The Autism Chapter-a personal note

Life is full of so many chapters. So begins another one for our family….

On this past July 26th, 2012…. my heart broke. It really did. I thought I was prepared for any outcome but I wasn’t. When our son was 2, his paediatrician had concerns as he was not speaking at the level he should be, and she had a hard time getting him to pay attention to her, she wanted to rule out Autism. We did all the right things (so we thought), went to the next level after level and were told he was ok… that it was just a speech delay, and maybe possibly ADD, but that was too early to tell. Then after a year of pre-school, and waiting over a years wait to have him further tested in the public system, we decided to pay privately and go to the Able Clinic. Last week to my surprise, we were given a diagnosis of Autism for our 4 year old son.

Specifically PDD-NOS. Its still very fresh, and I’m not sure why I’m blogging about this quite yet since I really have no information, nothing useful to help anyone, or maybe I do? Maybe you are going through something similar or have a friend who is? Maybe sharing with you that we are just as confused and upset as you will help you not to feel alone. Or maybe this is the best way for this to come out to our family and friends. In the past year I have become a bit public, my little biz has taken off like crazy, my entire business is run by word of mouth. And one thing I am known for is my connection with my clients and fans, something i cherish. Something that has become such a big part of my life actually. You may feel like I make you and your families feel special and loved, but you guys, all of you make ME feel loved so, i need to share this on my own terms. My own way.

Just over 6 months ago I became very sick. I came down with a weird, rare, deadly form of pneumonia and was induced into a coma. A lot of you might not know this since its not something I talk about very much, its not something I want to dwell on, but it was then that I realized how many of you really cared about me as well. I woke up to hundreds of messages and well wishes, meals made for my family, flowers and support like I have never seen before. Im truly blessed and have never forgotten.

As I sit here today typing this I am tearful. My chest is weighted. Im mourning the dreams I had for my little boy. I am feeling guilt and anger for not knowing sooner and not pushing farther…. Im mad at myself, and so unbearably sad for him. I know me well enough to know this won’t last. Once I wrap my mind around and learn more about his diagnosis and what our “action plan” will be, I think I will feel then like i have SOME kind of control on helping and raising my baby. Frankly hope and me are BFF’s. It would take much more then this to take us down, but this is a game changer, and its my boy I want to protect. Its what HE will have to face that I can’t stand. We all want our kids to have an easier life, a good, happy “normal” life. There is not a parent on the planet who does not plan and dream of their babies futures, right from conception. What will he be? Maybe a hockey player? A doctor? A teacher?? No one wants to think their kids will be on disability, and not be able to get married or might not have kids, its just not what you dream.. and I think we get to mourn that dream. NOT that I’m giving up! But I need a chance to get there, its just that no one wants their kids to have struggles and feel “different” By no means am I forgetting how lucky i am to have healthy kids, and my heart goes out to you families who have to carry a much heavier load…. your strength astounds me.

What I have learned the last few days is that, Autism is so extremely complicated, (or maybe my brain is far too simple). PDD is under a lot of scrutiny. For some reason its been deemed a “mild form” of autism by some, but I have recently found out through the physiologist and reports that usually means it just looks like that when they are just kids, and as Adults it does not mean much different….. Its no easy answer, or no answer at all. And for the love of god people, its not a “good diagnosis”. Part of me is writing this blog also so that I can address many people at one time. Telling a parent of any child who gets a diagnosis of any kind, is not going to be happy about it for any reason, especially right away. Of course things can always be worse, but this is our CHILDREN, anything that effects them and their futures renders us feeling so helpless. I have heard this LOTS since we got this diagnosis that we should “be happy” its ASD, since we will get SO MUCH FUNDING! Well, right now, I’m not. Not even a little. Dollar signs are the last thing I’m thinking about. The fact that he has to undergo constant therapy is not comforted by the fact that we have been allotted a budget by the government. Im forever grateful for the parents and ASD associations for fighting the fight so when we are thinking that way, it will be less of a stress over the next few years. Im just not there yet.

The funny thing is I thought that it would be good to know, to have closure. I kept telling everyone, I don’t care what it is, just as long as I know how to help him…… but it turns out i do care, and I’m not as brave as i thought. Im not ready to be mighty and take the sword quite yet and lead the next army. Right now my heart hurts and I’m confused from trying to understand what this all means… and I just want to raise the shield.

