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Autism Diaries: On This Day…

February 2, 2016 By
the autism boy

The Autism Boy

Thirteen years ago I was pregnant. The pregnancy was so new that nobody knew about it apart from me. I remember lying in bed hugging this secret close to me, this secret that I was sharing with no one but the baby growing inside me. I was terrified that my husband and I would experience a repeat of the loss we had been through just a few months previously. Stay with me, I silently begged the baby.

Twelve years ago I was a new mom. I spent time lying on a blanket with my months-old babe, holding his tiny hand in mine. I would look at his little fingers, at the curve of his cheek, and the fluttery eyelashes – and I would marvel at how something so small could be so perfect. I felt as if the future was a blank slate, just waiting to be written by this brand new human being.

Eleven years ago, I was a parent who had recently lost a parent. I held my one-year-old son, feeling immense gratitude that he had spent some time in his grandfather’s arms. I was afraid: when I lost my father, I lost a bit of my security. I somehow became more of an adult, and I wasn’t sure that I was ready for that.

Ten years ago, my little family had gained a new member. As I cared for my newborn baby, I worried about his older brother. I knew that something was not right, but the doctor said, “Wait. Give it some time.” When your instincts say one thing and your doctor says another, you have to decide which one to listen to. I listened to the wrong voice and waited.

Nine years ago, we had finally gotten the doctor to listen, and our firstborn son was on the waiting list for a developmental assessment. We didn’t need an assessment to know that something was wrong, but we were hopeful that whatever it was, it could be fixed. While we waited, we took our son to speech therapy and celebrated every single word that he uttered.

Eight years ago, my husband and I were trying to settle into our roles as autism parents. The initial shock of the diagnosis had worn off, and we were working our way through the labyrinth of government funding and services. At the same time, we were adjusting our dreams and goals to fit the new reality of autism.

Seven years ago, our autism boy was about to start his ABA therapy. It was a world that was completely unknown to us, a form of intervention that works for some kids but not others. Would it work for our boy? We had no way of knowing. A further assessment put him on the severe end of the autism spectrum, but we were urged not to lose hope.

Six years ago, we were one year into the ABA therapy, and we had seen our son make phenomenal progress. His vocabulary had exploded and we were starting to see the emergence of some amazing qualities. A follow-up assessment showed that he had made 23 months’ worth of gains in a 12-month period. Hope sprang eternal.

Five years ago, the boy was slowly, slowly being phased out of ABA therapy and into full-time school. We worried about whether the cessation of therapy would stall the progress we had seen him make. We were advised to expect a temporary plateau followed by slow but steady progress. Anything could happen, we were told. A full decade of school remained. A lot can happen in ten years. I held onto my rose-coloured glasses.

Four years ago, I suffered a devastating loss when my beloved aunt died in a freak accident. For the first time since the death of my father, I had to go away without my family. Leaving my husband and boys was excruciating, but I knew that I was needed on the other side of the world. The autism boy coped well with this big upheaval, helped enormously by his incredible little brother.

Three years ago, my stubborn optimism started to give way to realism. Yes, my son had many capabilities. He was doing well in his special ed program, and he was able to do things by himself, like get dressed and use the bathroom. He had come a long way since the days of his diagnosis. But there was still a lot that he couldn’t do. For the first time, I started to realize that in all probability, my boy would never attain complete independence.

Two years ago, we had to fight for our boy. The special ed programming at his school did not continue beyond Grade 6, and the placement he was slated for filled us with the horrors. The classroom – indeed, the entire school – was overcrowded and staffed with well-meaning but overwhelmed teachers. As I walked the hallways during my one and only visit, I detected an aura of barely contained hysteria. We were not going to risk the years of progress we had seen. And so, with my son’s principal by our side, we started a long series of meetings with the school board. And once again, we waited.

