Let’s start this post off with some happy news, shall we?

I got the mouse! Well, * a * mouse, at least…I’m hoping that’s it for a while. What makes this evil, little victory that much more satisfying is that it was truly ME who got the little fucker. Troy was here earlier in the week and he baited the trap and the mouse managed to nibble and lick the peanut butter off of the trap without getting caught. * I * baited the trap and it worked! Hooray! He was pretty big, for a mouse. Must have been all that late night peanut butter feasting, eh? I truly hope he was the last of them for a little bit. I didn’t take my Serc last night because I heard him in the kitchen and was too chicken shit to go in there. * blush* My fear is that I’ll disturb the mouse and it will run all helter skelter like around the house. And yes, I realize how truly pathetic that is.

I have tried to write something several times since my last post but either the words just weren’t a-flowin’ or I was in too bad of a mood and the post would have been “too far gone”, as they say or I was interrupted. I am in no better a mood than I was earlier… worse actually…but I thought I would take some advice my dear Gwen gave a me a long time ago and “blog it out”. Of course, when I blog it out, I tend to just babble incoherently for far too long. You can consider that your warning. Ha.

I took Julian to CHEO today to have his first occupational therapy assessment. I am still digesting all that went down in that big room (I asked her to please use the smaller room since large rooms full of stuff tend overwhelm my little guy…she asked, by the way… but either that big room is ginormous and we were in the little room OR she didn’t listen/remember my preference), which is a huge task in and of itself but is further complicated by the Mom in me.

The easiest way I can think to explain it is that when it comes to my children, and Julian in particular, I have some kind of split personality, born out of necessity. In order to work with his workers and caregivers and doctors and hospitals, I have to check my ego at the door. My heart has to go along with it. I have to keep my eyes and ears open, retain all information and suggestions, be able to do what needs to be done when we leave whatever room or office we’re in and above all, NOT take it personally. I call that persona, “Julian’s caregiver”. It’s not easy. Not at all. But it is the only way. For starters, I’ve never had a partner to go along with me to these things (well, I had Troy in the beginning, sort of…he was more like another chair in the room, believe me) and so I can’t turn to someone at the end of the session to remind me or refresh me because I found it too overwhelming or emotional.

I have gotten very good at perfecting this persona, again, out of necessity. Sometimes the Julian’s caregiver role freaks workers or hospital people out (Mary, the infant development worker who has been working with Julian literally since he came home from the hospital has told me, completely off the record, that other workers and doctors have asked her, “what’s with the Mom?” because I’m so quiet and calm and emotion-less. This makes me laugh). I have had over three years to get this personality down to an art…literally since the day Julian was born.

Julian was born at 28 weeks gestation. His first home was CHEO. He was then moved to the Neo-Natal Intensive Care Unit at the Ottawa Civic Hospital. He stayed in the hospital for about two months before he came home to us, tiny and fragile and requiring a different sort of care than “normal” (God, I hate that word) newborn babies. Julian suffered trauma to his brain when he was born (Julian’s birth story can be found in my janetk’s archives on Blogster…but I don’t recommend reading it if you’re thinking of having children…it’s sorta scary) which resulted in mild cerebral palsy. So the workers that surround us and the frequent doctor and hospital trips are not something that was introduced when Autism was first uttered in my ear. They have been a constant throughout Julian’s life. They are his norm.

It is because of Julian’s history that I can be his caregiver in those situations so damn well. But like I said, it’s not easy. Not at all.

Because the other side of me is Julian’s Mom. And Julian’s Mom and Julian’s caregiver are often not on the same wavelength. So that’s why it’s even harder to digest and fully absorb today’s CHEO trip…first I need to sort out the caregiver parts but I have the Mom in me fighting to be released.

