Back from the murky depths

I haven't blogged here for a long time. I suppose I could make excuses, and many of them would be true. I could tell you, for instance, that most of my blogging has been done on Kirsten's Castle. That is true, although I've been shamefully neglecting my forum there too. I could say that I've been busy. Very, very true. Full-time job, full-time Mom, involved with hubby's business, two hours a day spent on the subway. I could also say that I'm tired, and that would be equally true. These days I consider six hours of sleep an absolute luxury - even if it's interrupted a dozen time.

The truth, though, is that lately I've been feel overwhelmed by my status as "Mom to a special needs child". I feel intensely guilty about this, because I adore George with all of my being, and I wouldn't trade him for anything. He is so lovely. He is affectionate and gives the best hugs in the whole world. He is smart, and cheerful, and has a funny quirky sense of humour. He has a beautiful nature.

Some days it's so hard, though. Two nights ago, for instance, he had a two-hour long tantrum in the middle of the night because I had to take his milk-drenched hat away to wash and dry it. This evening when we came home, he crashed his head with full force against the grandfather clock because we hadn't gone to McDonalds. Sometimes he just loses it for no apparent reason, and he gets so sad and frustrated at his attempts to communicate with us.

Sometimes I'm able to help him. Sometimes I can calm him down, distract him, turn his tears into giggles. But sometimes, despite my most intense efforts, I cannot figure out what's bothering him or causing his behaviour. Sometimes I feel that there's nothing I can do for him. On those days, I feel that I'm just not cut out to be the mother of an autistic child. I feel really guilty when I am not able to make George happy.

I understand from talking to other autism Moms that this is a normal way to feel. No Mom - whether their child is autistic or neurotypical - is able to make their child 100% happy 100% of the time. We are not Stepford Moms, we are people. We make mistakes, we learn by trial and error. We use a process of elimination to figure out the meaning of some vague utterance.

And when things go right, there is no sweeter feeling in the whole world. About three weeks ago, we discovered that George is a lot more verbal than he's been letting on. He just doesn't talk much. Most of his speech is in the form of one and two word requests and comments. However, he has started spelling things out with his alphabetic fridge magnets. He started off with single words. Boy. Duck. Hat. Within about three days he had moved on to simple phrases. Zac the rat. Gus the duck. Peg the hen. Now he has moved on to real sentences. Zac is a big rat. Zac had a pan. The ants ran on the jam.

I am looking at this as a potential form of communication. George's speech might - and probably will - develop to the point where he can say these things. But if it doesn't, he'll be able to just spell them out. The potential is huge. His therapists believe that this is a very promising precursor to speech. We will see.

Having an autistic child is really hard work sometimes. It can fill me with desperation and drive me to tears of frustration and sadness. But overall, it is intensely rewarding. All the little milestones that get taken for granted with neurotypical children are appreciated and celebrated a thousand fold with autistic children. Parenting an autistic child has its moments of joy and triumph. It can make me whoop with happiness and move me to tears of joy.

Can we fix it? Yes, we can!

Bob the Builder is an integral part of George’s life. He starts his day by watching a Bob the Builder Youtube video while he’s getting dressed for school. The Bob soundtrack will bring him running from anywhere in the house, no matter what he was doing. When he’s allowed to pick a DVD to watch, he always goes for Bob, and most of the books he brings home from the school library have the familiar Bob the Builder motif on them. And now he is starting to pretend to be Bob.

Pretending has been an issue with George, as it is with many autistic children. He was never really into stuffed toys as a baby (except for Mr. Lion, a gift from his Auntie Jenny). His Thomas the Train set was repeatedly dismantled rather than played with, and instead of rolling toy cars back and forth, he would sit there spinning the wheels round and round. Halloween has always been a bit bewildering to him, because he just hasn’t understood why we would dress him up in weird outfits and parade him from one house to the next.

Lately, though, we have started seeing some basic pretend play skills emerging. Now, toy cars are “driven” along the floor and up the furniture. Attempts are made to imitate dances and actions seen on TV, and pretend telephone conversations are starting to happen. Knowing how important pretend play is to a child’s development, I am overjoyed at this turn of events.

