Monday, October 26, 2009

Disappearing Act.

One of the hardest things for any parent to do is look at his or her child and say "my child is not like the other children, something is wrong". Even harder is picking up the phone, and calling a doctor to schedule an appointment, telling a nurse why you are in to see the doctor, and then having a doctor examine your child to confirm your suspicions. And so starts the journey for many parents who have children with special needs.

Part of my job is taking those calls from parents who are just starting their journey. I listen to their concerns, document their child's case history, and figure out which therapist they should see, who can best assess their child's needs. It is a great job, and if I can be a positive part of someone's journey, a part that doesn't kick them when they are down, or leave them in tears in a parking lot, then that's a great day. Even better if I can make them feel confident that they are making a strong first step, or let them know that they are not alone.

It does take a lot out of me (hence the disappearing act), especially the parents who are calling because their child has a new diagnosis of Autism. It hits close to home. I want to take these parents and give them a virtual hug, tell them I know it sucks, I know their world feels like it is spinning out of control and that they feel like they don't know where to turn. I want to tell them that it will get better, and that I get it, that it will always be hard, and that no matter what is "wrong" with their child, he is still perfect in his own way. He is still their baby.

At the end of the day, it is so worth it to help people. It helps me take the focus off of myself, and to remember how fortunate I am. If I can lift someone up for even just a few minutes, that is a great thing. It feels good to pay it forward. Dog knows many parents have done it for me.

Tuesday, October 13, 2009

The Journey.

I was speaking with blueballoon's Director of Behaviour Therapy tonight, about Max, Autism, the journey, my frustrations. I have been feeling really anxious about Max lately. Wanting answers. To know where we are going. What's the plan? What about junior kindergarten? Is Max getting everything he needs? Are we doing absolutely everything we can for him? How does he stack up next to other kids in IBI programs? Is he having enough progress? Not enough? How does he measure up to the supposed benchmarks that are used to determine who gets funding and for how long? Yeah, I must be a real treat to deal with right now, don't I know it.

I was reminded that when Max started in January, his goals were very basic. He was unable to transition from the waiting room to the treatment room without having a meltdown. It took him a long time to bond with new therapists. He wasn't able to imitate or sit at a table to do work. And now, as frustrating and challenging as his behaviour can be at times, he transitions without a problem. He says "hi" and "bye" to everyone. He looks you in the eye. He is beginning to use language functionally. He is starting to tolerate his little sister. He can follow a visual schedule, sit at a table for 45 minutes of therapy, blow bubbles, and he no longer throws tantrums because he feels that nobody understands him. He is potty trained (for the most part), can walk down the sidewalk without bolting into the street, and most importantly, he is happy.

It's easy to lose the forest from the trees in this journey. I'm thankful I have such a great team supporting Max (and me).

Saturday, October 10, 2009

Video Killed Radio Star.

It's been a while since I posted a bunch of videos, so I thought I'd show everyone what we were up to on this beautiful fall day.

Cam & I discussed Obama being nominated for a Nobel Peace Prize (we think he will absolutely do something to deserve it - other than being the 1st black president, but we question the timing of it). We also seem to agree that the Ontario Government really, REALLY mishandled the whole e-Health record situation. With all that money to piss away on consultants, it blows our minds that they don't have enough money for therapy for children with special needs. For shame.

Cam likes to dance. She also likes the old skool rap, and does a pretty solid MC Hammer impression (hum "Can't Touch This" as she dances to see what I mean).

Most of the time Max prefers to steer clear of Cam, unless of course it is to give her a bop on the head. He seems to have turned a corner as he climbed into the sandbox next to her today and played right next to her for about 15 minutes. He then proceeded to give her a loving thump. Ah siblings...

Happy Thanksgiving everyone! Remember to wear your eating pants!!

Tuesday, October 06, 2009

The Things I Wish For.

I've been feeling a lot of mixed emotions lately. Excited when I witness tangible displays of Max's progress, contrasted with moments of clarity where I see just how different my little boy is from all of the other little boys. Earlier this week, when I picked Max up to take him for his usual afternoon of therapy at blueballoon, I noticed that there was a note taped to his cubby at daycare. On further inspection I saw it was an invitation to a birthday party. I quickly realized that Max had not been invited because he was actually considered a friend, all of the kids in the class had been invited. For a second I thought "that's nice that they included Max, but he probably won't be able to handle it". Then I shook my head, and thought, "he may not be able to handle it, but we have to give him the chance to try". This party is at one of those big indoor madhouse-gym places, with slides and bridges to run across, places to bounce, and lots of ways to burn off steam. In actuality, Max will probably love it.

I called and left a message to rsvp, thanking the mom for inviting Max, and also explaining that Max is Autistic, and that he will probably enjoy it, but if he is having a hard day that I hoped they wouldn't take offense if he wasn't able to stay for the entire party. It is important to me to give Max the same opportunities that his peers get, that he be included. The older he gets, the more likely it is that he will get excluded for being different. I hope and pray and wish for that not to be true, but I know that as kids get older, they are less accepting of kids who don't "fit in".

For now, Max seems to be well liked by the kids at his daycare. They don't mind that he doesn't really play with them. They accept that he seems to get special treatment at times, and that he gets visits from special teachers that are only there to see him, and not everyone else. They don't hold it against him when he acts disruptive, and they don't question that Max gets picked up during nap time every day. He even gets the odd hug from the girls in the room (we can't expect them to resist such a handsome boy now, can we?).

When I look back at pictures of Max as a baby, I remember very clearly all of my hopes and dreams for Max. I still have hopes and dreams for him, but they are different from what they used to be. I just want him to be happy, feel loved, and to have all the opportunities in the world. I never want him to feel like he doesn't fit, or that nobody "gets" him. I never want him to lose that smile, that pure heart. I want him to be surrounded by people that see all of his beauty and promise and love him for everything he is. These are the things I wish for.

Monday, October 05, 2009

I Dare You Not to Smile.

Gadget Girl strikes again (checking my blackberry email and texting my boss, no doubt):
I can't say "no" to her now, how will I manage when she actually starts asking for more than her "baba" and to be picked up?
Was there ever any question who was running the show?

Sunday, October 04, 2009

TKO. Autism For the Win.

This past week has tested every thread of my being. I'm not sure if Max is coming down with something, is bummed that summer (what we had of it) is over, or is just acting like a three year old, but his behaviour has been off the charts. And not off the charts in a good way. Off the charts in a way that makes you want to scream "Okay Autism, I get it. Uncle. You are stronger than me. You win. I give up!". But that isn't an option, so you lick your wounds, gather your strength, and live to see another day, another battle.

If I had to describe Autism, I'd say Autism is a Mixed Martial Arts fighter, straight out of the UFC. Autism will kick you when you're down and thinks nothing about punching you in the back - right in the kidneys. I've been fighting this way too much by the books, more like an amateur boxer in the Olympics. I've been playing "nice", following the rules, and I keep getting surprised by the low blows. I have to remember that Autism takes no prisoners. Autism will trip me, spit on me, break my arm even after I tap out, and most of all, Autism seemingly never sleeps.

Sleep is my achilles heal, and Autism knows this. When Max doesn't sleep, he's off the walls, and I am left without the strength to manage him, to cope. Add to that a baby who needs me too, a full-time job, and a husband who is also worn out from being in the ring fighting Autism with me, and you have one beat down Katrina, who this week, was left cowering in the corner, my face a pulpy mess.

So, what to do? Try to get some sleep. Then gather my stamina, bring in the big guns, and pray that this next week I am stronger than Autism. After all, I can fight dirty too.