numbers...

Seeing as April 2nd is the world annual autism awareness day, I thought i`d do my part to help shed some light on parenting "the autism way". Basically, it can be summed up by worrying, waiting, worrying and waiting some more... but I'll let the numbers speak for themselves:  

Months of doubt: 23 

Appointments with a pediatrician before getting a referral with a speech therapist: 3

Number of waiting lists: 4

Months before a clinic called us back: 8 (the other three never phoned back)

Months waiting for occupational therapy and physiotherapy: 3 (we were lucky)

Months wait to see a foot specialist: none... no one wanted to see my son because he was under the age of 5. 

Months wait for the official diagnosis at Ste-Justine`s: 6

Time before we get access to CLSC services: 2 years. 

Wait for the CRDI: 1 year

And this does not include our application for a Mira dog (almost a year now), leg braces (the hospital gave us an appointment with an orthopedic surgeon after seeing his legs first hand), appointments twice a month for four months at Sainte-Justine`s and I`m almost certain to be forgetting a few. This may seem like a lot, but any parent who has gone through the same process will say that we have been lucky. We noticed the first signs very early and started asking questions right away. For the past two years now, I have seen more and more children getting diagnosed, but I have also seen many clinics refusing new patients for lack of specialists. As a parent, we want to understand what is going on with our children so we can provide the help they need. To feel powerless knowing that you have to wait a least a year before getting a specialist`s advice is unbearable. And if that wasn't enough, let`s add all the sleepless nights, the fear that your child is being judged in "normal" social settings (school, playground, public places...), the fees for private clinics, etc... 

So is awareness really important? I say it is more than important, it is crucial. People need to know that autism is an invisible handicap. One that people don`t fully understand at this present time. People need to lend a hand to the parents who are over-stressed, exhausted and overwhelmed. We need to help organisations like Autism Speak so that research can continue to further understand autism and try to identify the signs as early as possible. I wish that all children with autism get a proper diagnosis before the age of 5 so the parents can plan kindergarten accordingly. I wish that parents get all the information about services and financial aid available to them and their child without having to ask. But most of all, I wish that one day I`ll hear my son`s friends say "it`s OK mom, Liam is just like you and me, he has autism that`s all. " 

Layers

In CEGEP,  we  had to read and study the works of Plato, Socrates, and so on… funny how I never find myself in a situation thinking “gee… some ancient Greek dude was right about that one.” However, in the last year I have compared my way of thinking to a more modern philosopher. My  sage of choice is Shrek. Yes, that green computer animated ogre who says he is like an onion. He has layers. Well… I too, like Shrek, have layers. Or perhaps I should say that I had layers.
In September 2009, I was tired of not being able to be the mother that I should be to my son. Not being able to understand his nightmares and tell him that bogeymen don`t live in closets or under beds or that he shouldn‘t talk to strangers. My son was three years old and he could not tell me what he was crying about, where the booboo hurt nor did he understand the concept of danger. My role as a mother is to protect my son and teach him how to protect himself, and there was this unknown reason why I couldn’t do that. I had to find out what it was. So, I made an appointment with my son`s pediatricen but this time with no kids. My son wasn’t sick, but I needed a professional’s opinion. After hearing what I had to say, he gave me a few phone numbers to try and see if I could maybe put Liam`s name on a waiting list for an evaluation. After many refusals and numbers that weren’t in service anymore, I finally got his name on a list. One clinic out of 8.… hmmm. I was told the wait would be three months. I got the call in may 2010 for his first appointment with a speech therapist. The appointment lasted an hour and after she let Liam play in the exam room so she and I could talk without interruption.  She then spoke the words that would change our family forever. The big bad monster that was keeping me from being the mother I wanted to be had a name. “T.E.D.”. Now that term only means that my son has a development problem and to know to what extent we must go to the children`s hospital for further evaluations. After hearing the news, I cried. That was the only moment I allowed myself to cry during an appointment. I couldn’t keep it in anymore because I finally had the confirmation that my instincts were right. My child had something and someone was finally listening to me. It was at that moment that I got my first layer. Our name got put on another waiting list and in  November 2010 we meet three different doctors who studied his case and conclude that my son is without a doubt autistic. Funny,  but not a single tear was shed. I couldn’t cry because I had to stay focused to fully comprehend what we were dealing with and what we had to do next. What was this doing to my son, was any of it permanent, who did we have to call, what does this mean for his future… it was all very overwhelming, but I had to stay focused. So I created another layer and decided that I would deal with the emotions of it all when I could.  Clinics, hospitals, leg braces, etc… and you know what, life just kept on going for everyone. Here is not the place to describe all the things that have happened around me in the last two years, but let’s just say that I had many occasions where I had to rely on my layers to be able to move forward. But as time went by, I was able to find my moments to slowly peel away those layers. In my car after I brought my boys to daycare on my way to work, after hanging up the phone with a friend, in the shower, whenever I had a little moment when I could live my emotions, I took it. Now I can say that two years later I am layer free.
The question that I got asked many times in the last year was “How do you deal with all of this?” and I always answered “ I just do, I don’t have a choice”. But the real answer is “ I dealt with it one layer at a time”.

Rules...

You often hear parents say "there isn't a manual telling you how to raise kids". That is a lie. We all leave the hospital or the CLSC with the practical guide to raising kids ages 0 to 2. Some parents even go to chapters/indigo and spend hours searching for that perfect book that reflects their values and beliefs. So we all have a certain sense of what is good and what is or isn't appropriate. For example, time-outs are good, spankings are bad. It's simple logic. But what happens when the rules just don't apply to your situation? See, in my situation, I have to spoil my child. I have to stop everything and hug the devil out of him when he is having a fit in the middle of a Wal-Mart. I sometimes have to give him ice cream before his supper. And it even gets dipped in chocolat. When I found out that motherhood had thrown me a curve ball and that autism was now part of my life, the best advice I got was from my sister. She told me that from now on the rules don't apply to me anymore. There is the normal way of dealing with children and there will be my way of dealing with Liam. That sentence has kept me grounded and almost guilt free for a year now.Not only do rules not apply to us, but they can't be applied.  I am allowed to use whatever trick I can find as long as it works for my situation. I can easily get away with saying stuff like that because I have papers stating that my son is handicapped. But what about the other mothers who also got their share of curve balls? My friends who have multiples, twins and triplets? My friends who work and go to school at the same time? My friends who are single moms? Do they feel the pressure of "the rules"? Here is my one and only rule for the unexpected: Do whatever has to be done to give the best to your child. Even if it means breaking the rules and having people point a few fingers. Let's be the mavericks of motherhood. Hell, we should even get the t-shirt. So if you see a woman sitting on the floor in between the toy department and the DVDs rocking her crying son because he can't have the Star Wars gun, she is probably not rewarding bad behaviour. She might just be one of those people who can't live life by "the rules".

Introduction

It seems only right that my first post be an introduction of who I am. My friends know me well, but this blog isn't really for anyone in particular or for a specific audience. Actually, scratch that last thought. It is for someone is particular. Me. :-) Between being a mother, wife, housekeeper, part-time therapist, full-time teacher, and so on... I'm feeling like I don't really have the opportunity to process certain things that go through my mind. So this is an attempt to simply put down some of my many thoughts and make room in my brain for other things that I might forget. I mean, let's face it, it's hard to relax in a messy room. Well the same goes for my head. How can I start to relax when my thoughts are all over the place? So let's begin and see how it goes.