This morning I got to witness this pretend play going up a notch. It was one of those gem-like moments that you catch and hold onto forever. George had been up for most of the night – not upset, not sick, just awake. He was sick earlier this week, and the fact of being ill plus the change in routine associated with him not going to school sent his sleeping patterns into a tailspin. So at about 6:00 this morning, I was sitting on the couch with him willing him to lie down and go to sleep. Instead, and to my surprise, he started to “play Bob”. He picked up his toy phone, held it to his ear, and said, “Bob the Builder”, using the exact tone that Bob uses when he answers his phone. Still holding the phone to his ear, George made a few brief utterances punctuated by pauses. The whole thing looked and sounded like a real telephone conversation. At the end of it, he chirped, “Bye!” and put the phone down.

I was sleep-deprived and barely functional, but I still grabbed my boy and danced around the room with him. It is so amazing to see these little spurts of development. I feel honoured, as if he has chosen to allow me to witness these moments. My plan now is to create as many opportunities as possible for this to continue. If George wants to use Bob the Builder as a conduit to pretending and social interaction, that’s fine by me. Bob has precipitated several developmental milestones, and once again, he has saved the day.

Monkeying around

On Friday, George had a school field trip to the zoo. I went along as a parent volunteer, which means that I got to spend four hours chasing a bunch of super-energetic four-year-olds around a very large zoo. By the end of the day, the kids were bouncing around like jumping jellybeans on speed, and the moms and teachers were glassy-eyed with exhaustion.

Everyone had a great time, though. The weather was cool and drizzly - perfect weather for the animals to come out. In a tribute to his African heritage, George appeared to prefer the zebras to anything else. That is, he preferred the zebras to any of the other animals. The thing he preferred most of all was the rain. He insisted on splashing in every rain puddle in the entire zoo. Twice. By the time we left his shoes and socks were soaking. His pants would have been soaking too, if it weren't for the splash pants he was wearing.

Being on the trip gave me the opportunity to chat with a couple of the other moms, and also with George's teacher. We have been very lucky to have George placed with such a great teacher right from the start. He's going to be with the same teacher for Senior Kindergarten, and I'm completely OK with that. I sat in on one of her classes a while back. She is energetic, her classes are fast-paced, she keeps the kids moving, she keeps them interested and engaged. She is very intense, but in a good way. She has the kind of intensity that works perfectly in a class of special needs children.

We had a progress report meeting with her a couple of weeks ago, and she made it clear that she's seeing the same progress in George that we are. She believes that the eyes are the window to the soul, and she can see a very bright spark of intelligence in George's eyes. I see that too, especially when we get George involved in an activity that interests him. Walking around the zoo with him was a treat for me. He loves animals, so he's been motivated to learn their names. As we toured the zoo, he was softly telling me what animals he was seeing. "Elephant. Birdie. Duck. Zebra. Bear." And so on.

He's definitely progressing in leaps and bounds. And I'm loving the ride.

A little triumph goes a long way

The ability to handle transition has always been an essential element of human survival. Back in the Caveman days, for instance, a failure to switch from one task to another could literally get you killed. Just imagine, you’re out hunting zebras or something, and all of a sudden you discover that a lion is headed in your direction. What are you going to do? Continue to aim your spear at the zebra, or instead turn and throw it at the lion before running like hell? And for the women back at the cave, picking berries or trying to get rid of the Woolly Mammoth smell on the cave floor would be forgotten in an instant if a wild boar had cornered a child somewhere.

In modern times, transition is no less important, and most of us do it all the time without even thinking about it. I could be writing up a report or updating a project plan, and get interrupted by a phonecall or someone stopping by my desk. I could be in the middle of replying to an email when my husband announces that dinner is ready. I could be driving my car at a steady pace and have to slam on brakes when someone walks out into the road. I could be vacuuming the carpet when James comes and asks me to watch Thomas the Train with him. Or I could simply be in the middle of doing something and suddenly remember something else that has to be done right away.

For children with autism, transition is more of a challenge. George cannot be engaged in one activity, and then be expected to just switch to something else without a heads-up. For example, turning off the TV or switching channels in the middle of a show is a bad idea. George understands that the credits rolling is a signal that the show is over. At that point, he can be transitioned to something else. But if the show is cut off unexpectedly, there will be instant screaming and head-banging.

Sometimes we have trouble figuring out how to ease the transition from one thing to another. It’s especially difficult if George is engaged in an activity that he really likes. But we have had a big success in this area lately. It happened at the daycare centre. George’s morning routine since starting school in the Fall has been quite busy. Gerard or I would take him to the daycare, where he would go to his regular room downstairs. He would eat breakfast, and then daycare staff would take him upstairs and put him on his bus to school. George was having a horrible time in the mornings. He would cry when he was taken to the daycare, then he would calm down briefly to eat his breakfast, then he cry again when he was taken upstairs to the bus. If the bus happened to be late, things would be even worse.