One year ago, the principal of my son’s school called with the news that the battle had been won. A special ed program for Grade 7 and 8 kids was being brought into his school – a school where the general student body forms a protective and loving wall around the special ed kids. I cried with joy, not only for my son, who was getting another two years in this amazing environment, but for all of the kids whose paths we had had a part in altering for the better.

Today, my son is in Grade 7, in his first year of the newly implemented program. He is doing well and continuing to make progress. I am happy with where he is, but I am afraid of where he is going. Because unlike the day of his diagnosis, when we had years of time ahead of us, we are now very close to the future we talked about then.

One year from now, the boy will be months away from finally leaving the security of the only school he has ever known. We do not know where he will be going for high school – that chapter of the story is starting to be written now. In the next few months – a full year ahead of when this would happen for typical kids – we will be starting to visit high schools, interview principals, look at special ed programs.

This year, next year, and for the rest of our lives, we will continue to do the best thing for our autism boy, to give him the opportunities he needs to reach his full potential – whatever that potential turns out to be.

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

Filed Under: Assessment, autism, Autism Diagnosis, Education, School, Special Education Tagged With: , , , , , , , , , , , , , , ,
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Ontario Education: Open Letter To The Teachers At My Sons’ Schools

June 15, 2015 By

3196112204_8903a3cdce_zDear teachers,

There are many people who think you have a cushy job, with seven-hour workdays and two months off every summer. They say that you are overpaid, underworked, lazy and uncaring. Any time there is a labour dispute in the Ontario education system, like there is now, you are accused of trying to suck the taxpayer dry in order to line your own pockets.

Let me tell you what I think, teachers.

I think you guys totally ROCK.

Since my firstborn son started school in 2007, I have gained an appreciation for just how hard you work. I have come to understand that your workdays extend far beyond classroom hours, that report cards and IEP’s involve a lot more than simply punching data into a computer, and that a great deal of thought and time goes into the lessons you teach and the projects you assign.

Being a teacher is HARD. You have to juggle the needs of your students, the demands of their parents and the rules of the Ontario education system. While you understand that other people sometimes have bad days, you are on your game all the time. You spend your days doing a job that most people wouldn’t want for all the money in the world – which is kind of ironic, considering that many think you should be paid less.

While people across Ontario have been hating on you for pursuing your right to do your jobs properly, you have kept going, helping my boys learn and grow, giving your work the same dedication and focus that you always have.  Here are just a few of the things you have been doing, over and above teaching my kids.

* You have taken my son and rest of the track and field team to their competition events. Even now that the competitions are over, you are still showing up at school early so that those kids who want to continue their morning runs can do so.

* You have taken your eighth grade classes on their graduation trips, and you have been hard at work planning extra-special graduation days for them.

* You came to school early one morning on a day that you were not assigned to teach, just so that you could fulfil your before-school yard duty and ensure the safety of my son and his friends.

* You hefted a cardboard box out of your car one Monday morning, and when I asked what it was, you said that it was projects you had graded over the weekend, as well as materials for an upcoming student assignment that you had prepared and photocopied on your own time.

* You dug around in your classroom searching for a book that you knew my son would enjoy reading during the summer.

* You organized a water play day for the younger kids, and you allowed my son and his classmates to help run it, so that they could develop their leadership skills.

* You have not gone to bed before midnight for the last week, because you’ve been putting together picture slideshows and videos for your Kindergarten class’s graduation celebration.

* You have been tirelessly working on ways to help my autism boy develop his speech and communication skills, and you have been helping him develop life skills that will take him far beyond the classroom.

Here’s a little something that I know about you, teachers. You don’t just do this for the money. You do it because you truly care about the kids you are teaching. This is more than “just a job” for you. When you go to work every day, you are not simply earning a paycheque. You are shaping futures and opening up worlds of opportunity for my boys.

I will miss getting report cards for my boys this year. I will miss reading your carefully thought out commentaries on what their last term of the school year has been like. It will be strange to not see their grades for each subject.

