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What I Hope

April 9, 2013 By

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I hope that George knows I will always support him in whatever he wants to do, and that I will never see his autism as an obstacle.

I hope that when I am weathering the challenges of autism with George, I am acting in a way that helps him instead of hindering him.

I hope that James knows I understand how tough it must be, being the sibling of a child with autism.

I hope that James knows how immensely I value him as an individual in his own right, and that he is not defined by virtue of being George’s brother.

I hope that George knows he is not defined by autism, but that autism is just one part of who he is.

I hope that the moments of weakness that I have – those times when my desperation and sense of being overwhelmed spill over – do not undermine my kids and cause them lasting damage.

I hope that my better moments – the laughter and the hugs and the words of encouragement – build up their confidence and self-esteem.

I hope that I can always be the kind of autism mom who never gives up a fight, no matter how hard and scary it can be.

I hope that when I talk to strangers about autism, or when I write about it, I am doing so in a way that will help both of my kids as they navigate their way through life.

I hope that I will have the courage to stand up to anyone who ever tries to hurt my kids.

I hope that my kids know that when autism parenting just gets too hard for me to handle and I need to spend time by myself, it’s not because of them. It’s because of my own fears and insecurities that I want to protect them from.

I hope that my kids know I love them without reservation, without boundaries, and beyond the ends of time.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Children, Health Activist Writers Month Challenge, parenting Tagged With: , , , , , , ,
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13 Signs That Cats Have Autism

April 8, 2013 By
Murphy

Murphy

1. They have poorly developed social skills and little interest in playing with other animals.

2. They have great problem solving skills. If they want something, they will find a way to get it.

3. They’re not big on empathy, but they can be very loving towards those who are close to them.

4. They won’t sleep at night if they don’t want to.

5. When they’re not sleeping at night, they’re doing whatever they can to keep you awake.

6. Understanding what they want often involves a combination of guesswork and luck.

7. They can make you laugh when you least expect it.

8. They will lash out and scream bloody murder if you try to cut their nails.

9. They will lash out and scream bloody murder if you try to get them to swallow a pill.

10. If you try to give them a bath, you will often end up with more water on you than they do.

11. They won’t play with the toys you buy them, but they’ll find new and exciting uses for a piece of string.

12. They have a superhuman ability to focus for long periods of time on things that interest them.

13. When they snuggle up to you with absolute love and trust, that is the best feeling in the whole world.

(Photo credit: Kirsten Doyle)

Filed Under: Animals, autism, Cats, Health Activist Writers Month Challenge Tagged With: , , , , , ,
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A Letter To Autism

April 6, 2013 By

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Dear Autism,

Although we were only formally introduced to one another six years ago, we have really known each other for longer than that. I didn’t realize it at the time, but you came into my life 9 years, 7 months and 4 days ago, on the day of my son’s birth.

You were there throughout his infancy, staying up with me during the late-night feedings and diaper changes, looking over my shoulder as I tried to figure out what was making him cry, and watching as I tentatively navigated those uncertain months of new motherhood.

You were there during his toddler years, and it was then that you really started to make your presence more obvious. You guided those tiny little hands of his as he repeatedly spun the wheels of toy cars without actually playing with them. You got him interested in that piece of string that he spent hours and hours examining. You choked his language skills and made sure he wouldn’t be interested in playing with other kids.

I didn’t know your name yet, but I knew you were there. I felt as if you wanted my beautiful boy all to yourself. You didn’t even want to share him with me. I hated you and felt threatened by you.

On the day the doctor told me your name, I cried. The doctor said that you would have control of my son forever, that he would never be able to achieve anything because of you. Hearing that broke my heart.

When I was done crying, I made a decision. I was not going to let you win. I was not going to let you ruin my son’s chances to have the best life possible. I knew that I would not be able to get rid of you, though. So we were going to have to learn to live with each other, you and I. Maybe we would even have to become friends.

