Thursday, February 21, 2013

Surviving the early years - with "AUPTIMISM"

As most of you may know, Limefreckle Jr. has Autism. His official diagnosis is PDD-NOS, (pervasive Developmental Disorder - Not otherwise specified) but when the DSM-V replaces the DSM-IV, PDD-NOS will no longer be a diagnosis.  I guess that means that Limefreckle Jr. is cured?!?  No, instead it means his diagnosis would be ASD (Autism Spectrum Disorder) 

A lot of Limefreckle Jr.'s childhood is a bit of a blur to me.  I so wish I had been a blogger back then, I see so many moms of kids with autism blogging now, and think that is such a fantastic way to work through all the craziness of your life.  Sadly, i didn't blog, I didn't write it all down, I just put my head down and plowed through it.

And it was hard.  Meltdowns happened pretty much every single day of his life, during the ages of 2 and 3.  I wondered if perhaps we should pad a room in the house so he could meltdown in safety.  Everything pissed him off.  It was hard to know from one day to the next how to handle life, I just learned to try to roll with the punches, and anticipate what I could. It was a tough's a bit of a blur now, I just remember often, at night, when he would wake up in the middle of it, I would go to him, cuddle him, rock him, and I would think.  Only the types of thoughts that would enter your mind in the middle of the night...worry, anger, despair, was a hard time.  I didn't really know what I was doing.  He was my only child, this was all I knew, and I hunkered down and tried to get through it the best I could.  The biggest regret I have about that time, is I was so scared, so immersed in the unknown, that I feel it all sort of slipped by me, special moments not captured, pictures not taken, life not immortalized. But it is what it is...

I do have pictures of him from those days, but not a lot.  I don't have much video, what was I supposed to take, video of him melting down?  I remember as a new mom, I was into the baby book big time ready to record every sacred moment in his young life....first foods, first friends, first words.....but then they didn't come.  He said a few things, now and then, but it stalled.  And we all wondered.....what is happening?  Why isn't he talking?   At 18 months, we approached our family doctor with questions.  She referred us on to a Developmental pediatrician, and the diagnosis came.....

It was a very scary time.  I immersed myself in the "world of Autism".  I spent endless hours on the computer, joined different online groups, tried to educate myself the best I could about Autism.  I had no idea what my son would be come...I worried that he would never talk.  We consulted Speech therapists, occupational therapists, phsycologists, behaviour was a dark, and exhausting time.

Fast forward 10 years.  Limefreckle Jr. is almost 12.  He's an AMAZING  boy.  He talks, perhaps too much (be careful what you wish for!).  He's thriving,  and just keeps continuing to do so.  The future is not quite as bleak as it once was.  I still worry OF COURSE, I'm not sure that will ever stop, and probably doesn't for any mom. But I've learned to relax a little.  He still has those meltdowns, but now instead of everyday, they are every couple of months.  It's a LOT better.

When we first told Limefreckle Jr. that he had autism, he seemed to take it in stride, after all, I don't think he really understood what we were talking about.  Then one day he said "I have "AUPTIMISM" and it hit me like a ton of bricks.....yes you do.  We all have Auptimism.  We are Auptimistic about your future.  The world is a big place, there is so much for you to learn, to explore, to do.  We refused to let a diagonsis define him, to define us. 

So if you are a new mom, and you have just been introduced to the world of Autism.....try to take a beat, take a breath, and not let this new diagnosis define you.  There is plenty out there that can scare you to death if you let it.  There are plenty of people that you will come across that have different views than you.  There are plenty of "experts" that will tell you things that you might not agree with.  They may scare you.  They may make you feel hopeless. Celebrities speak out, and while it's nice to see that they are people just like us, it doesn't mean that their experience is just like ours.  I prefer to get my advice from an expert that I connect with, an expert whose opinion matters to me.  I try to make it a practice to only take advice from people that I can trust.  When I first started to find help for Limefreckle Jr. I met a LOT of, shall we say, "interesting" people.  To be quite frank, they SCARED ME!  One psychologist I met had me in tears by the end of our appointment.  This was back when my son was about 3.  He didn't seem to hold out much hope, he felt the situation was very serious, he was more interested in knowing if I had a problem raising a child that, for lack of a more politically correct word, was mentally retarded.  He made me doubt myself, feel I had to explain myself...."but I just want to find help for him" I cried, exhausted and exasperated.   There were more meetings like that.  More psychologists and so called professionals that I just couldn't connect with.  I finally started to ask myself this question before I trusted the advice I was getting from anyone, be it a professional, a teacher, or a fellow mom.  "is this a person that I would want to spend time with?  Is this person someone whose opinion I would value in any other setting?  Do I find this person to be genuine, and someone I would choose to allign myself with, if I met them in a different life?"  And something interesting happened... I stopped listening to those people who didn't make sense to me, and I started listening to my gut.  I would look at Limefreckle Jr. after every encounter with someone whose words didn't ring true to me, and I would realize that he was the very same boy he was before they put doubt into my mind.  Their words didn't change anything, they were just words, just opinions, just THEIR opinions.

It didn't happen overnight, but it got easier and easier to listen to my gut, and to weed out those people who couldn't help me.  I stopped trying things because I thought I should, because I had heard it worked for children with autism, and I started finding the right people, the right settings, and the right interventions for him.  It wasn't easy, it took time, but finding people of like minded attitude I believe is a very large part of the reason he is the boy he is today.  I let him lead the way, he helped me in determining what would work for him, and what wouldn't.  I learned that there are LOTS of different interventions for Autism, and what works for one child, might not work for another.  I let Jr. help me to figure out what worked for him. 

His teacher took this picture of him a few years ago, and it remains one of my favourites.  I see a special glint in his eye, and I'm reminded when I look at it, that he is his own person, with his own unique abilities. Some that I already know of, some that I have a glimpse into, and some that I'm sure will be revealed to me all in good time.  He is a work in progress, and he is becoming a masterpiece!


Alicia said...

What a wonderful post. My stepson was diagnosed with PDD-Nos about a year ago. His symptoms are a little diffeerent then your sons. We struggle on a day to day basis with his behavior. If you don't mind I would love to email you in the future. Our family really struggles because of his diagnois. Anyway thank you for sharing.

J and A said...

I love this post. I work at a school for students on the spectrum and LOVE my job. Your son is lucky to have a mom like you. Happy weekend.