But I understand why you’re not doing them. I understand that you are taking on a government that wants to choke the Ontario education system and make it more difficult for you to teach my kids effectively. There are people who are trying to claim that this is all about money and benefits, but I know that is so far from the truth that it might as well be on another planet.

I know that right now, you are not fighting for yourselves. You are fighting for my children. You are fighting for the future of our society.

For that, I thank you. Stay with the fight, teachers. And when you hear or read about parents criticizing you for taking a stand, know that there are parents out there who completely support you.

Sincerely,

A grateful parent

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

Filed Under: Education, School, Teacher, Teaching Tagged With: , , , , , , , , , ,
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In Defense Of Ontario’s Sex Education Curriculum

May 10, 2015 By

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I was educated at a girls-only Catholic school run by nuns. Our sex education was fairly basic and had a singular message: we weren’t to have sex, or engage in any physical contact with boys. When we did start having sex – only after marriage, of course – the only form of contraception we could use was the rhythm method. Every sperm was sacred, and all of them had to be given a chance. Sex was there for procreation only. If we could manage to avoid enjoying it, so much the better.

The concept of “safe sex” was never taught – why would it be, when abstinence was the word of the decade? Our sex education did not comprehensively cover the area of consent, and if anyone had even mentioned respect for gay rights, the nuns would have had a heart attack.

The simple truth is that we were not told enough, and we suffered for it. I mean, we knew about the mechanics of sex. Most of us had mothers who did a good job of preparing us for menstruation, and we knew that if the sperm hit the egg, pregnancy would result. We had a good grasp on the biology of it all. But sex is so much more than biology, isn’t it?

No-one thought to tell us about body image and self-esteem – if anything, we were all encouraged to be skinny so that we could appeal to the boys we were forbidden from having physical contact with. We were given no information about how to reduce our risk of sexually transmitted diseases, or where to access birth control. Any discussion about rape was centred around two themes: how we had to make sure we didn’t “ask for it” (the clear implication being that rape victims were responsible for the crimes committed against them – an attitude that is frighteningly prevalent even today), and how abortion was not acceptable even if the pregnancy was a result of rape.

When I look back at the quote-unquote “sex education” that I received at school, I cannot help being utterly befuddled by the current spate of protests against Ontario’s sex education curriculum. If me and my peers had had access to the information being taught today, many of us might have been better equipped than we were to navigate the world of sex and relationships.

Those protesting the Ontario sex education curriculum are tossing around some statements that are either untrue or unreasonable. Here are some of the prizewinners and my responses:

They are teaching young children how to consent to sex. No, they are NOT. They are teaching young children that nobody has the right to hug them, touch them or have any kind of physical contact with them without their consent. They are teaching them how to tell what kind of touching is never OK, and what they should do if they find themselves in a difficult situation. They are teaching them that they, and they alone, are in charge of their bodies.

They are giving graphic information about sex to grade schoolers. Sorry, but teaching a child the proper terms for their genitals does not count as “graphic information about sex”.

Sex education is the job of parents, not the schools. Some kids are fortunate enough to have parents they can have completely frank discussions with. Others have parents who tell them nothing. Most kids fall somewhere in the middle. Their parents have the best intentions, but they – the kids – need to be able to talk to another trusted adult about some delicate issues. Having an organized sex education curriculum ensures that all kids have access to information that is really important. Besides, what would you rather have? Kids learning from people who are trained to teach them, or kids learning from each other and from Google?

They are teaching kids about masturbation. Look, it’s not like they’re giving illustrated how-to manuals to Kindergartners. They are merely teaching young adolescents that exploring their bodies is a normal part of life and that it’s not something to be ashamed of. Quite frankly, what they’re teaching about masturbation now is less graphic than what they taught four or five decades ago.

