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Accidental F Bombs

July 14, 2012 By

The first time my younger son James, who had just turned four, dropped an F-bomb, he was out with my husband buying me a new laptop to replace the one that had gone kaput. According to eyewitness accounts (i.e. my husband), the conversation went something like this:

James (sitting in the back with my husband driving): Daddy, can I have a donut?
Husband: OK! Look out for a donut shop and tell me if you see one!
James (ten minutes later): Where’s the f*cking donut shop?

My husband tried to be stern about it, but he had a hard time keeping a straight face. It was one of times where you find something funny but you cannot let on that you find it funny.

Two a bit years later, the word has fallen out of favour with James. He doesn’t understand what it means (at least, I hope he doesn’t), but he does know that certain words are “bad words”. When he hears me slip up and utter a curse word, he tells on me, running to his dad and calling out, “Mommy said a bad word!”

A recent slip-up on my part has created F-bomb issues, not with James, but with my older son George.

Some time ago, George started messing around with the timer on the oven. This in itself is understandable for a boy with autism who likes to have everything just so. If you tell him that something will happen twenty minutes from now, he takes it very literally and makes sure he knows just when twenty minutes will be up. So he goes off and sets the timer on the oven.

This is a problem from a safety point of view. Not only does it mean that he is leaning over burners that may or may not be turned on, but the timer is controlled by the same buttons that are used to actually turn the oven on. There have been a couple of instances where George has accidentally set the oven temperature instead of the timer.

It is a fire hazard, and also a great inconvenience if I happen to have something in the oven and the temperature is suddenly not what  it should be.

We have been dealing with the timer-setting habit with as much sternness as you can employ with a kid with autism. Our “punishment” involves leading him to his room, and making him sit on his bed for a few minutes during which we completely ignore him. Negative reinforcement doesn’t really have an impact on him. It just makes him giggle. No reinforcement at all, however, makes him somewhat disconcerted and uncomfortable.

Anyway, a few weeks ago, my husband called out to me, “George set the timer!”

Without thinking, I replied, “Oh, f*ck.”

Yes, the children were within earshot. It was not my finest parenting moment.

We dealt with the situation as we usually do, and life went on.

Until this week, when George had one of his frequent bouts of echolalia.

For the uninitiated, echolalia is when a child with autism repeats something that he or she has heard, without regard for the context. It can be immediate, where the child repeats what has just been said moments ago, or delayed, where the words are repeated hours or days later.

This was a case of very delayed echolalia. About a month after my F-bomb, George suddenly said, “George set the timer! Oh, f*ck!”

And then giggled as if it was the funniest thing in the world.

And then said it again. And again, and again, and again.

As parents, of course, our instinct is to reprimand the child for saying such a word. And with typical kids, that’s fine. But for kids with autism, it’s a little more complicated. You can tell George until the cows come home, and he still won’t be able to distinguish the bad words from the normal words.

Since we make a big deal of any speech George comes up with in order to encourage him, our best defense is to simply ignore him when he says that word. But it’s so hard, and goes against the grain of what we believe to be “good” parenting.

In the meantime, we are getting George his very own timer – one that has proven very effective in the autism community. Hopefully, it will keep him away from the oven. It’s called a Time Timer, and it looks like this:

How do you deal with your kid coming out with swear words? Special needs parents: what are your strategies? I need them!

(Photo credit of “See, hear, speak no evil”: John Snape. This picture has a creative commons attribution license.)

(Photo credit of Time Timer: Spectrum Nasco)

 

Filed Under: autism, Children, Echolalia, F-Bombs, parenting, Profanity Tagged With: , , , , ,
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Ramblings From The Heart

July 8, 2012 By

It is a lazy Sunday morning and I am trying to keep things low-key. My husband, who almost never drinks alcohol, was out with friends last night, and he has a bit of a hangover that he is sleeping off. My younger son is watching TV and my older son is playing on his computer beside me. I am sipping coffee and seeing if anything interesting has been happening on Facebook while I’ve been sleeping.

It’s pleasantly peaceful. I feel as if all of the pieces of my life are in harmony.