And so, instead of trying to beat you down, I tried to find ways to work with you. You weren’t going to let my son learn in the ways that other kids learn, so I found people who would teach him in ways that you would like. You weren’t going to make it easy for him to talk, so I had to start at grass-roots level and show him ways to communicate in your presence, in ways that you would allow. You didn’t want him to enjoy playing with other kids his age, so me and my family became his playmates, teaching him how to play without letting you take the fun out of it.

As we have gone through all of this together, you and I, I have made the most astounding discovery. There are actually things about you that I like. You have accelerated the development of whatever part of my son’s brain is responsible for math. In blocking those quote-unquote “normal” ways of thinking, you have opened up his mind to thinking in ways that are unique and incredible. You have given him the ability to single-mindedly focus on a task until it is done just the way he wants it. Because of you, my son is determined and hard-working, and does not believe in giving up.

Best of all, you have touched my beautiful child with his own special brand of magic. He has an innocence and pureness of spirit that makes him light up the space around him. Because you make him think in such a unique way, he has a quirky sense of humour that brightens up the lives of those who are near him. He has a fierce love for me, for his dad, and for his little brother.

You have given me a special gift as well. You have taught me how to appreciate the little things. Every word, every sentence, every little baby-step of progress is a cause for celebration. I have learned how to be happy in the most adverse circumstances.

I cannot go far enough to say that I like you, Autism. But without a doubt, there are things that I respect about you, and while you have made my life so hard and heartbreaking in many ways, you have enriched it in other ways.

I have come to terms with the fact that you will always be there, and I think by now you know that I’m not going anywhere, and I am not letting you get the better of my son. I like to think that for the most part, we can peacefully coexist. There are undoubtedly days when you win, and there always will be.

But you will never stop my son, because he is unstoppable, and because he has a family who will fight for him tooth and nail, every step of the way.

Yours truly,

George’s Warrior Mom

(Photo credit: Kirsten Doyle)

Filed Under: autism, Health Activist Writers Month Challenge, parenting Tagged With: , , , , , , , , , , , ,
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If I Could Do Anything…

April 5, 2013 By

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Imagine for a moment that we live in a world where anything is possible. Money is no object, there are no stupid politics to get in the way, and logistics are never an issue.

If I could do anything…

… all children with autism would receive autism intervention therapy, be it IBI, Floortime, or any other methodology.

… all children with autism would have IEP’s that truly address their goals, and teachers who actively help the child work towards those goals.

… all siblings of children with autism would have access to programs and activities just for them, so that they could have fun with other kids who understand what it’s like.

… all autism families would get to go on vacations to autism-friendly places, where the parents could get an occasional break.

… children and teens with autism would never be bullied.

… every kid with autism would have easy access to sensory equipment, like swings and weighted blankets.

… every kid with autism would have a dog.

… big box stores like Wal-Mart would have “quiet” shopping areas, where the fluorescent lighting is less harsh, there are fewer people and the checkout areas aren’t so intimidating.

… ditto for airports, which would also provide special boarding for autism families.

… all autism parents would have the financial means to attend conferences and parent training and information sessions.

… autism parents would stop bickering over the causes of autism and judging each others’ vaccination and nutritional choices.

… the general public would have easy access to information about autism that is realistic and devoid of sensationalism.

… people with autism wouldn’t wander off and later be found dead – everyone would be safe, always.

… people with autism would have the same opportunities as anyone else to reach their full potential, whatever that might be.

… autism parents would be able to grow old without constantly worrying about the future, because they would know that their kids would be taken care of.

… no-one would believe that ridiculous myth that people with autism are incapable of emotion – everyone would be hugged by someone with autism at least once in their lifetime, and they would cry from the absolute beauty of it.

Filed Under: autism, Health Activist Writers Month Challenge Tagged With: , , , , , , , ,
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5 Websites That Every Autism Parent Should Bookmark

April 4, 2013 By

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If you are the parent of a child who has recently been diagnosed with autism, you’re probably floundering a little bit. You are going through a major reality shift, and you are wondering, What next? My biggest piece of advice for parents in this situation is to avoid the temptation to Google “autism”. That is a sure recipe for information overload, which can compound any feelings of helplessness and anxiety that you may already be experiencing.