The sex education curriculum needs to be respectful of our religious freedoms, and we believe that homosexuality is a sin. Actually, no, the curriculum does not need to be respectful of “religious freedoms”. It needs to be consistent with the laws of Canada, which prohibit discrimination on the basis of sexual orientation.

But it’s wrong to teach that homosexuality is normal. Our kids are growing up in a society that has many versions of “normal”. There are traditional households with a man, a woman, two-point-four children and a dog named Rover. There are single moms and single dads, blended families, gay parents. We live in one of the most diverse societies in the world, and our education system has to reflect that.

I don’t see why I have to subject my child to this sex education curriculum. Ah, but you don’t. You have the choice to opt your children out of the sex education curriculum. You have the choice to make your child sit alone in the library while his or her peers are learning about the realities of life.

What are your views about sex education? If you live in Ontario, what do you think of the curriculum?

This is an original post for Running For Autism by Kirsten Doyle. Photo credit: QuotesEverlasting. This pictures has a creative commons attribution license.

Filed Under: Children, Education, parenting, School, Sex Education
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Autism Advocacy: 8 Survival Tips For Parents

April 13, 2015 By

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

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

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

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

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

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

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

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

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

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

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

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

April 12, 2015 By

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

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

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

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

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

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

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

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

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

Filed Under: Advocating for Another, autism, Education, School, Special Needs Tagged With: , , , , , , ,
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In Pursuit Of A Dream

January 17, 2013 By

When I finished high school 25 years ago, I had the idea that I would become a research psychologist. I was interested in the clinical aspect of it, but I did not think it would suit my socially awkward personality. If I went into research, though, I would be able to satisfy my desire to try and figure out what makes people tick. In some small way, I might even be able to make the world a better place.

I graduated high school with good grades and went off to university to pursue a Bachelors degree with a psychology major.

You know how life has this way of barging in and messing up all your plans?

Life barged in and messed up all my plans. During my second year at university, I met someone who I initially thought was charming, but who turned out to be a chaotic and disruptive force. I compare that part of my life with a tsunami. A gigantic wave rushes in and knocks over everything in its path. When the water recedes, the landscape is completely different. Some things have been turned upside down, others have completely disappeared. Virtually nothing is recognizable, and the only way to move forward is through a process of recovery and reinvention.

One thing is clear: after such a disruption, nothing can ever be the same again.

I did finish my Bachelors degree, but I abandoned the dream. I did not have good enough grades to pursue further studies, and even if that weren’t the case, my sense of self had been so completely obliterated that it would not have been possible.

In the 20-odd years since then, a lot has happened. I spent some time drifting, both metaphorically in my own mind and literally through travel, and eventually washed up in a career. I moved to Canada, had children, got married. I have buried my father, been thrust into the role of special needs mom, started running and discovered a passion for writing.

I have a lot to be thankful for, including the fact that in spite of the storm that I endured all those years ago, I have managed to make a life for myself. There has always been an undertone of regret, though. Regret for the poor decisions I made back then, and regret for the fact that I had a dream that got swept away. While the career I did end up in has been pretty good, I have never been able to shake the feeling that this is not what I want to do, that I have been living my whole adult life in response to things that happened a long time ago.

Maybe I cannot pursue the dreams I had back then. Maybe those dreams belong in the past along with all the ugly stuff that happened there.

What about new dreams, though? Is there anything stopping me from pursuing them?

In a move that has surprised absolutely no-one except myself, I have made the decision to go back to school. I have enrolled in a post-graduate certificate in fiction and non-fiction writing, and this will be followed up with a Masters degree in creative writing.

It is daunting. Quite apart from the extra time commitment that this will involve, my mind keeps drifting back to how my first shot at a university education went so wrong. I freely admit that I am scared. A part of me feels like that naive kid who made dumb choices. On the other hand, though, this might be a chance of personal redemption, an opportunity to get it right.

I owe this to myself, and I owe it to that scared, overwhelmed kid of long ago who gave up a dream.