My older son abandons his computer game and comes to stand beside me. He is tall for his age, one of those long lanky kids whose pants never seem to be long enough. I regard this child of mine, this beautiful boy with autism who some higher power has deemed me worthy to parent.

In his sweet, lyrical voice and odd way of speaking, he says, “Go give Mommy a hug.”

I hold out my arms and he clambers into my lap – something that I am going to treasure while he is still just not-too-big to do so. He wraps his arms around my neck, kisses me lightly on my hair, and rests his head on my shoulder. Although neither of us is saying a word, the communication between us is profound and special. Our world of two feels complete.

I am intensely aware of the weight of responsibility. As I hold my child in my arms, I feel as if I am holding his future. Everything I do counts: every word, every gesture, every action. All of the mistakes I make – and in parenting, there are bound to be some – can cause some erosion, some little breakdown somewhere in my child’s character. But all of the things I do right can build him up. I visualize this moment that I am sharing with him right now. I imagine it adding another layer to his confidence and sense of emotional well-being.

Although this beautiful moment will soon be over – already, I am starting to sense my son getting ready to move on to the next part of his day – its effects will last forever.

Sometimes, as I think about the immense role that I have in creating positive, productive and happy lives for my children, a part of me – the part ruled by self-doubt – asks, “Can I really do this? Am I worthy of having such responsibility for two human beings?”

And at moments like this, as my son gets off my lap and goes off in pursuit of some adventure that only he knows about, I can hear the Universe whisper back to me.

“Yes, you can do this. And yes, you are worthy.”

(Photo credit: Kirsten Doyle)

Filed Under: autism, Childhood, parenting Tagged With: , , , , , ,
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Band-Aids and Autism: How my Son Saved the Day

July 1, 2012 By

Several nights ago, right after lecturing my younger son James about keeping fingers away from sharp objects, I sliced my thumb open on the lid of a freshly opened can of tuna.

I made a run for the bathroom and held my profusely-bleeding hand over the sink while James trailed in saying, “Mommy, you really should learn to be more careful.”

I really should, indeed. I’m not at all sure how this even happened. What I do know is that the amount of blood was startling. It was a deep cut, right across the soft padded part of my thumb. I wasn’t really sure what to do about it. I had a full box of Band-Aids, but I didn’t think they would do a great job of stemming the flow. I was out of gauze pads, and George had surreptitiously used up all of my surgical tape to stick bits of paper to other bits of paper.

As I stood at the bathroom sink stupidly watching my blood go down the drain, George – eight years old and autistic – came in with the box of Band-Aids, that he had gotten out of the cupboard without anyone asking him to. He started unwrapping Band-Aids and wrapping them around my thumb. They were instantly getting soaked, but George kept at it, adding Band-Aids down the entire length of my thumb. Eventually, my thumb was trussed up in about twenty Band-Aids. It looked absolutely ridiculous, but the bleeding was contained.

George then added an extra-special touch: he took my hand, and lightly kissed my Band-Aided thumb.

It’s hard to say what aspect of this whole incident is most significant.

George, autism and all, responded immediately and appropriately to what he saw as an emergency. This child, who gets totally freaked out at the sight of blood, showed no more than a little bit of mild distress. He managed to stay completely calm as he bandaged me up. He quietly took charge of the situation in a way that astounded me. The kiss demonstrated tenderness and empathy – just the kind of bedside manner that someone with a fresh injury needs.

It makes me think that I should start teaching him First Aid. If this incident is anything to go by, George seems to have that instinct of calmly wanting to help when someone gets hurt. It could serve us well to empower him to help in situations like this, starting on a small scale, of course. I wouldn’t expect my eight-year-old to perform CPR, but if he had the tools to handle minor First Aid emergencies, that could be good not only for his potential patients, but for himself.

Do you think George’s response to this situation might be evidence of some instinct that he naturally has? What opportunities do you think might arise from this?

(Photo credit: http://www.flickr.com/photos/honan/3779689068/)

Filed Under: autism, Emergency, First Aid, Injury Tagged With: , , , , , , ,
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The Mathematics Of Brotherhood

June 28, 2012 By

2012-05-13_17.58.13

I am fortunate enough to have two children who travel well, at least by car. We have not yet experimented with air travel, but I have a feeling that once we got past the airport chaos and onto the plane, they would be fine. We are not quite ready for that, so for now we are sticking to the road trips.

