duck pie! Duck pie! Duck pie!” he chants as he prances around the house. He laughs as if it’s the funniest thing in the world, and we all laugh right along with him, not only because it is indeed the funniest thing in the world, but because he has the most delightfully infectious laugh.

Eventually, the Duck Pie Dance comes to an end and George puts on his pyjamas properly. He goes to bed and sings to himself for a while before drifting off to sleep, and I smile to myself, already looking forward to tomorrow’s performance.

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

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Ice Buckets For Autism

The Reason I Run

The Reason I Run

Yesterday, I spoke about the aspects of the ALS Ice Bucket Challenge that bother me. At the same time, I acknowledged that this campaign has been wildly successful in raising funds and awareness for ALS. Although I have been nominated, I have declined to participate – not only because of the reasons stated yesterday, but because there is another cause that is nearer and dearer to my heart. I am not in any way diminishing the ALS cause, I am just saying that with my limited funds and more limited energy, I have to focus my efforts on a cause that directly impacts my family.

Every year, I participate in the Charity Challenge of the Scotiabank Toronto Waterfront half-marathon to raise funds for autism services, and this year is no different. The money I raise goes to the Geneva Centre for Autism, a wonderful organization that has provided endless support not only to my autism boy, but also to his younger brother, my husband and myself. I can say without reservation that my son’s life – all of our lives – would be very different if it weren’t for the Geneva Centre.

The thing is, though, that fundraising is hard, and it gets more difficult every year. People struggle. They have difficulty paying their bills on time and providing for their families. Life in this day and age is not easy. And the people who do have funds to donate are increasingly selective about where that money goes, and rightfully so. There have been so many stories about donated funds lining the pockets of people who are already rich.

I can give my personal assurance that money donated to the Geneva Centre for Autism does not go towards ridiculously high salaries or swanky events. It is used for things like art supplies and musical instruments for kids with autism, job skills training for those leaving school, iPads for those in need of communication assistance, and summer camps for children and youth who need help with social skills development. This is money that is used to help real children and their families. It is money that genuinely makes a difference and can change the course of a young person’s life for the better.

This year, for those who do have a few dollars to donate, I am adding an element of fun to my fundraising efforts. It is a variation of the ALS campaign, and I am calling it “Ice Buckets For Autism”. The premise is simple: for every $100 that I can raise for autism, I will dump a bucket of ice water on my head. In keeping with my concerns about using water wisely, I will dump it in such a way that it can later be used for something else.

There are no nominations and there is no stipulation as to how much each person should donate. People can simply donate if and how much they choose, and every time the hundreds digit of my fundraising total changes, I will drench myself and provide photographic and video evidence of the act.

I am hoping to be drenched many, many times.

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

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Autism Is No Excuse

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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.

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Why Parents Of Newly Diagnosed Kids Should Stay Away From Google

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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:

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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.

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The Flea In The Bottle

George and his dad, enjoying the concert

George and his dad, enjoying the concert

A long time ago, I heard a story about a flea that was put into a bottle. Since fleas are capable of jumping something like 30 times their own body length, the lid had to be put onto the bottle in order to contain the flea. Whenever the flea jumped, it dinged itself on the bottom of the lid, and eventually it figured out how to jump to a level just below the lid. After a period of time, the lid was removed, and the flea was free to go. But by now, it could no longer jump high enough to escape from the bottle. The physical capability was there, but the flea had the expectation that if jumped any higher, it would get hurt.

The story is a metaphor, of course. It’s supposed to illustrate the idea that we perform not according to our abilities, but according to the expectations we have, that are put there by ourselves or by someone else.

When George was diagnosed with autism seven years ago, I promised myself that I would never put a lid on my expectations of him. I would ensure that he had whatever opportunities he needed to learn and grow, and to discover what he might be capable of.

This strategy has not always been easy to follow, but it appears to have been reasonably successful. Over the years, periods of rapid progress have alternated with disheartening plateaus. Lately we have been experiencing the latter, and my husband and I have been having some depressing conversations about George’s limitations.

In the midst of all of this, my other son James has been preparing for his school’s spring concert, which happened this evening. In the past, we have left George at home with his grandma on occasions like this. Sometimes crowds and excitement overwhelm him, and we don’t want to stress him out or wreck things for James. Tonight, however, Grandma was unable to watch George, so we had to bring him with us.

