Speaking Engagement -- I Am Not a Bad Kid!!!

I'm honoured to have been asked by the Diocese of Ontario of the Anglican Church to give a presentation in Kingston, Ontario, on September 15th. Actually, I'm giving it in conjunction with my minister, the Rev. Dr. Barbara Robinson, who has been instrumental in creating a warm and inviting environment for Bear and our family at our church. She is the mother of a child like Bear, although he's an adult now, so she has the ability to look at the challenge of integrating special needs children into the church from a really interesting perspective. If you are in the area, I invite you to come join in the conversation.

Confessions of a Negligent Mother

This morning, right after dropping Bear off for his first day of school, Stitch and I headed to the doctor. Stitch is almost 2 1/2 years old, and a real little ball of happy toddler energy. Like all little boys, he loves to run and jump and climb. He's full of mischief and curiosity, the mischief usually a direct result of the curiosity. He thrives on "huggles" (half hug, half snuggle) and kisses, and falls asleep every night with my arm wrapped around his middle, his little bum tucked into my abdomen. He scrambles out of bed in the morning with a smile on his face, and that smile rarely leaves for the rest of the day. Toddler tantrums are best handled by poking him in the tummy, which normally provokes fits of giggles.

From the moment he was born, we knew Stitch was different from his big brother. As he's gotten older, we've become more and more sure about that. He just goes with the flow, without a care in the world. It's magical...

sun + sand + water = happy toddler

So why, then, did today find us at the doctor, catching up on immunizations that he should have had two years ago? Because I'm negligent? Some might say so. Because I'm stupid? Some might say so. Because I'm gullible? Some might say so. Or because I was terrified of having to watch my beautiful, bright baby boy disappear before my eyes? I'd say so.

In my real life I'm a writer, editor, and public speaker. That means I know how to research the heck out of any topic I'm interested in, and I do. Some people dream in technicolour...I dream in Google. So yes, I'm perfectly well aware that the link between autism and children's immunizations has been debunked. On the other hand, I'm also well aware of all the anecdotal evidence from parents who are certain that their child's autism is directly linked to their immunizations, specifically the MMR vaccine.

It was with great trepidation that I had Bear immunized when he was a baby, but I did. The logical side of me knew that the risks posed by not having him immunized outweighed any possible risk from the immunizations, but the emotional side of me was terrified nonetheless. I watched him like a hawk for weeks afterwards, but there were no signs of autism. I breathed a sigh of relief.

But as he started getting older, he started to exhibit more and more behavioural challenges. At 4 1/2 years old, he was finally diagnosed with ADHD and ODD. By that time he was out of control -- aggressive to the point of violence at home, unable to function at school, constantly being sent home, unable to participate in any extracurricular activities or weekend fun -- and we were overwhelmed. Stitch was a whopping two months old when Bear was diagnosed, and all my Mommy protective instincts went into overdrive for both my babies.

At that time, I felt like I was barely clinging to my sanity. Bear's violent outbursts were constant, to the point that we installed a lock on Stitch's door so that we had somewhere safe to put him, out of the line of fire. We walked around on eggshells, terrified of provoking an outburst. Would this be the one where someone got hurt? We rarely left the house as a family, and dreaded anything we couldn't get out of. The future looked bleak both for Bear and for our family, and I felt like I couldn't handle any more.

Stitch received his first round of immunizations, the ones I knew were safe, but we stopped there. The next round included the controversial MMR vaccine, and this time the emotional side of me won out. I just couldn't take that risk...I just couldn't handle any more...so I put it off...and off...and off...

Now here we are, two years later, catching up on Stitch's immunizations. Today's vaccinations included the MMR vaccine, which the logical side of my brain tells me is safe. The logical side of my brain also tells me that if the vaccine does play a part in the autism story, at least Stitch is older and his brain is considerably more developed that it would have been two years ago. The emotional side of me, however, is going to be watching him like a hawk. Forever.

Back to School and the Alphabet-Soup Parent

Tomorrow is back-to-school day for Bear, and I have a headache. No, really. I have a headache. Granted, I get a lot of headaches, but I'm pretty sure the fact that I have a knot in my stomach as well means that my headache is stress induced.

Why so stressed, you ask? Um...did you miss the part about tomorrow being the first day of school?