Last weekend, we drove to Elkhart, Indiana. It’s a journey of about eight hours, which does not include time spent on the border crossing and any pit stops. We planned as well as we could, given that we only had a day in which to plan. I packed up stuff for an en route picnic, and made sure the boys had their favourite toys in the car with them. I even had my laptop handy in case I had to calm them down by playing DVD’s for them.

The drive down could not have gone better. The guy at the border cheerfully welcomed us into the United States, despite my six-year-old informing him that “Daddy always be’s crazy.” Shortly after crossing the border, we stopped for our picnic. Everyone had fun, and there were no complaints as we piled the kids back into the car for the remainder of the drive.

The drive home was a different story altogether. I wouldn’t say it was disastrous, exactly, but it was a little fraught with stress. It started with lost Lego. I wrote recently about George’s Lego, and how it can never, ever be lost.

Right before leaving the Elkhart city limits, we stopped for a leisurely dinner. We ate our food, paid and left. When we had been driving for about an hour, George suddenly started asking for his Lego. This surprised us, since we had assumed he had it with him. We pulled over and couldn’t find the Lego anywhere in the car. A phonecall to the restaurant confirmed that George had left it on the table.

There was no way we were going to force our child with autism to do without the object that is a big source of comfort to him – I mean, he sleeps with his Lego – so we drove back to Elkhart and got it. Disaster was averted and peace reigned once again.

But only for a little while.

By the time we embarked on our return journey, the kids were tired, cranky and overstimulated from a packed weekend. It is understandable that they didn’t feel like spending eight hours stuck in the car. I didn’t feel like spending eight hours stuck in the car.

With about five hours of the drive left to go, George started saying, “I want to go home. I want to be home in ten minutes.”

Well, in the absence of rocket launchers on the car, that wasn’t going to happen. We tried to talk George through his increasing anxiety. Even James, in his sweet way, was trying to comfort his brother.

“Don’t worry, George. We’ll be home tonight.”

Instead of calming down, George was getting more and more anxious, so we did what we always do when he needs to be distracted: we started throwing out math questions at him.

George loves numbers. He’s been able to count to 100 in a variety of increments since he was three, and he was doing multiplication in his head long before anyone taught it to him at school. When he’s asked a math question, he cannot resist answering it. It’s a marvellous way to reduce his stress.

James started playing along and pretty much took over. He was asking George one math question after another. What’s 8 plus 8? What’s 32 minus 7? What’s 5 times 5?

The math questions eventually morphed into nonsense questions. What’s cow plus water? What’s house plus airplane? What’s paper plus shoes?

Every time James asked one of these questions, he provided an equally nonsense answer. By the time this had been going on for a while, the kids were in fits of giggles. Come to think of it, me and my husband were too. It was hilarious.

Then James asked the following question: What’s James plus George?

We all looked at James, waiting for the answer. When it came, it brought tears to my eyes.

James plus George equals love.

(Photo credit: Kirsten Doyle)

Filed Under: autism, Brothers, Elkhart, Indiana, Love, Math, Travel Tagged With: , , , , , ,
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Autism Acceptance Does Not Mean Entitlement

June 14, 2012 By

 

Since my son George was diagnosed with autism five years ago, I have learned – to some extent, at least – how to field the rude comments of strangers and the blatant stares of their children. Through my writing and through daily interactions, I do what I can to educate and inform, to discourage people from discriminating against my child on the grounds that he is “different”. I strive for awareness and acceptance, and I work towards a world in which everyone accepts George for the wonderful, albeit a bit quirky, person that he is.

In this quest I am part of a not-so-secret society of autism parents who have a common goal. We post and share autism awareness messages on our Facebook walls. We circulate articles about what to say and what not to say to an autism parent, and we brainstorm ways to make things easier for our children. In all of this, our message to the world is this: Accept our children, include  them to the extent to which they are capable, and discover what wonderful people they are.