Just as we were tearing our hair out trying to work out ways to make things easier for George in the mornings, the special ed worker who consults to the daycare hit upon an idea. Maybe, she said, the transition from upstairs to downstairs, and then back upstairs, was too much. It was a lot of movement in a 25-minute period for a child with autism. The daycare staff, being the wonderful people that they are, changed George’s breakfast arrangements. They started giving George his breakfast in one of the upstairs rooms, and letting him stay there until the bus came. That eliminated the need for him to make the transition from being upstairs to being downstairs, and then being upstairs again.

It worked like a charm. It was one of those simple things that has had an instant result. Now, George walks into the upstairs room with a smile on his face, and sits down to eat his breakfast without so much as a second glance at whichever parent dropped him off. He is able to ease seamlessly into his day, and seems to actually look forward to going to the daycare centre in the mornings.

And Gerard and I breathe a huge sigh of relief, and bask in the early morning smiles of our firstborn son.

Things I am grateful for

I am grateful that the Toronto Transit Commission reached a last-minute deal with the union, averting a strike that would have really ucked me up.

I am grateful that my cold appears to be getting better, and that the migraine I had earlier today has ridden off into the sunset.

I am grateful that A&W makes diet root beer. It means I can enjoy my favourite carbonated beverage without feeling guilty.

I am grateful for my mom and my brother. I don't want to go into too much detail here, but they are standing by me through a difficult issue.

I am grateful to live in a house with a nice back yard where my kids can play.

I am grateful for my mother-in-law who helps out with the kids a lot.

I am grateful for my friends. Especially Jenny, who's put up with an unbelievable amount of crap from me over the last 28 years or so.

I am grateful for Gerard. We have our problems, but at the end of the day we are crazy about each other, and he's the best dad ever.

I am grateful for my brother-in-law, who helped us get George placed in a really great school with the world's best special ed teacher.

I am grateful to have a challenging job with people I like.

I am grateful for my kids. They make me feel like the richest person in the world.

Yup, when you think about it, my life's not half bad.

Cough, cough, splutter, splutter

Last weekend George started to cough. Predictably, the cough turned into a full-blown cold within a couple of days. He's still sick but he's coughing less. I'm pretty sure he'll be back to his old self within the next couple of days.

George keeps picking up colds at school. I'm OK with this. I knew that this would happen when he started going to school. He's a tough kid, and his immune system usually does its job pretty well by killing off those bugs fairly quickly.

The trouble is that when he gets a cold, there's always a chance that everyone else at home will get sick too. And that's exactly what has happened now. George is still sick but recovering. James is sick. Gerard is sick. I'm sick. My mother-in-law is sick. We all deal with our colds in different ways. George just kind of curls up on the couch and chooses quiet, restful activities. My mother-in-law lies in bed and drifts in and out of sleep. Gerard and James try to do things as usual, but they are bad-tempered sick people. They have hissy-fits if they don't get their own way.

And me? Well, I don't have time to be sick. Sometimes it's not even worth my while taking sick days from work, especially if there's a bunch of sick people at home. I have to take care of them, take care of myself, and still get done all the stuff that has to get done. Usually Gerard's quite good about helping out around the house, but when he's sick, he's about as helpful as a grasshopper on speed.

So here I am, taking a sick day from work. It's 10:00 in the morning and I'm already exhausted. I just hope and pray that this cold will soon be a thing of the past.

From darkness to light

One step at a time, I am taking control of my life.

Just like anyone else, I have good days and bad days. On the bad days, I look in the mirror and think, “Man, I’ve got so far to go before I’m in the shape I want to be in”. On the good days, I take stock of where I am compared to where I was, and I think, “You know what? I’m doing OK.”

And I have come a long way. I don’t have to look very far back to get a contrasting picture. When 2008 winged its way through the window, I was not doing too well. My marriage was like Space Mountain on acid, I was in constant physical pain from injuries, I was eating utter crap, I was spaced out on anti-depressants that weren’t really helping, I cried almost every day, I was always getting long-lasting colds and bad headaches, and my lifestyle couldn’t have been more sedentary unless I’d been in a coma. I mean, when you think about it, how on earth was I functioning?