I could sit here and lie and tell everyone how amazing this is going to be and that this changes nothing, but those of us who are going through this and as I have been learning, we know this is a lie. This is a total LIFE changer…Our children have to undergo intense therapy every day, they have to learn how to behave in “our world” (this makes me sad, all I want to do right now it crawl into his world and be with him) we have to fight to keep them present and we have to fight for them everyday. Now, the fighting part I can handle. The second the Able Clinic said they were giving an ASD diagnoses, my back went up. I was instantly was ready to blast anyone who dare said one thing wrong, who looked a fraction like they were even going to mention anything negative about my baby…. Yeah, this might have happened once or twice already…. and I’m not so sure this is a good thing. But for now its fuelling me to kick Autism’s ASS. I have done the check list, got everyone in motion who is going to help with our little guys future, (thank god for the thousands of parents who have helped pave this laid out road) and of course it being summer, things are a little slow but thats actually pretty good news for us, we have a couple weeks before things get crazy and so that just means we get to forget for a bit and just have fun. (currently sitting at the Great Wolf Lodge with my get up, after the day in the water park wore out all my kids, so I’m typing this while my babies, all 3 of them are napping lol) <--ok I have a Mojito in hand too, nap times are the best!:)

Yup, the next few weeks are going to be spent having fun and making sure we remember our boy is just the same as he was last week. Our boy, the same guy who wakes up every morning and afternoon nap and comes to my office crawls onto my lap and says, “morning mommy, I had a good sleep :)” and gives me a big *squeeze*. The same little guy who signs “you are my sunshine” with me every night before he goes to sleep, and if daddy puts him to bed, has to play the animal game :) (seriously the cutest game ever… its *home made* lol), The same Kid who comes running if his baby brother wakes up crying to let us know, or of he gets hurt he goes and digs into the cupboard and sticks bandaids anywhere he can think to make baby feel better. He loves his little brother, and life is just not the same if he’s not around, and that makes mommies heart warm.
My boy LOVES trains, and angry birds, he LOVES LOVES LOVES water slides we learned this week :) He absolutely HAS to wear PJ’s to bed no matter what (so he now has a little AC lol). His blankie (ok BLANKIES (plural) is his life line, ok he has 4 blankies… lol Im a sucker :P

Now to all my friends and family who are reading this, do not worry, we are surrounded buy an amazing support team. I am so so so lucky to have the friends I do, the doctors and therapists, the teachers and aid workers, and all the connections I have made even shooting for different charities and meeting so many other kids. I have now a ton of great friends who I can go to. Its ironic that I am a photographer for non-profit agencies who fundraise and hook me up with families with kids who have had a rough time, and now here I am. SO many things have led me here…

For example a few months ago we were invited to a friends daughters 16th birthday party. It was a family dinner that was going to be held in a club house. We didn’t know anyone but the immediate family and I politely declined. But they would not take no for an answer. I told them that my boys are a handful and are into everything and that we don’t find it very easy to attend functions like that, but they INSISTED, so we went and gave it a try. Both my husband and I were very nervous. The minute I walked in, i was greeted by the entire family warmly with hugs and was put at ease…… we were introduced to a few other parents with small kids and my boys quickly started playing with all their toys (I stupidly forgot forgot to bring any!!). They had THOMAS the tank engine toys so our boy was in his happy place. I noticed another mom was hovering like me, carefully watching and waiting to pounce if needed, and we instantly started chatting, I commented to her how smart she was brining 2 exact thomas trains, as that would have been a battle for our son, as he does not really understand “sharing”. This mom opened up to me and said she has the same issue, and that her son was on the list to be tested for Autism…. I could see the fear and sorrow in her eyes. I had not really told anyone but really close family about our son also waiting on the list, but I did tell her that night. It was actually nice to share with someone else who was feeling the same way. No one, even with all the good intentions in the world can understand that feeling. The waiting, and the wondering. But the wanting not to know too. My new friend and I have kept in touch and become fairly close. Her son was diagnosed a few weeks before mine, both having been given the ASD diagnosis…. so fate brought us together. This I am sure of.

I want to leave you with a few things that might help you, your family or friends maybe who are going through anything similar. Its a couple of blogs my new friend found, and shared recently on Facebook. Both of these will help good intentions that might be misunderstood. I know its hard to know what to say to a parent who has just found out we have, its a very delicate circumstance. And with Autism, since every child is so different, every child looks different and some don’t look like they even have Autism at all so its hard to know what to say, here is a few things NOT to say… 50 things you should NOT say to autism parents. I had a family member tell me last week that the reason I felt so guilty and did not have him diagnosed earlier was because i was in DENIAL? The things people say are incredible….

And of course if you want to know how to help, check out 50 things you SHOULD say to autism parents. Both blogs are written by Christine, blogger mom and founder of musing of a busy mom living on autism island.

Maybe in a few months when I get a handle on my “sword” and am feeling better prepared I will share a few more of my feelings on this. I am still the same Lisa, I have a wonderful team in place and things with my biz are going incredible, that won’t change too much. I am very lucky i can make my own hours, have an amazing assistant who has really offered to step up and help with anything I need, and my job allows me to work around any new therapies….. If I had not picked up photography years ago and kept doing construction project managing I would have had to take a leave from work and that would have crippled us finically with 3 kids, but thanks to you all, and your continued support and referrals we will make it work and thats just how it was suppose to be… (hugs)

So, thats it. Here we go….

Ready? (not really, but i will be)

Set? (not sure, but I’m working on it)…

Go…...

XO
Lisa Marie