As passionate as I am about this cause, I do believe that if we’re not careful, we can take it too far. We can make the mistake of expecting the world to bend to our children no matter what, without making any effort to equip our children to live in the world.

During my afternoon commute from work, I regularly encounter a blind woman who has a service dog. When we get off the subway, we go to the same bus bay, although she doesn’t take the same bus as me. She waits patiently for her bus, politely asking people to let her know when her bus has arrived. She is so nice and charming, and people practically climb out of their own skins in their eagerness to assist her.

In contrast, there is a man during my morning commute on the subway who is confined to a wheelchair. He is rude and aggressive. He seems to be completely OK with literally pushing people out of the way in his efforts to be first onto the train when it arrives, and he acts as if he can behave as badly as he likes because he is disabled. People are not that inclined to help him and feed his sense of entitlement.

When George has meltdowns in public, there is often very little I can do about it, but that doesn’t stop me from trying. As I try to engage strategies to help him, I offer explanations of autism to anyone who might be nearby. Am I obligated to explain my son’s behaviour? Maybe not. But I do recognize that my son’s behaviour at those times can be disruptive and a little frightening to the people around us who cannot be expected to magically know that he has a invisible disability.

In the vast majority of cases, my explanations are met with smiles and nods of understanding. On the odd occasion, I have even received offers of help. Yes, there are always the people who tell me that I shouldn’t have my child out in public if he cannot control himself, or that my bad parenting is to blame, but there’s very little one can do about people with that kind of attitude.

The point is that the road to acceptance is a two-way street, with some effort required from both sides. It shouldn’t be all up to other people, who in many cases may not know how they’re supposed to act around someone with autism. The individual with autism (depending on the level of functioning) and his or her family should do their part to make things easier too.

When I was on the subway to work one morning, a girl of eleven or twelve boarded the train with her parents. With the sense that autism parents develop as an instinct, I knew that this girl had autism. She clearly had communication deficits, but she appeared to have a reasonable level of functioning in other ways. Since this was during the morning commute, there was standing room only on the train.

The girl lost it. Over and over, with increasing intensity, she screamed, “I want to sit down.”

Bear in mind that although I knew the girl had autism, in all likelihood the other passengers didn’t. Why would they? Autism is not a visible disability. To most of the people on the train, that girl was simply a brat acting out. Her parents did not offer any explanations, nor did they make any effort to stop the screaming or help their daughter.

As the screaming escalated to an ear-splitting “I! WANT! TO! SIT! DOWN!” a woman close to where I was standing gave up her seat to the girl, who instantly calmed down. No-one thanked the woman who had given up her seat: not the girl, and not her parents. The woman, quite justifiably, was annoyed. She said something to the girl’s mother about manners, and the girl’s mother made some obscure comeback about a commuter’s responsibility to give up their seat to people with disabilities. The woman shook her head in bafflement and moved towards the opposite end of the carriage.

I didn’t mind that the girl had started melting down over the lack of seats. People with autism do not have control over what triggers them.

However, I do mind that her parents expected everyone else to accommodate her without offering an explanation, and I mind even more that they allowed the situation to escalate without trying to help her. I believe that in their lack of action, they did a great disservice to the autism community.

The next time any of those commuters encounters a child having a meltdown in a public place, how understanding are they likely to be? Does this kind of thing not reinforce all of the negative stereotypes about autism that we are trying so hard to beat?

We (autism parents) spend a lot of time talking about how we wish people would accept our kids. But we cannot really expect someone to accept something when they don’t even realize there’s something to accept.

Is it acceptable for people to be rude and discriminatory towards individuals with autism? Absolutely not. That doesn’t mean, however, that everyone has an automatic obligation to cater to us and our children, no matter what, without a little bit of effort from our side.

We have to meet the world halfway on this one. Working with society, not against it, is ultimately what will build awareness, acceptance and inclusion.

(Photo credit: Kirsten Doyle)

Filed Under: Acceptance, autism, Discrimination, parenting, Society Tagged With: , , , , , , , , ,
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2012 Run For Autism: Starting The Journey

June 10, 2012 By

Many of you already know the story.