The Mom in me wants to sit on the couch, with a big bowl of ice cream and cry and cry and cry. It is never easy to hear a laundry list of all the things “wrong” with your child. It never gets any easier, either. Because I love him and he is all mine, all mine, all mine. And the Mom in me wants to protect him and shelter him and keep everyone away from him. She wants to let him live in pajamas for the rest of his life, drink from bottles, chew gum like a mother fucker, never make eye contact with anyone, never have to leave the house, never have learn to strengthen his muscles. The Mom is not always very logical, I know. But loving someone with that kind of ferocity rarely is logical. I always have to check Mom at the door because if I didn’t, I would run away, with Julian in my arms, every time.

And I know that’s not what’s best for him.

That little guy and I have been to Hell and back together…most of the time with me riding shotgun. He and I started out alone, together, too (born on a stretcher in a hallway after a wild ride in an ambulance…nobody noticed he was born until we got into the room and for this reason, we will never know what time, exactly, he was born at. And no, Troy wasn’t there) and so it seems fitting, and yet sad, that he and I are alone together through each of these appointments.

But, there is some good news in all of this mopey, whiny, sob-fest of a blog post.

Julian’s caregiver kicked some serious ass!

That might even be better than the mouse thing, eh?

Whenever I get out of one of those appointments, people always ask me “how was it?” It’s an innocent question, for sure, but it’s also so difficult to answer at times, unless it’s a straight forward “great” or “fucking shitty, let’s get out of here.”

My Mom asked me how it went and I summed it up as best I could by saying that during that hour and a bit I learned a few things.

First of all, I am so much smarter than I give myself credit for.

This appointment had been built up for months since Julian was needing OT for so long but didn’t get it until now for a bunch of enraging and yet highly boring reasons. Every single one of his workers were waiting to see what OT said, holding off to see what OT said, hoping for suggestions from OT so that they could start doing their jobs. Hell, OT was * the * excuse for them NOT doing their jobs.

And you know what?

All but one of the things the OT suggested, I was already doing. On my own. After my own research and trial and error.

For the record, she is completely in agreement on most of the things I have been doing, like letting him wear pajamas all the time (when she said this and expressed relief that I wasn’t upset or disappointed that she didn’t have any suggestions for getting him to wear “regular” clothing and was all for the jammies, I said, “Can I get that in writing?” She thought I was joking. All of you know I wasn’t!) and allowing him to chew gum, wear heavy boots and not worry about running shoes, not to mention a constant hat or ear muffs, and white noise in his room to help him sleep (that was my most recent solution and I was thrilled to hear her suggest it because, let’s face it, all of us like being right, righ?).

She suggested giving him a weighted back pack to wear around the house to help strengthen his trunk muscles and also help him regulate his proprioceptive sense (that’s how we feel our bodies and where our bodies are in space). I’ll all for this suggestion and will get on it next week, once the girls are back in school.

But just in case you think that this appointment was a raging success….

There was SO much bullshit to cut through to get to good stuff…the useful stuff… and I didn’t like this woman. Not one bit. She was very, very full of herself and one of those workers who maybe has been at her job a bit too long and has stopped seeing the forest for the trees…or the individual kids for the disorder.

The second way I summed up the visit was by saying that if I had accompanied Julian to this appointment a year or two ago, I would have hysterically crying. I am grateful for the huge set of balls I’ve grown over the last three years. I no longer go into these appointments feeling like everyone knows more than me. I now go into them hoping to work together for a common good and if that’s not possible (and it’s not, unfortunately, a lot of the time because a lot of workers haven’t gotten the knack for checking their huge egos at the door), to get what I believe we need out of them, through their bullshit.

I also learned, for the millionth time, that Julian is one in a million. He is not a page out of a textbook (no kid is, for that matter) and he has broken every mould. He has been called “confusing” by some of the most veteran doctors and workers and a “mixed bag” just as many times, if not more. Just as he didn’t fit a typical CP case, he doesn’t fit in a typical Autism case. And that can be very difficult to convey to workers who are ready to type cast him into a role that doesn’t begin to fit because he has a little from column A and lot of column B and he made a column in the middle of them.

Getting that through to some of these people is the toughest part.

Kinda makes me wonder sometimes who exactly IS the worker….