Give yourself at least a couple of weeks of breathing space (or longer – my doctor imposed a Google ban of 30 days, which I am absolutely convinced helped me enormously). When it is time for you to start looking up stuff, start with the following information. It will not only help you now, it will stand you in good stead throughout your autism parenting journey.

1. http://www.wrightslaw.com/  Wright’s Law is aimed at parents in the United States who have special needs kids in the special education system. Although a lot of the information is specific to American laws, a great deal of it applies elsewhere. This site will give you some very good information and resources about your child’s rights, and your rights as a parent.

2. http://www.tdsb.on.ca/ If your child is in the Toronto District School Board, this is the site you want. If not, look up the website of whatever school board your child is being, or will be educated in. Once you have found the site, navigate to the Contacts page and bookmark that. It is likely to contain the phone number of at least one individual whose job it is to deal with special education matters.

3.  http://www.hc-sc.gc.ca/hc-ps/dc-ma/autism-eng.php This is the Health Canada resource site for autism. Most governments have sites like this, and they include fact sheets, and information that is specific to where you live, like funding and services that are available.

4.  http://www.autism.net/resources/about-autism.html The Geneva Centre for Autism provides some good information about what autism is and what it means to families who are affected. You can use this not only for yourself, but to pass on to friends and family members who you feel could benefit from the information.

5.  http://www.edu.gov.on.ca/eng/general/elemsec/speced/speced.html If you’re in Ontario, you need this site. If you’re elsewhere, look up the site that contains information about special education laws and processes in your jurisdiction. This will tell you what you and your child are entitled to and how to navigate the maze of educators and policy-makers, what forms to fill in, what you can request, and much more.

As a bonus, here are a few posts I have written in the past that may be of help to families affected by autism.

1.  Tips for parents whose kids have just been diagnosed. http://www.runningforautism.com/2012/11/17/new-autism-diagnosis-5-tips-for-parents/

2. Some possible early signs of autism (emphasis on “possible” – typical kids may experience some of these as well). http://www.runningforautism.com/2012/11/08/five-early-signs-of-autism-my-familys-experience/

3. A fantastic guest post by autism parent and educator Jennifer Krumins, on how to approach life as an autism parent. http://www.runningforautism.com/2012/06/04/guest-post-its-a-marathon-not-a-race/

4. Tips for parents who feel a little lost when it’s time to draft an Individual Education Plan. http://www.runningforautism.com/2011/10/25/10-iep-survival-tips-for-parents-of-children-with-autism-2/

5. How to keep your neurotypical children safe and reassured when their sibling is having an autism meltdown. http://www.runningforautism.com/2011/09/10/autism-meltdowns-six-strategies-for-helping-siblings/

 (Photo credit: Sonia Belviso. This picture has a creative commons attribution license.)
Filed Under: autism, Autism Diagnosis, Health Activist Writers Month Challenge, parenting, Resources Tagged With: , , , , , ,
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5 Things This Autism Parent Wants You To Know

April 2, 2013 By

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1. When we tell you that our child has autism, don’t say you’re sorry. We know you mean well, but why should you be sorry? We’re not. Autism parenting can be as tough as hell, but we adore our kids, and like any parent, we do everything we can for them.

2. Autism is a neuro-processing disability. It is not an intellectual disability, although the symptoms may or may not include cognitive impairments. Don’t assume that a child with autism struggles intellectually, but at the same time, don’t assume that everyone with autism is like Rain Man.

3. If my child is in the room, any questions you have about him should be addressed to him, not to me. Don’t ask me how old he is or what grade he is in at school. Ask him. Afford him the same respect you would give to any child. He may not be able to answer all of your questions, but he has to have the opportunity to try. If he needs prompting, I will help him. But always operate under the assumption that he can, not that he can’t.

4. I don’t expect society to bend over backwards for my child. He is a child with autism living in a neurotypical world, and we are doing our best to give him the skills he will need in order to survive. He is always going to be different, though. He will never fit any mould of what people may think someone “should” be like. What I ask is that you embrace and accept those differences.