You already know how I was a runner way back when, and then stopped and completely neglected my physical health after the birth of my kids. You know how I always wanted to get back into running, but never found the discipline. You know how I became completely comfortable as a couch potato but never quite got rid of that residue of regret.

You also know how an email landed in my inbox one day that completely changed everything. The email was an invitation for me to join the team being put together by the Geneva Centre for Autism for the forthcoming Scotiabank Toronto Waterfront races. Participants could run the 5K, half-marathon or marathon, and in the process raise funds for services for children and youth with autism.

It turned out to be just the motivation I needed. Within 24 hours I had made the transition from couch potato to speed demon extremely slow runner. Six months later, I had dropped almost sixty pounds and I was standing exhausted but triumphant at a half-marathon finish line, clutching my finishers medal and sobbing with emotion.

Here I sit, three years later, getting ready to embark on training and fundraising for my fourth Run for Autism. Since that first half-marathon in 2009, most of the weight has stayed off, my half-marathon time has improved by almost ten minutes, and I have raised over $2000 for the Geneva Centre for Autism.

This year’s race is on October 14th. My fundraising goal is a cool thousand dollars. This means that for the next four months, I will be shamelessly asking people for money – friends and family, complete strangers, and everyone in between. The money will go towards supplies and services for children and youth with autism. These are services that can provide skills that will last a lifetime, enabling people like my son George to lead happy, productive lives as fully integrated members of their communities.

Some examples of what $1000 can do are as follows:

  • Art supplies for 40 children and young adults
  • Sports equipment for 20 children and young adults
  • Musical instruments for 15 children and young adults
  • Job training for 15 young adults
  • Field trips for 10 children and young adults
  • Summer camp for 4 children and young adults
  • 2 iPads loaded with apps for individuals with autism
  • 1 piece of state-of-the-art sensory equipment

This list goes to show that every single cent really does make a difference. If you have the ability to, please consider sponsoring my Run for Autism and contributing to this incredible cause for my child and for other people with autism.

To donate, please visit my fundraising page.

It takes a very special kind of village to raise a child with special needs. Today, I invite you to be a part of my village.

(Photo credit: Brightroom Professional Event Photographers)

Filed Under: autism, Autism Services, Finish Line, fundraising, Geneva Centre for Autism, Half-Marathon, running, Running for Autism, Scotiabank Toronto Waterfront Races 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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Sticks And Stones And Words That Hurt

May 31, 2012 By

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Special needs parents come with all kinds of super-powers, one of them being the ability to grow a thick skin. This is a necessary part of survival: without it, we would not be able to withstand the stares from strangers during public meltdowns, the judgmental comments that are designed to make us feel like bad parents, and the mothers who steer their children away from our kids in the park, as if autism were contagious.

These things never really stop hurting. They never fail to make our hearts ache for our beautiful children who through no fault of their own, are targets of ostracism and discrimination. As we grow into our roles as special needs parents, though, we learn coping skills. We come up with ways to shield our children from the hurt, and to let the strangers know that our kids have a place in this world, differences and all.

We learn how to accept that the blatant looks and rude comments are not a reflection on us as parents. They are a reflection of the ignorance and prejudice in other people.

But.

No matter where we are in our special needs parenting journey, nothing can prepare us for the first time someone maliciously refers to our children as “retarded”.

Although this word was originally used in a medical sense, it is now generally regarded as a derogatory term, especially when the intent is clearly to hurt either the child or the parents. As conventional wisdom states, “It’s not what you say, it’s how you say it.”

Today marks the fifth anniversary of my son George’s autism diagnosis. I guess it is a cause for celebration: not only have we survived for this long, we have seen great strides along the way.

It is also the first – and hopefully only – day on which someone referred to George as our “retarded son”. It happened in the early hours of the morning during a telephone argument between my husband and someone else. There is no doubt that the words were spoken with malicious intent.

George was asleep, so he was spared the pain of hearing himself referred to in this way. The hurt behind the words had to go somewhere, though, and it slammed into me, almost leaving me breathless, and then settled over my shoulders like a heavy cloak.

Several hours later, I am left with a knot in the pit of my stomach that won’t go away, and unshed tears that I am trying with all my might to contain.

