2013 Autism Awareness Month

This will be our first year celebrating Autism Awareness month and to get us kicked off right we purchase 40 Light bulbs and distributed them in our neighborhood to encourage our neighbors to light our neighborhood blue for Autism Awareness – we will see how it goes. 

Personally, I have supported a lot of non-profit causes over the years and several of them focused on children. Still close to my heart is Junior Achievement, financially I continue to give to the ADA and AHA. This year we are adding a new cause which will be closer to our heart than other causes – and by initial exposure it is also full of families that are underserved in being able to have the resources available to ‘deal’ for lack of better words with an Autism Diagnosis.

We are fortunate in having the flexibility to work from home and have hours that allow us to spend more time with Michael. We again our fortunate to have financial resources and health insurance to get the hours of therapy he requires. On top of all that is the other stuff – getting our lives reorganized (literally and figuratively), having experiencing managing (which comes in handy with ‘managing’ all the therapists), trying toys, buying more expensive gluten-free foods, etc., etc., etc. – but there is so many families out there that don’t have that and very little resources/support systems to turn to.  For me, I realize creating a support system at least for us is probably the most import part of us taking on this new challenge and taking on the good (and bad) days.

So this year I am hoping that everyone will lending a helping supportive hand to someone they know this year that might be going through something that is challenging or difficult. Not autism specific – it could be anything. With extremely busy schedules and the ever growing list of to-dos on your own list I am certain it is hard to find the time to do something extra for that person that maybe isn’t your immediate family member or even one of your closest friends – but, someone you know needs it. 

Is Breaking Down Doors the Right Approach?

We have joined this amazing, unique autism community nearly a year ago and I would say those in the community are just as unique at the children it effects.  My perspective might be different since we have three children, two NT and one with autism (and I accept that). Our life is much different than those with only children impacted by autism but, we have the benefit of seeing both sides of the coin. 

Even being a hockey mom (which the hockey parent community is comprised of 90% Type-A personalities which brings its own dynamic), I have found this community to be ‘intense.’  I have found mostly that parents of children fall into one of two buckets; they are either in the bucket of “roll with it” and use humor to help or they are in full “fight or flight” mode ALL THE TIME.  I find this unique to this parent community more so than any other.  There is this need to make everyone understand and accept their uniqueness so much so that times it is done in what I would consider to be ‘pushy’ manner. Let me give you an example; we tried doing gymnastics with Michael but, his inability to sit for any long periods of time, stand in line combined with his higher than normal gross-motor skills set us up for failing. We tried a lot of strategies and as much as, he loved that trampoline and once every two months we would get a great class in it just wasn’t our place to continue interrupting class with me chasing him across the carpet. This is where I say it had become unfair of us to force ourselves on their class anymore.   We weren’t asked to leave – but, I wouldn’t have blamed them if they had. If they had I wouldn’t have ranted on a blog, gone to the news, thrown my hands up on “How could they? He deserves to participate just as much as the other kids!”  There is just some activities that as much as he might enjoy it in his own way it is so different from the way it was designed to be enjoyed that it isn’t fair to the other children in the class (I do wish they had gymnastics for special needs children because, he did love that big trampoline).  However, for this reason we skipped soccer, we go to the movies long after a movie has been out and at weird times and are looking at individual swimming lessons because, well our needs are different and if it takes away from the other children I don’t know that it is fair of us to make that decision for everyone else's behalf.

This doesn’t mean we don’t continue to push the limits in hopes that he can do more of these things some day. Restaurants continue to be our best example but, when we have crossed the breaking point one of us heads out quickly because, we know Michael is just as uncomfortable being there as people are around us (which is why he is hiding under the table or sprinting down an aisle).   Since, I want him someday to sit with us in a restaurant and enjoy an entire meal we will continue to practice.  Don’t get this confused with I think if he is sitting still, enjoying himself but, being louder than I would like we generally won’t leave.  We pick family restaurants for this exact reason (and not fine dining).

There is a fine-line that I feel like we all know is there but, for some reason I feel like so many in the community have this mind set of ‘this is my life on a daily basis and you will accept it as well’ and they go storming through the line. Yet, there is a million things out there that these same people we are forcing to accept our daily lives are probably also dealing with, yet they aren’t pushing it on us. They are not pushing their diagnosis’s, their every day battles on us to see and accept.  Don’t take this incorrectly, this doesn’t mean hide out in your house or tell your story to other – education is power. I think through breaking down the door when it comes to the everyday public is probably not the most effective way to help our children be the best that they can be or have the community embrace our uniqueness. I think it does result in a very intense environment which isn’t healthy for anyone.

I will leave with if you have to breakdown doors with doctors, specialists, therapists or any other professional to get the help you need – well that is the one place I feel like it is always appropriate. 

‘Autism Epiphanies’

We are a year into the diagnosis and still setting in and every now and then I have these ‘Autism Epiphanies’ you know moments where you realize the impact the diagnosis has on day-to-day activities and what that might mean long-term.  

For example; at gymnastics we came out into the parking lot and there a moms (with kids the same age) standing by their cars just chatting with their 3 years standing right next to them, not holding hands and not running.  At the time my husband was attending with me because we had both toddlers in tow and I said: “Did you see those two women? That will never be us.”

So when these type of things happen I try to stay away from heading down a rabbit hole of all the things that may be (or may not be in most cases) It breaks my heart to think how much more challenging his world is then his peers and the joy of certain things he doesn’t understand or get. Like Christmas – the excitement of being a kid the night before I don’t know that he will ever get to truly enjoy that anticipation. Sometimes I go so far to think he will never fall in love, have a crush or be nervous about a first kiss. There are so many magical moments in our life that we have and they pass by in an instant and only when we reflect do we really understand the magic the moment had.  Although, these thoughts break my heart they also allow me to have a greater appreciation of those moments in my life. I hope that he will enjoy more of them then I think over time or that I can create special magical moments just for him.

Until next time……