(Photo credit: Raoul Luoar. This picture has a creative commons attribution license.)
Filed Under: Dreams, life, School, Second Chances, Trauma Tagged With: , , , , , ,
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Autism And The Ontario Teacher Dispute

January 10, 2013 By

Going back to school after a two-week vacation is hard, especially for a child with autism whose routines have been completely turned upside-down by unaccustomed time at home, unaccustomed time in a hotel, and the whole Christmas ordeal.

This week has been rough for both of my kids, particularly my firstborn. George reacts to changes in his routine by not sleeping, which means I haven’t had anything remotely approaching a good night’s sleep since before Christmas. Now that the kids are back at school, and familiar rituals and schedules have resumed, the sleep issues are slowly but surely diminishing. Usually it takes a couple of weeks for the status quo to fully return.

This time round, though, there are a couple of wrinkles that are likely to hamper our return to our own odd version of normality. One of the wrinkles is actually a very positive one: for the next few Wednesdays, George will be attending a social skills program after school.

On the one hand, he gets to go to the therapy centre that was his home-away-from-home for three years. It’s a place he knows and loves, and the program is one that he desperately needs.

On the other hand, he has not set foot in the therapy centre since he was discharged 15 months ago. It is no longer a part of his daily life, and going there is a big change for him. As disruptive as that is for now, his participation in the program represents progress, and we are excited to see where this might take him.

The other wrinkle is a little more contentious in nature. For those not living in Ontario, here’s the short version of the story:

Last year the Premier of Ontario introduced legislation that would have the effect of screwing over the teachers. The teachers’ unions got involved and tried to negotiate a better deal. The inevitable happened – things went nowhere fast and the unions recommended a course of protest action for the teachers.

In December, there was a series of one-day walkouts staged by school boards across the province. By then, pre-Christmas stuff had already started to throw the routines off, so this didn’t really bother us. The biggest effect was that James’ Christmas concert had to be rescheduled to a date that was impossible for me (oh, the guilt!).

The one-day walkouts failed to have the desired effect, and now the teachers are not in a legal position to strike. They can, however, stage a one-day protest (although to be honest, I’m not clear about the difference between the two), and this is exactly what they are planning to do tomorrow.

Looking at the issues alone, my sympathies are with the teachers. They are entrusted with the task of shaping futures, and they deserve some respect. My opinion is kind of moot anyway: regardless of who’s right or wrong, the teachers have to do whatever the unions tell them to.

But speaking as a special needs parent, I have to say that I am kind of miffed at this latest development. At a time when I am trying to get George settled into the flow of a routine that’s already different, an unplanned three-day weekend really throws a monkey-wrench into the works.

That there are issues to be resolved is beyond question. I just wish this could be done in a way that does not impact the kids. I can handle the inconvenience of having adjust our family’s schedule to accommodate the kids not going to school for a day. I can live with them missing out on one day of instruction. In the grand scheme of their educations, a single day is not going to make much difference.

What I find hard to swallow, though, is the fact that special needs kids like George are going to endure an extra dose of stress and anxiety because of this.

I’m not sure what the solution is, but I cannot help thinking that there has to be a way to avoid making children bear the brunt of grown-up problems.

(Photo credit: Pylon757. This picture has a creative commons attribution license.)

Filed Under: Ontario, Politics, School, Teacher, Teacher Strikes Tagged With: , , , , , ,
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A Letter To My 2013 Self

December 29, 2012 By

Dear Me,

This letter comes to you from exactly one year ago. Today is December 29, 2012, and I wonder what you are up to, there on December 29, 2013. Perhaps you’re sitting in this same hotel room I’m in now, reflecting on the year just past and the year that is to come.

What have you accomplished in the last year? You set some pretty lofty goals for 2013. Which of those goals have you accomplished? Which ones did you modify as the year went on, and which ones did you just decide to ditch altogether?