While we were standing outside the school waiting for the doors to open, George was already getting antsy. My husband and I spoke about which one of us would leave with him, and which one would stay behind to watch James. In the end, we decided to see how long George would last for, so we went in and took a seat.

The concert started with the 8th Grade band. As soon as the music started, a huge smile appeared on George’s face, and he started swaying in time to the beat. He briefly clapped his hands over his ears when the drumming started, but for the most part he stayed calm. He even started singing along when the band played We Will Rock You.

The folk-dancing act that James was participating in was quite late in the program, and throughout the whole concert, George was sitting calmly, listening to the music and clearly enjoying himself. From time to time he would bop up and down in time to the music.

When James and the rest of the folk dancers came out, I scooted to the other side of the auditorium to get a clear shot with my phone’s video camera. While the dancing was going on, I turned my head to see how George was doing. To my astonishment, he was standing beside his seat, trying to imitate the moves of the dancers. As his hat-bedecked head bopped and jived in time to the music, my husband caught my eye and gave me a thumbs-up. For a few moments, I swung the camera around to capture some of his dancing.

We left soon after James was done with his performance. George was brimming with happiness, but we could tell that he was ready to leave. We took the boys to McDonalds to reward both of them for a job well done.

Now, as they settle into bed for the night, I cannot help reflecting on the fact that if my mother-in-law hadn’t had a prior appointment, George would have stayed home and we would have missed the opportunity to see him having such a wonderful time. This has renewed my resolve to keep testing his limits and pushing him beyond his boundaries. I don’t want to put a lid on my expectations of him, or his expectations of himself. I don’t want him to be that flea that is conditioned into lowering its potential.

I want George to dream big, and to fly as high and as far as he dares to go.

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

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5 Myths About Autism That Really Have To Go

 

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.

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Autism Parenting: The End Of An Era

2012-09-24 23.02.15

Three nights ago, I made the excruciating decision to kick my children out of bed. My bed, that is.

To give a bit of background, my kids have always had full and free access to me, at any time of the day or night. When they have woken up in the middle of the night having had a bad dream, or feeling sick or lonely, they have been allowed to get into bed with me and snuggle up. It’s not always comfortable, being squished on both sides by children, but I have always loved it. Because what is better than hugs from your children?

As much as I love it, though, there are downsides. For one thing, my children take up an inordinate amount of space in the bed for such small people. It’s like they morph into starfish at night, and there are arms and legs everywhere, squashing my face and poking into my spine. For another thing, these little people are getting less little. George, who is ten, has reached the same height as my mother-in-law (OK, so she’s a little old lady, but still), and eight-year-old James is getting there as well.

What this means is that these nocturnal cuddles are costing me an enormous amount of sleep, and that makes it difficult for me to both function and be a human being that other people want to be around. In addition to that, George has started showing signs of puberty, and my husband and I have been feeling the need to carve out more time with each other.

We have reluctantly agreed that it is time for the kids to stay in their own beds at night.

James has accepted this with ease, but for George it is a massive change. Kids with autism do not appreciate it when the boat is rocked, and this particular change represents a tidal wave for him. It has been difficult for him, and by extension, difficult for us.

For the first two nights, James was the only person who got any sleep. My husband and I would lie helplessly in our bed, listening to George’s plaintive pleadings. He kept wandering into our room, and I kept taking him back to his own bed. I would get him settled, tuck him in and give him a kiss, and then go back to bed. And then I would do it again. And again, and again, and again.

While all of this was going on, George was whimpering, “I want Mommy. Lie down with Mommy in the bed.” And then, as he got sadder and sadder, he was simply calling my name.

I so badly wanted to cave. I so badly wanted to go to him, lie down with him and wrap my arms around him. But I knew that I couldn’t. In order to make this change, we would have to be persistent and patient, gentle and firm. We would have to just lie in bed and listen to our child being sad.

Sigh.

Last night – the third night – we caught a break. George went to sleep in his own bed, and he stayed there for the whole night. There was not so much as a whimper, not the slightest bit of movement. As much as I like to think that this represented an acceptance of the changes, I am realistic enough to know that the poor child was probably just too exhausted to protest. We may be in for another few nights of sleeplessness, and we will deal with it for as long as we need to.

As parents, it is our responsibility to guide our children towards independence, and this is an important step in that direction, even if, at the end of the day, it is harder for me than it is for them.

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