As I try to prepare my son for life in the big wide world, I worry about what the big wide world is going to throw at him. Will it be a place of opportunity for him, or will it be a minefield of insults and discrimination?

Do I try to shield him from the hurt, or do I let some of it get through to him so he can learn how to protect himself?

How do I ensure that my son will be OK, that he will be happy and feel safe, in the days when I am no longer here?

Filed Under: 2012 Wordcount Blogathon, autism, Bullying, Discrimination, life, parenting, Respect, Special Needs, stereotyping Tagged With: , , , , , , , ,
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Emerging Into The World Of Books

May 30, 2012 By

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

My younger son James was just over a year old when his big brother George was diagnosed with autism. As we adjusted to our new reality and tried to figure out what we were supposed to do for George, we anxiously – almost obsessively – watched James for signs of a delay. We scoured developmental checklists and asked George’s speech therapist how James’ speech should be progressing.

Thanks to our family doctor’s initial refusal to give us a referral, George’s diagnosis came a full year after it should have. Every time I thought about the year of missed interventions, I felt sick. I did not want history to repeat itself: if James had autism or anything else, I wanted to know about it right away.

Fairly early on, it became apparent that we didn’t have anything to worry about, at least from an autism point of view. James’ speech development was slightly ahead of the curve. He hit the “terrible twos” right on target, and his interactive play skills showed up right when they should have.

When James started going to school, it felt kind of strange to just install him in a regular classroom instead of having to go to special ed review meetings and haggle over the wording in IEP’s (Individual Education Plans).

School was not without its challenges for James, though. In Ontario, the age cutoffs run on the calendar year. Children start Junior Kindergarten the year they turn four, whether they celebrate their birthdays in January or December.

James, being a Christmas Day baby, was very young when he started school. He was almost four months shy of his fourth birthday, by far the youngest and smallest kid in his class. He had not developed the coping skills that most of his classmates had, and for the first few weeks he cried almost every day.

The Kindergarten teacher was a kindly man who took James under his wing during that initial period of adjustment. He made sure the other kids weren’t too rough with him, and found imaginative ways to help James not only adapt to school, but to enjoy it. James adored the teacher, and by Halloween of that year, he looked forward to going to school every day.

Along with a number of his classmates, James suffered a setback when the teacher unexpectedly died just before Christmas of that year. He didn’t even really know what death meant, and he seemed to take it a bit personally that the teacher had “left” him.

But James is as resilient as the next kid, and he bounced back. By the time he reached the beginning of Grade 1 he was on track again.

Or was he?

Shortly after James started Grade 1, I noticed that his reading did not seem up to scratch. It’s not like I was expecting the kid to read War and Peace, but he was not mastering even the most basic of words. He was almost six and could do little beyond identifying the letters of the alphabet, whereas George had been reading fluently by the time he was four and probably would be able to read War and Peace.

James’ inability to read was not for lack of trying. The poor child tried gallantly to make sense of the strings of letters. I started wondering if he had dyslexia, like his dad. If this was the case, I wanted to know right away, knowing that early intervention would be the key to success.

I spoke to James’ teacher, who confirmed that he was reading below grade level.

“Let’s see where he’s at by the end of this school year,” she advised.

Immediately, I balked, remembering how George’s autism diagnosis had been delayed because of a doctor who said something very similar. I told the teacher why I was reluctant to procrastinate, and she was quick to reassure me.

“Trust me,” she said gently. “Many first-graders don’t really get reading until close to the end of the school year. And remember, if James had been born just a week later, he’d only be in Kindergarten right now.”

Where every fibre of my being had known that our family doctor was wrong about George, something told me to have faith in James’ teacher. And so I waited.

Within weeks of that conversation, James was starting to make progress – not in giant leaps, but in baby-steps. He was reading simple familiar words. It was highly encouraging, although he still got frustrated when he couldn’t figure out the longer words.

One day about two weeks ago, James’ teacher excitedly pulled my husband to one side when he picked James up from school.

“James flew through his spelling test today and he got them all right! I think something may have clicked!”