You had a phenomenal running season in 2012, and you were hoping to surpass that in 2013. Did you? Did you beat 2:15 in a half-marathon, and have you broken that elusive one-hour mark in the 10K?

How is the long-term plan to run a marathon in 2015 going? Are you registered for the 2014 Around The Bay 30K? If you’re not, you should get on that soon.

How is work? I hope you have managed to hold onto your job in a time of great uncertainty and many layoffs. Are you making a reasonable supplementary income from your freelance writing?

Here’s a question I feel very weird asking: how is school? I would venture to say that no-one was more surprised than me when you decided to pursue post-graduate studies. By now, you should have completed two courses and you should be preparing for your final exam in a third course. I feel very excited to be embarking on this. A year in, I hope some of that excitement still remains.

And now for a tough question. Have you managed to get a handle on your eating difficulties, or do you still have this intensely uncomfortable relationship with food? You have spent virtually all of your adult life vacillating between eating disorders – it’s about time you sorted this out once and for all. Maybe something in the last year has helped you.

What’s up with the kids? For you, one year in the future from now, George is 10 and James is 8. Did you try the Talkability exercises to get George conversing more? Have you been reading every day with James to help him with his spelling? Did you get them both into swimming lessons like you’ve been wanting to?

And what are your goals for 2014? No matter how good or bad 2013 was to you, I hope you never lose the ability to have hopes and dreams for the future.

Regards,|
Your Younger Self

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

Filed Under: 2013 Goals, Children, running, School, Work, Writing Tagged With: , , , , , , , ,
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Santa and Autism: A Special Brand of Magic

November 23, 2012 By

This morning I was faced with a minor dilemma, brought on by the fact that it was Pajamas and Stuffed Toy day at my son’s school. If it had been my younger son – the one who doesn’t have autism – it wouldn’t have been a problem. But since this is my older son we’re talking about, I had to make a choice. Do I encourage him to take part even though the idea of wearing pajamas instead of clothes to school could make him feel seriously disoriented and possibly distressed? Or do I let him just wear clothes even though that would mean yet another thing that sets him apart from the typical kids in his school?

See? Dilemma.

As an autism parent, I constantly have to make tradeoffs of this nature on behalf of my child. On the one hand, I want him to have as many “typical kid” experiences as possible, but on the other hand, I don’t want to cause him to be upset.

It always come down to the idea of choosing my battles, and by now I know that I should only pick the battles that really matter. And let’s face it – wearing pajamas to school does not exactly count as an essential life skill, especially when he’s part of a class of special ed kids who probably wouldn’t be into the whole pajama thing either.

And so I decided to let him exercise his preference in the only way he knows how. I would dress him in a clean pair of pajamas and then see what happened. And what happened was that he promptly crawled back into bed. It was only when he realized that he was actually going to school that he started to resist the pajamas idea. Within seconds the pajamas were coming off and George was rummaging around for clothes to wear.

Surprisingly, though, he did want to take a stuffed toy. I say “surprisingly” because George has never really been into stuffed toys. This is a kid who sleeps with about a dozen Mr. Potato Heads and a pineapple. But not only did he want a stuffed toy today, he wanted two. In an intriguing fusion of holidays, he selected an Easter bunny and a stuffed Santa.

I was sure he’d lose interest in the whole thing by the time the school bus showed up, but he went off to school with Santa and the bunny, and by all accounts he had a great day.

Friday is always Show & Tell day in George’s classroom, and from time to time we send him in with something and his teacher gets him to “participate”. In a dramatic break with tradition today, he independently – independently! –  joined the Show & Tell circle and proudly showed off his Santa.

This moment of progress proves to me that although Santa is not real, he is capable of producing magic.

(Photo credit: Kirsten Doyle)

 

Filed Under: autism, Choices, Easter Bunny, National Health Blog Post Month, Pajamas, parenting, Santa Claus, School, WEGO Health 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: , , , , , , , , , ,
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