5. It is a very sad fact that the autism community is fragmented by different beliefs, and sometimes those fragments attack each other. Moms who choose to vaccinate their kids are accused of being bad parents. People actively campaign against autism organizations that do not promote a certain agenda. Insulting terms like “sheeple” are flung around. All of this really bothers me, because we should have a common goal – that goal being a better life for our kids. That should be what we are aiming for, over and above everything else.

Filed Under: autism, Health Activist Writers Month Challenge Tagged With: , , , , , , , , ,
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12 Reasons You Know You’re An Autism Parent

March 29, 2013 By

SAMSUNG

1. Your son will defend to the very last his right to wear his hat at all times. Even while he’s sleeping.

2. When you’re cutting your child’s nails the neighbours come over to ask whose kidney is being forcibly removed.

3. If the coffee machine is moved one gazillionth of an inch to the left, World War III becomes a real possibility.

4. Your nine-year-old can fix any computer problem you throw at him in about three seconds.

5. You want to ask the Mythbusters team to investigate whether “full night’s sleep” really exists.

6. Your child has 237 Mr. Potato Heads and they are lined up according to the colour of their hats.

7. The transition from winter clothes to summer clothes and vice versa has to be planned like a military strike.

8. Your son doesn’t have a teacher, he has a team.

9. You bond with your kid by stimming with him.

10. You throw a party to celebrate when you catch your child telling a lie.

11. You throw a party to celebrate when your child drops an F-bomb in the right context.

12. If your kid has to give a urine sample, he then thinks he has to pee in a jar every time.

Filed Under: autism, Children, Humour, parenting 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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Autism and Bedtime: 11 Steps For Not Going Completely Insane

February 2, 2013 By

 

The Hyperactive Neurotypical Child

Since the beginning of time, when Adam and Eve got talked into eating an apple by a psychotic snake, women – and to a lesser extent, men – have been pondering the same question. It is a question that crosses all geographic, ethnic, cultural and religious boundaries, one that unites mothers in a way that nothing else can.

How am I going to get this child to sleep?

When there’s a child with autism in the family, that question crops up with frightening regularity. It becomes an automatic response to just about everything. Here’s a typical conversation between husband and wife while the kid with autism bounces on the ceiling like a yo-yo:

Husband: What should we have for dinner tonight?

Wife: How am I going to get this child to sleep?

Husband: Ummm. I don’t know. So, dinner. What do you think? Chinese takeout?

Wife: Sure, sure. How am I —

Husband: Do you want chop suey or chow mein?

Wife (sobbing): How am I going to get this child to slee-eee-eeeeeep?

Husband (fumbling awkwardly with takeout menu): OK, I’ll just order something.

For you autism parents who are feeling a little desperate, I offer you my Bedtime Survival Tips.

1) Make sure you have wine. You won’t need it for the bedtime ordeal itself, but it will a great reward for you to give yourself if when the kids get to sleep.

2) About two hours before bedtime, sweetly ask the fruits of your loins to put on their pajamas. You’ll have to ask both of them about a gazillion times before they comply, so the more lead time you give yourself, the better.

3) An hour before bedtime, calmly talk to the Hyperactive Neurotypical Child and ask him to put on his pajamas. If When he argues on the grounds that his brother doesn’t have pajamas on, explain to him that you need him to lead by example. Bribe him with a donut.

4) Send your husband out to buy donuts.

5) Repeatedly tell the Autie to put on his pajamas, with your voice gradually increasing in pitch and panic. Right before you hit your breaking point, sob with relief when you hear your husband return with the donuts. Armed with your confectionary currency, coax your kids into their pajamas and then give them their reward. Fail to care when they wipe their gooey hands all over the fronts of their nice clean pajamas.

6) Sergeant-Major the kids into the bathroom one at a time to pee and brush their teeth. Do the Autie first. If you do the Hyperactive Neurotypical Child first, the Autie will head for the hills and you won’t see him until next Christmas.

7) Get the kids their bedtime milk. Remember to break a Melatonin capsule into the Autie’s milk, otherwise he will spend the entire night gleefully and vigourously rubbing the top of your head.

