Owen and Ben's Journey Through Autism

Owen and Ben's Journey Through Autism

Thursday, June 7, 2012

We are given nothing we can't handle - now repeat...repeat...repeat.

But man, are we ever tested. I think after I stopped crying for days when we were given Owens official diagnosis, I heard from every other person and their brother, with the best of intentions, "We are never given anything we can't handle, you were chosen for this. You are a strong person, you and Ryan already knew what to do because of your employment..." the list went on and on. I have struggled not so much with accepting this will always be a life long battle for Owen, but for Ryan and I as well - we will always be faced with difficult situations, in school, in family get together's,in life, and I remember writing on Facebook so I only had to write it once, "Owen has Autism, and that's ok". I took on this challenge head on, I joined all the Support groups I could find, I gave my information out to other new parents struggling and needing some sort of guidance I thought I could maybe help with a little bit, I held a fundraiser with my family to help pay for Owen's therapy, we never stopped him from being a part of everything a "typical" child would be apart of, playing soccer.. going to preschool, anything and everything.  I truly believe that maybe we were given Owen because the big man upstairs knew we could do it, but twice?

Haven't I been tested enough? Haven't I fought the school system, joined enough groups, spoke in front of enough people to have a bit of a break - not really. When I saw signs with Benjamin, at only a year old, once again, I was told he is so young and just wait.. he could be copying Owen.. but I knew. I watched him like a hawk, waiting for milestones that felt like they were taking millions of years - but I knew. On February 2nd, Dr. Donkor agreed with what I saw, that transitions are difficult for him, that he has Self-Injurious Behaviour when he tantrums and screams, that he appears "deaf" at times because he will not respond to his name, that he is repetitive with tasks, very fixated and hard to distract him, and the list goes on and on.

Yesterday, June 6 2012 - we had our appointment with Dr. Snyder, here in Niagara Falls. The appointment starts off with an hour long assessment of Ben as we observe, and then Ben gets picked up by my mother in law, and we have a 1/2 hour appointment and discuss her findings. Here is the short version of yesterdays appointment:

Ben transitioned into her office nicely, he  had a transition toy fron the front lobby that was a truck he carried in with him.
- Ben went right to the little people house, that had a garage and little people.
- Only played with the car in the garage and out of the garage, in a small space where it was almost impossible to stand in.
- Dr. Snyder made several upon several attempts to call his name - ignored. She tried to engage him in a variety of toys, that lite up, or spun - ignored.
-Tried to engage into pretend play, several times.. feeding animals, playing DR to a doll, having tea - not into it, unless Ryan and I pushed and pushed it.
-Refused to read a book with her, Ryan had to do it with him instead, and had to be fast and stern.
- Flapped his hands like crazy to bubbles being blown.
-Laid ont he floor (she thought maybe he could be tired, but he wasn't, it was 11am) he was stimming visually to the train, truck and cars wheels going by in front of his eyes on the ground.
-a few appropriate words were spoken.
-played catch well.
-Appointment was over, and as we were walking out with the transition toy that stayed at the office, I had to ask for the toy back and he threw himself to the ground, and began screaming and hitting himself in the head.

Results: We stayed not the 1/2 hour after, we were there a full hour, out at 1pm. After discussion, seeing some positives, like his joint attention, starting to be a bit verbal but delayed, he has repetitive behaviour, flaps, visual stimulates, difficult transitions, can not handle crowds, clings to mom, screams at stranger touch, ignores his name and the list goes on - Ben was diagnosed with Autism. We then completed the C.A.R.S. assessment, which is a number assessment, which hits the 3 categories of Autism - behaviour, social and communication, and this is where they are put on the spectrum, you can score 20 and under - not ASD, then mild, moderate and severe. After the assessment, Ben scored HIGHER than his brother, and had a 39 Owen had 36. Different in scores - Ben hits himself and eas his blanket (pica) Owen did not.

I have felt sad yesterday and today. I am not sad that we can not do it, because we can and we are. I am sad because it hurts, it hurts that my life and his life will continue to be full of appointments and therapies. It hurts because I don't know if I was ready not to have another child, this made the choice for me. I am upset because Maddie might have resentment, she is literally my only child without Autism, and the poor girl wants it because she doesn't understand. I am sad because this effects my job, my life, my marriage, my family - my children. I am sad because I can't fix it, I can try and make it easier, but I can't fix it for him. I am sad because I don't know his future, much like his brother. I am sad that I cry and cry because I am mourning, and I have a wonderful husband that tries his hardest to make me laugh and look at the bright side and I want to be like him right now. I am sad because our lives are going to be consumed by therapy appointments and payments for therapy until they are funded.I am sad because I try to be so strong, and even sometimes I need time to grieve.

So, yes... I am sad... but like I keep telling myself, Vanessa, this too shall pass.

Think of us tomorrow at our fundraiser, I could use all the positive thoughts and prayers you all have right now.

Fundraiser for therapy costs for Owen and Ben is being sponsored by my Union from Bethesda, CUPE LOCAL 2977, at the CAW Hall, On Bunting Rd, St. Catharines, ON


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