James himself was glowing from his accomplishment. All of a sudden, he had the confidence to really try to read. He started spelling words like Wednesday and vegetable. He developed a sudden interest in making words with George’s alphabetic fridge magnets (much to George’s chagrin).

James is still reading slightly below grade level, but it is increasingly likely that he will catch up by the time school lets out for the summer. His teacher was right on the money.

And I get to celebrate the accomplishments of not just one child, but two.

I feel like the luckiest, proudest mom on the planet.

(Photo credit: http://www.flickr.com/photos/bagelmouse/4700001481. This picture has a creative commons attribution license.)

Filed Under: 2012 Wordcount Blogathon, autism, Children, Dyslexia, Education, Progress, Reading, School, Special Needs Tagged With: , , , , , , , , , ,
post

Making Peace With A Tough Choice

May 29, 2012 By

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

When I went for my six-week postpartum checkup after George was born, my OBGYN raised the question of whether my husband and I were going to have more children. We stared at each other in a perplexed kind of way, shrugged our shoulders and said, “I dunno.”

It was a question that we had honestly given no thought to. George had been an extremely welcome surprise, but he had been a surprise nonetheless. Family planning hadn’t exactly been a key feature in our lives.

When we did talk about it – this topic that we had simply never thought to discuss – we discovered that both of us had always envisaged life with three children. This was good. I thought it was a positive sign that I was with a man who wanted the same number of children as me.

When we decided to try for Baby Number Two, I got very serious about it. I downloaded those free online calendars that tell you what the best dates are to – well, you know. I was going to chart my cycles and keep track of my temperature to tell when I was ovulating.

As it happened, I didn’t need any of that stuff. Just six weeks after we decided we were officially trying to conceive, we got a big fat plus sign on the pregnancy test. Several months after that, James came barreling his way into the world like a cannonball.

Two down, one to go.

By the time we were ready to try for Baby Number Three, though, things had gotten complicated. James was almost two, and George, who was four, had been diagnosed with autism. We were recalibrating our lives after discovering that we were special needs parents, and I was still trying to find my way out of the terrible darkness of postpartum depression.

What if our third child had autism? Would it be fair for us, knowing that we weren’t going to be around forever, to leave James with the responsibility of having two siblings with special needs?

We were so conflicted about whether or not to have another child that we went to see a geneticist. The DNA testing did not confirm a genetic link to autism, but it did not rule it out either. The geneticist turned to the very detailed questionnaires that we had completed. Based on my own developmental history, which was almost identical to George’s, it seemed not only possible but likely that I was on the spectrum myself.

The geneticist advised that in spite of the inconclusive DNA test results, there was reason to believe that George’s autism might be genetically based. We were looking at a 12-15% probability that any other child we had would have autism.

This created a problem. My husband and I found ourselves on opposite sides of the fence. He was very concerned about the 15% probability. I, on the other hand, tried to focus on the other percentage: the 85% probability that the child we had would not have autism.

We flip-flopped back and forth for several months, torturing ourselves with possibilities and what-ifs. We were torn between doing what was right for the kids we already had, and doing what both of us had always wanted. We really could have done with a crystal ball at around that time.

In the end, it was more than George’s autism that made the decision for us. I was already at an age where there’s a higher risk of having a baby with Downs Syndrome. I was finally starting to see a pinprick of light at the end of the postpartum depression tunnel. We had just successfully potty-trained James, and I wasn’t sure that I wanted to start a new two-year cycle of diapering.

Most importantly, I realized that I didn’t need more children. The two that I had were absolutely perfect. When I came home from work at the end of each day and hugged them, I felt complete. I did not feel that there was piece missing – a piece that would be filled by another child.

When I am sitting on the floor in my living room, with one kid on my lap and the other jumping on my back, I know that we made the right choice. I know that my family is whole.

Have you had to wrestle with the question of whether to have more children? What was the deciding factor for you?

(Photo credit: http://www.flickr.com/photos/joehowell/2282930348/. This picture has a creative commons attribution license.)

Filed Under: 2012 Wordcount Blogathon, autism, Choices, family, Genetics, parenting, Siblings, Special Needs Tagged With: , , , , , , , ,
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