Yesterday was 'A's first day of school. We arrived late and arms full of backpacks and the shopping list for starting ASD kindergarten. He was amazing. Ever since we told him he would be starting school.. and have spent the summer focused on helping him get better sleep.. he has a different response to following directions and established rules and routines. 

Today however is a totally new story and different experience for him and I. We WALKED to school. Not the whole way of course.. we walked to the bus terminal and then from the last bus stop to the school. He held steady for his goal. School. 'A' was getting to school and nothing was going to stop him.

Not only was he determined to jump on the closest bus and eagerly wait for the bus to get moving.. but he tried to do this on each and every bus until I could get him to the right one. He had a hard time sitting and waiting for the bus to get moving..and waiting patiently as it stopped each time. This isn't the first time we've made a habit of using city transit..but this is what we've been practicing for over the last year.

I will always love the expression on his face when he sees that his determination to be understood is finally taken effect. I promised him he would go to school with his brother..and he will have that. Once we make sure he'll stay seated on the school bus!!

Do you take your kids shopping with you?

I always bring my kids along with when running errands, its a hassle, but we always succeed. My youngest is a bolter, and my oldest is either melodramatic or energized by change. We have have tantrums, meltdowns, time-outs, everything in public. After 2 years of being a spectrum mom, I got over the embarrassment quite quickly. I'm not a single mom but my partner works full-time and I don't drive. We use public transit, or haul a wagon or stroller with us. I also keep a toddler harness handy, the kind with the plushy monkey on it.

What I don't see is other children like my bolter anywhere I go. I test his limits as much as he tests mine. I give him freedoms knowing I'll have to criticize and take it away in a moment. I've chased him through malls, I've chased him down the street, one winter I even chased him face-first into a snowbank.

I feel depressed and ashamed, despair drains the colour from my face. I don't see anything wrong with exposing him to the world, or the world to our lives. But it takes a lot of courage to share our world with the public eye. I am proud of him and all of his accomplishments. If an activity is within commuting distance and ease, we'll do it. If its financially feasible we do it. I laugh and smile with pride at my youngster as he acts out. I chastise him when he gets out of line.

One day at the grocery store, I had my 3 year-old severely autistic, ADHD, nonverbal son with me in the seat of the shopping cart, remaining temporarily entertained by a few grapes. A young girl about 9 years old came up to me and squished the loaf of bread on the top of my cart. She smiled and was enthralled by the shiny packaging. Her mother on the other hand rushed over, gently reminded her daughter that that was impolite, and apologized to me for her daughter and pointed to autism as the culprit.

I was totally stunned; this sweet young girl showed my bread some affection and I was filled with pride that my placement of the bread was to her mind, an engineering delight. What caught me off-guard even more so, was that I had with me, what I think to be the most evident example of autism in the flesh that I've ever seen and never thought for an instant that we passed by like ordinary folks. I really would've sworn there was a neon sign above our heads announcing the demise of our family lineage, of our social lives, and anything that others may see as normal. Why then, didn't this kindred mother see it?

I caught up to her later, as the urge to share support just bubbled up inside of me. I told her that it was okay, and that I understand her daughter's behaviour because my children have autism too. She answered defensively and you could hear the exhaustion in her voice, that her child was worse. She had severe autism, not like the other milder autistic kids that lead normal lives and can go to normal schools. This behaviour is why she never takes her daughter shopping with her. I couldn't believe it, part of me was jealous that she had that luxury to not bring her children, another part of me was horrified at the idea. If I learned anything about autism, life experiences are a big deal. I tried to reassure her that I truly did understand, but to no avail.. this poor lady was lost in her despair too. I wondered what I would look like when my children grew to be the same age as hers. They rushed off to complete the errand with as little interaction with people as possible, shielding society from her daughter's quirky antics.

Would I feel that desperate? Would I lose the silver lining of my children's uniqueness?

It stayed with me, that feeling of a companion spirit in the fight against behaviour problems just passing me by. I found myself going through the cash and my son eagerly ready to punch in the numbers on the debit machine. Anticipating the packing up of new edible goodies, and the cashier saying goodbye to him.

It hit me. I made it my mission that he will one day walk through that grocery store and make his own purchase. All on his severely-autistic own.

I see my children have gifts. They have gifts of sight into the natural world I could only hope that society would ever appreciate. My bolter, he loves the wind in his hair and dreams of being a bird, his appreciation of music and fascination with physics astounds me. If he is giving all the positive influences we can, would he someday find his calling and earn his right to independence? My oldest has a memory that is beautiful to me, even if he may remember some things I would've wished he hadn't, his fascination with patterns and trends excites every bone in my motherly body. Could he, with the same positive influences and tools as his brother be able to acquire the skills he seems destined for?

The look on that little girl's face said it all. It's hard to remember when you have to keep up to therapists and teachers telling us about autism this, autism that. They have gifts, just like anyone else does, they just show them on their sleeves right beside their hearts.

Let's get some sleep!!

Today marks day three of my efforts and day one of posting about it.

'A' has just turned four years old and still wakes up throughout the night at least 2 to 4 times. This is a vast improvement over the years. The big step now is that this poor sleeper is starting JK this year.  I'd like for all of us to be more rested in the morning!

What I have done thus far:

His bedroom. I have switched his room to the bedroom with the air conditioner in the window (he is sensitive to heat with a febrile seizure disorder or variation of epilepsy...that'll be a story for a later post); set up the tv and dvd player in his room; made sure to have plenty of comfort toys and pillows (he loves to play in pillows and blankets). I'll post pictures of his room to show how I'm trying to accomodate his sensory needs while dampening the nuisance issues.

I put the baby gate back at the top of the stairs..which we stopped doing when it didn't appear to be an immediate hazard every night anymore. closed all the other doors and have his brother in bed before him. Now he is left with a bedtime snack and cup of milk; his favourite mickey mouse video and calm. I am nearby in our bedroom but with the door closed.. I tend to him if he makes a fuss but stay in the room until he seems to be asleep.

What he has done. He loves his room. It is smaller than the one before.. has the air conditioner.. and every day we find another way to make it more appealing to curl up in. Pillows on the bed and their infant quilts as decor on the walls.

As I said at the beginning of the post this is day 3 of him putting himself to bed!!!