Some days are ear wax

I read an article that compared living with autism in your household to Bertie Bott's Every Flavor Beans. Some days are raspberry cream flavoured while others are ear wax. It’s so true.

I have been lax in posting since Mr B’s diagnosis in late February. Partly because I don’t know what I am feeling, the emotions are so different from day-to-day it’s almost impossible for someone with limited writing talents to put into words. Some days I am so frustrated that I want to scream “F%&K YOU” into the face of the next poor unsuspecting stranger that I pass on the street, or collapse into a puddle of tears when the dude at the café across the street from the office takes my morning coffee order. Then there are those post card days where he audibly says “bye bye bye Mommie” with that big grin of his when I drop him at daycare, then gets up on a chair and waves to me out the window while I drive away. To hear him say “Mommie” without prompting is beautiful music. I know there are some moms out there who wish their child would stop with the mummy, mummy, mummy, while tugging at you all the time – but for me, I love it. Mr.B just started calling me Mommy… 3 years I waited to hear it, so right now, I can’t get enough!

Most days are a crap shoot for me more so than him. We have our routines at home that keep him pretty secure and happy. Now that the weather is nice and he can spend hours outside that has made a world of difference for both his moods and his recent development. As for me, I am trying really hard not to define him by his diagnosis. It is surprisingly more difficult than it sounds. Now that we have an explanation - EUREKA! a reason for all the things that seemed just not quite right with Mr B, it’s difficult not to cling to the diagnosis as a crutch. There are days where I want to track down the parent of every child he pushed or scratched and show them the Developmental Paediatrician’s report to assuage the guilt I feel for how aggressive Ben has been in the past. Realistically though, what does it matter? Ben is Ben and sometimes the only way he can express to another child that he wants them to be quiet is to push them. I don’t condone it and when I see it happen I always explain how that is not acceptable and then tell him to give hugs sorry (he can’t say sorry yet, but I think he understands the sentiment). I wonder, do I tell the parent that Ben is autistic and doesn’t have words to express things so he uses, sometimes aggressive, actions or should I care what they think? My son is a sweet and adorable creature and I want everyone else to see that too. You can see where there is a certain schizophrenia when it comes to parenting a child with autism, one moment you feel the need to justify every little thing to everyone, then the next moment it’s, ‘screw everyone’ Ben is Ben.

I love Ben unconditionally and I always will. I am also fiercely protective of him. As much as I am happy just chugging along slowly with Ben’s therapy, trusting and believing that one of these weeks, things will just click for him, I am also quite cognisant of how tough the school setting will be. Right now, daycare is a safe place, all the children and the teachers know him, and generally know what triggers his aggression. They also accept that Ben does not talk very much and generally prefers to play by himself or with the teachers. One of the little girls in Ben’s class will often give me a report of how Ben was doing that day. Just the other day she told me that, “Ben did all the actions for Itsy Bitsy Spider today and he was laughing a lot”. She has also told me once that “Ben had is hands in his pants ALL day”. Too cute. Once he is in school the protective daycare bubble will be gone and he will likely be subject to cruel teasing by classmates and older children because he is different. If that starts happening, it will be hard to resist the urge of going on a Godzilla rampage at the school. Between his severe communication delay and his late December birthday, those were my 2 main reasons for holding him back from JK this coming September. I am hopeful that once the OCTC therapy begins he will progress enough to be less obviously “different” when he starts school. I am also investigating private IBI therapy in Ottawa. It will be many years before he gets anywhere near the top of the provincial wait list, so private is the only choice because waiting is not an option. Hey, this is why both Fred and I work, budget and save, so we can provide a comfortable life for our family and be able to offer our children as many advantages as we had growing up and more. If private IBI therapy will make even the slightest bit of difference in Ben’s progress, then we will do whatever it takes.

We are now on the OCTC waiting list for both Speech and Occupational Therapy. I expect that the new baby will be born (August) before anything actually gets going for Ben with that. I have been stalling a little on the private IBI search, only because I am 7 month pregnant and everything seems harder these days! At the end of July I will be off work counting down days to baby and also I hope to have arrangements made by then for Ben. I am counting on myself to be a stronger mother than I was when Ben was born. I am also counting on my family and friends not to let me fall so that I do not fail Ben, fail our new baby or fail them.