Going back to school can be difficult for any kid, but it is especially difficult for kids who don't deal well with change. For kids like Bear, who have conditions like ADHD, ODD, SPD, ASD, or anxiety, the first day of school (or week, or month...) can be pretty traumatic. A new classroom, a new teacher, new sounds, new smells, new people in your class, old friends not in your class, a new desk, new rules, new work, new expectations -- these things aren't sources of excitement for kids who fear change. Rather, they are a source of major stress, and stress tends to manifest outwardly in behaviour problems.

So what can parents of alphabet-soup kids (kids with ADHD, ODD, SPD, ASD, etc...) expect on the first day of school? We never know, and that's the source of our anxiety. Perhaps there will be meltdowns at home, before school. Or perhaps all will go well until we get to school, at which point the dam will burst and all that fear will come out. Or perhaps we'll get a phone call half-way through the day, asking us to come get our overwhelmed and out-of-control child. Or perhaps he'll manage to keep it together until he walks in the front door after school when, safe at last, the slightest trigger will set off a major incident. Or perhaps the first few days or weeks will go fine, lulling us into a false sense of security, until something -- that dreaded, unexpected something -- sets her off, releasing all the stress the poor little thing has been building up.

As parents of special needs children, we know something is coming...something bad...but we don't know what or when. That's why parents of alphabet-soup kids dread school starting up again. Can you blame us?

So what can other parents, teachers, family members do to help? I found some advice on Four Sea Stars that, although it refers specifically to autism, is appropriate for all our special-needs kids.

I promise to smile at you if you promise to smile at me.

To Bee or Not To Bee

As I type this, TheODDDad is outside lopping the heads of my sedum plants, just as they're starting to bloom.

Plop.

Plop.

Plop.

As the beautiful flowers fall to the ground, bees and butterflies all around the neighbourhood are crying out in distress. OK, that might be a slight exaggeration since I don't know if bees and butterflies actually have feelings, but you get my point.

Every year my sedum plants are abuzz (sorry for the pun, but I had to) with activity, and every year I pat myself on the back for supplying a safe haven for our winged friends. The fact that I don't have to do anything to the plants except, well, not dig them up, doesn't dampen my sense of pride.

This beauty was hanging out on my sedums last fall.

Then his buddies joined him...and therein lies the problem.

Then came this year.

This year I went to TheODDDad and instructed him to behead my precious flowers, the very ones I look forward to seeing every year. I know...you're asking why I would do such a crazy thing. I'm glad you asked.

Bear has always been slightly afraid of bees and other bugs that sting, but no more than the average bear. (Sorry...It must be the Kahlua I put in my coffee this morning...kidding!!!) For whatever reason, that slight fear morphed into a major problem this spring, although we have no idea why. At one point it was so bad that Bear wouldn't leave the house unless someone walked out first to check for offending bugs. If we were going somewhere in the van, he would wait inside the house while I went out and opened his door, at which point he would dash out and jump into the van.

"CLOSE THE DOOR!!!!" he'd shriek if there was the slightest pause between him jumping in and the door closing behind him.

Sometimes playing outside with his friends provided enough of a distraction to allow him to forget his fear for a few minutes, but other times he'd end up running into the house sobbing because he had seen a shadow that may or may not have belonged to a bee. The worst was when he would want to come in the house but spotted a bee (or wasp...or hornet...or other stinging/non-stinging bug that may or may not have been a stinging bug...) near the door. He'd run into the middle of the street (quiet street, thank goodness) where he'd stand, calling my name in panic. If I didn't respond, I'd find him still standing there a few minutes later, sobbing and shaking, still calling me in desperation.

"Why didn't you come when I called you?" he'd demand accusingly through his sobs. "You were ignoring me!!!!" My explanation that I hadn't heard him or had been busy with Stitch never seemed to be good enough. All he knew was that I hadn't come when he needed me. It was heartbreaking.

We did everything we could this summer to help him conquer his phobia, even resorting to a couple of sessions of hypnotherapy to see if that would work. Unfortunately, Bear was a less-than-cooperative hypnosis subject, so it didn't seem to help much. The therapist had to try to go in through the back door of Bear's subconscious, but I think it was shut as tight as the front door. Guess this shouldn't be too surprising for a kid with ODD.

Back to the sedums. We didn't plant any flowers this year so as not to make life any more difficult for Bear than it already is, but there was still the matter of the sedums. Sedums are a perennial that flower in the early fall, and the flowers last right through until October. The fact that they're just steps from both the front door and the side door means they have the potential to cause real havoc...so they must go.

I hated to have to do it because I really love watching the butterflies and the bees, but in this house it's Bears before bees.