Where getting my life on track is concerned, I have three qualities that count in my favour. First, I am nothing if not proactive. Once I recognise the need for change, I don’t hesitate to go out and pursue it. Second, I am a natural-born optimist. I’m one of those people who looks at the world through rose-coloured glasses. No matter how bad things are, I live under the assumption that it’s making me stronger and that it will get better. And third, I am as stubborn as all hell. Ask Jenny, who’s been my best friend for several lifetimes now. She’ll tell you that once I get an idea in my head, I just don’t let it go.

So when I decided at the beginning of the year to make changes in my life, I was very serious about it. I knew that I would not be able to make a whole lot of sweeping changes all at once. That may work for some people – not for me. I’m more of a gradual makeover gal. So I started with the thing that was easiest to control – my diet. I don’t believe in diets per se, but I do believe in eating sensibly. Without fuss, I excised from my life the following: chocolate (apart from the very occasional indulgence); those sugar-laden apple turnover things that my husband loves; carbonated beverages (apart from the occasional Diet Coke); potato chips; Tim Hortons cheese croissants; French Vanilla cappuccinos and Ice Caps; burgers and fries (again, apart from the very rare occasion when I need to grab a bite in a hurry). I’m eating a lot less pasta and bread, and a lot more salad. I ditched the cookies in my work filing cabinet in favour of trail mix, fruit, and low-fat sugar-free yoghurt. I still drink copious amounts of coffee, but hey, I’m allowed one vice, right?

About two months ago, I attended a talk presented by a chiropractor who is very knowledgeable about health and wellness. At the talk, he appealed to my pocket-book by offering a special deal on a wellness consultation. I learned a lot about how my body works and why it hasn’t been functioning very efficiently. Since the initial consultation, I’ve been going to the chiropractor for regular adjustments. In the past, people have told me horrible things about chiropractors – all I can say is that they must have had really bad chiropractors. Since I’ve been going, my headaches have all but disappeared, my foot is actually functional again and improving daily, and my energy levels are more consistent.

The next thing to change was how I deal with depression and anxiety. I woke up one morning and had an epiphany. Out of the blue, I realised that the anti-depressants were not only not helping, they were actually damaging me. They were masking the anxiety rather than helping to control it. For a long time I’d felt as if I had this huge cloud over my life, and I realised that the appearance of this cloud coincided with the start of the anti-depressants. I made an instant decision: the meds had to go. And so they did. I stopped taking them immediately, and within days the cloud was gone. I remember how I felt after my Lasik ten years ago. I had worn glasses and contact lenses since the age of ten, and when the patches were removed from my eyes the day after the procedure, I drew in a breath of wonder that I still haven’t really fully exhaled. As my Mom drove me home, I kept exclaiming, “Hey, I can see each individual blade of grass instead of just a mass of green! I can see the patterns in the bark of that tree! I can see how that bird’s feathers don’t end smoothly, but are kind of straggly on the fringes! I can see this! I can see that!” and on and on. For the first time in my life, I was seeing things with a crystal-clear clarity and sharpness that I never got with lenses. Quitting the anti-depressants was the mental version of that. I didn’t know what I had been missing until I had it back.

Just yesterday, I made yet another change. For the first time in months, I went to the gym. My foot felt good enough to withstand the treadmill, so I gave it a try. I am fortunate to have a heart and lungs that work very efficiently. Even after months of inactivity, I have a decent level of fitness. My limitations have been due to injury rather than cardiovascular weakness. As soon as I started on the treadmill, I knew that my running shoes had to go. They are old friends; they have carried me far for a long time. But I knew that this run would be their last. Despite the worn-out shoes, I had a good work-out. The feeling of euphoria that I had was heightened by the fact that I was able to walk out of the gym without limping. Since my usual litmus test is how I feel the following day, the jury was out until this morning. I am pleased to say that the jury did not let me down. I feel great; my foot feels OK. I went out at lunchtime and bought new running shoes, and now I am itching to try them out.

I don’t know what the next change to my life will be. Beyond knowing that I wanted my life to change, I didn’t really have a plan as to how this was going to happen. I’ve been going with the flow, taking the opportunities that come to me. And so far, it’s been working. While all of this has been going on, something has changed in the dynamic between me and my husband. It is simply wonderful. We are falling in love all over again.