8) Channel the days when you used to herd cats and get your kids moving in the general direction of their rooms. Naively believe the Hyperactive Neurotypical Child when he says he’ll quietly try to go to sleep.

9) Kiss the little darlings goodnight and retreat into the living room. If When one of them makes a sudden appearance by your side, calmly shepherd them back to bed.

10) Repeat Step Nine 84 times.

11) When there has not been any activity for three geological eras, you can safely assume that the kids are asleep. Pour some of the wine from Step One into a glass and drink. If you’re feeling really frazzled, cut out the middleman and just drink straight from the bottle.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Bedtime, Children, Humour, parenting Tagged With: , , , , , , ,
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Ten Little Teddy Bears And Other Echolalic Utterings

January 25, 2013 By

About six years ago, when my older son was almost 4, I got all excited when I heard him say the phrase, “Ten little teddy bears.” He had virtually no vocabulary in those days, and he almost never spoke. And here he was, uttering a four-word phrase. This was indeed a cause for celebration.

Of course, this happened in a simpler time, when everyone assumed that my son had nothing more than a speech delay. The word “autism” had only made it into my personal orbit as a possibility to be in complete denial about. What? Autism? No way! He just has a speech delay, he’ll catch up!

When we got the autism diagnosis, we found out about echolalia, defined by Wikipedia as “the automatic repetition of vocalizations made by another person.” All kids do it at some point, but most outgrow it. Kids with autism keep at it with admirable dedication, sometimes for years and years. The words being repeated may change, but the concept remains the same.

Ten little teddy bears stayed with us for some time, eventually giving way to phrases related to Bob the Builder and Mr. Potato Head.

I used to think that as the frequency of George’s contextually correct speech increased, it would edge out the echolalia, but that has not been the case. George definitely talks more. He has an extensive vocabulary, and although he hardly ever talks in a social context and still cannot participate in a conversation, he does make requests using full sentences. There is plenty of room for George’s contextual speech to coexist with echolalia.

Over the years, we have been treated to song lyrics, phrases from YouTube videos, sentences uttered by teachers and things that have been said at home.

“Bob dropped the eggs. What a mess.”

“I need Dizzy, Lofty and Muck.”

“No pushing, no kicking, no hitting.”

“Well it’s a sunny day. I feel brand new.”

Some of the echolalia is charming, and it’s thrilling to hear my child utter any words at all. But it is a little disheartening to know that a lot of what he says does not have any meaning or context behind it.

The latest echolalia is not charming. It takes the form of a single word – a word that I would not use on this blog if it weren’t a pivotal part of the story.

Fuck.

I freely admit that it is my fault. Although I try my best to be aware of my choice of words when the kids are around, from time to time I slip up with the F-bombs. It happens rarely, but the kid only has to hear a word once.

At first it was simple repetition, and we responded in the same way we’ve responded to all other echolalia: by ignoring it. Sure, it wasn’t fun to listen to this word being said over and over ad nauseum, but for a while, the best reaction was no reaction at all. Many autism experts agree that any response at all, even a negative reaction, can be perceived by the child as positive reinforcement.

This tactic lost its effectiveness when George got wind of the fact that fuck is that most tempting of things: a Bad Word.

We are now dealing with a child who gleefully yells, “Oh FUCK!” and then runs away in fits of giggles.

Ignoring it no longer works. You know that persistence and single-mindedness that many people with autism display?

Yeah. George’s ability to laughingly repeat the word is greater than my ability to ignore it.

Reprimands don’t work, and in fact, just aggravate the situation and make it funnier from George’s perspective.

The only thing left is the dreaded removal of privileges. I really don’t want to go this route because there will be a meltdown for sure, but I may not have a choice.

Unless, as someone on Facebook suggested, he actually uses the word in context. If that happens, I might just throw a party.

How do you handle inappropriate language in your typically or not-so-typically developing children?

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

Filed Under: autism, Echolalia, parenting, Speech Tagged With: , , , , ,
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