Maybe we'll be able to welcome them back next year.

Forever in Grade 1?

There are only 10 more sleeps until Bear goes back to school, and I'm not impressed. In fact, I'm actually dreading summer being over, which is funny since the thought of Bear being home every day for two months nearly had me in tears back in June. Summer has been a real problem for us in the past because Bear stayed home with me while all his friends participated in summer programs. Bear could have done that too, but his anxiety always got the better of him. This year, however, none of the kids on the street went to camp, so he's had lots of friends to play with. Not only was he not bored and driving me nuts, but he wasn't even in the house. Bonus!

But now school is about to start, and I find I'm dreading that even more than I was dreading summer. Bear should be going into grade 2, but instead he's repeating grade 1. In many ways, it's my fault that he's having to repeat his year, although I'm trying not to allow myself to feel guilty about it. Bear missed a total of 60 days of school last year, which is absolutely insane. Each one of those missed days required a decision by me to keep him home, which is why I say it's mainly my fault. In that 60 days were two weeks where he didn't fall asleep until 4 a.m. or 5 a.m., so I kept him home. Then there was the week I kept him home to "home school" him (or was that two weeks?). Then there were the days when he was so angry and aggressive that I felt it was better for everyone if I simply kept him at home. Then there were the days where his anxiety was so intense that I couldn't bear the thought of forcing him to go to school. After all, what could one more day hurt?

It makes me sound terribly negligent, doesn't it? Keep in mind that there were also many, many, many days where I pinned him down to get him dressed, or took him to school half dressed, or carried him out to the van kicking and screaming, or carried him into the school kicking and screaming, or took Stitch into the school for safekeeping and then returned to the van with two or three teachers as back-up.

School, apparently, isn't our thing.

So when all was said and done, Bear had missed so much school that he simply wasn't ready to move on to grade 2. So what to do then? We could move him into grade 2 anyway so as not to crush his self-confidence, but then he would flounder and his self-confidence would be crushed anyway. Not exactly a great option. Or we could keep him in grade 1, which may crush his self-confidence, but the work he struggled with last year would now be easier, so that might build his self-confidence. There was really no easy answer, but TheODDDad and I went with the latter option.

The school, bless them, has put Bear in a split grade 1/2 class, where he'll be with some of his grade 2 friends but will be doing grade 1 work. My hope is that he won't even realize that he and his friends are doing different work. If all goes well, he'll end up doing grade 2 work too.

If all goes well...that's the catch. I'm not trying to be defeatist or negative, but I don't think things are going to go well. I had the opportunity to observe Bear at a occupational therapy appointment the other day (more on that another day), where he had to sit at a table and do some very simple drawing and colouring exercises for about five minutes, and it just about killed him. He managed about two minutes, but after that he left the table pretty much every minute, rolled on the floor, wandered around, and complained about how boring and stupid it was. I can pretty much predict that reading, writing, and math are going to be a lot more boring that what the OT had him do, so I'm not holding out much hope for a sudden academic breakthrough.

I wonder if there's a limit to how many times a child can repeat grade 1...

A-Shutterbugging We Will Go!!!

There's something about being at the cottage that makes me want to get out my camera. It doesn't always happen, mind you, because I tend to be chasing children rather than catching them on film. (I just showed my age by referring to "film," didn't I?)

I've been promising Bear for a long time that we would go "shutterbugging." When he was younger he used to say he wanted to be a shutterbug when he grew up, which is something I'm delighted to encourage. Anything that holds his attention and makes him feel good about himself is fine with me.

The other morning he was a little bored because his friend next door was still eating breakfast and none of us wanted to go down to the beach with him (he's still too young to hang out at the beach by himself), so I suggested we go shutterbugging together. I bought a pretty fancy camera for work a few years back, so that freed up our point-and-shoot. Bear is allowed to use it, but we've never gone out on a picture taking excursion together. The other morning seemed like a great time, although I have to admit I had an ulterior motive. While Bear was taking his pictures, I figured I might get a chance to take some good pictures of him.

Here's a sample of what I got. They're not fabulous, but I had to take them when Bear wasn't looking. He was not in the mood to be the subject of my pictures.

Taking pictures of the water.

Taking picture of the neighbour's car. 

Cottage: Where dogs are as important as children.

Trotting down the lane, camera in hand.

Checking out what his butt looks like. Trust a kid.

All in all, our first shutterbugging experience was a success. I'm sure there will be more in our future.