Wednesday, February 8, 2012
Autism sucks - but its not the end of our world.
Today, I return back to work after 6 days off. Those days off flew by, through the crying, the talking, the informing people - it seemed like yesterday that we officially found out - a week ago tomorrow.
In the past 6 days, I have experienced loss, support, and unconditional love. You can not force people to understand and expect them to understand what you are going through .. you have to take the time, and have the patience to sit down and tell them exactly what you and your family are experiencing and going to experience. It was like going through re-play when we found out about Owen, it was the initial reaction from people, "ooo no, we are so sorry". I guess thats how I would react as well, because lets face it, Autism sucks - it tricks you giving you the feeling your child is growing "typical" and healthy, then it sweeps in and changes your world one regression at a time.
It feels like for the past 6 days, it is all we are thinking about, all we are talking about - its consuming our thoughts and lives.. more so than when Owen was diagnosed. The difference this time, now we are prepared, we are knowledgeable, we know what we have to do - Owen gives us hope for what Ben could be. We unfortuantely also are aware of our horrible wait lists in Ontario, Owen has 1 yr left on the list, and Ben will have a close to 3 yr wait for services - IF he even qualifies. Our thoughts are consumed by Alberta, the opportunities we could give them - unfortunately leaving our family and friends behind would be the price we would have to pay.
I run through the appointment last week with Ben in my mind, I replay everything they said to me, the videos I showed them of Bens behaviour and the pictures - why would I do this? I don't blame them, but of course because Ben's older brother has ASD, maybe he learned it from him? No. Ben is displaying behaviours we have not seen Owen display in over a year, and Maddie would have been the one to copy her brother and didn't (for the most part). You have to take the Doctors head on, I knew what I was talking about, I knew I was watching Ben replay Owen 2 yrs ago, almost to the day, we have always known he was developing slower then he peers, and we got an answer, like Owen - an answer I already knew but when they confirm it, the punch to the face feeling is immediate.
A day after Benjamin was diagnosed, I brought him and his brother to my nans for a visit, as Ryan took Maddie to see, "Beauty and the Beast" for a date. I remember last week my feelings were very hard to hide, my emotions were written all over my face for all to see and judge - there was no hiding. My grandpa was watching me, and watching how I was responding to the boys - and he said to me, "you need to stop looking at Ben like you are made at him". He was right, and I cried. I was so hurt and overcome with anger with God, the universe, the Doctor I knew was right, my family and friends - everyone, I was mad at the friggin world for doing this to us again, how could we be one of the 1 out of 500 families to have 2 children with ASD - have we not been through enough, have we not been shit on enough? Yes - I was thinking this, no I was not positive and optimistic - I was pissed, but when he said that to me, I grabbed Ben and hugged him as hard as I could and I whispered, "I'm sorry, I'm here".
This doesn't change my unconditional love for him, this changes nothing - I had to remember, this will make us more close then we have ever been.. and after a HUGE cry after I left my grandparents, I felt inside I was getting back to the mother I have been in the last 2 years... Fierce, advocate, fixer, optimist - but a good cry (or several) was much needed, and will continue to be sporadically.
I feel like I am ready to get back to work, the initial lonely feeling is gone, Ryan and I are much more open with our feelings and thoughts this time compared to last, and we just want it being dealt with - that's the hardest part.