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……

Hard Days...

Some days are just harder than others...and that sometimes leads to a cluster of hard days and worse still sometimes hard weeks. This was one of those weekends for me -- although it has been a little while since I had a good cry so I suppose I was do.

It started out 'hunky-dory.' I mean does any long-weekend ever start out hard? Although there are tricklings of things I am afraid Michael will never be able to fully experience for some reason this weekend felt like an overwhelming amount of worries about what he will need to overcome and how that may or may not impact all the joys life has to offer for him. 

I try my best to stay on the postive side of this diagnosis but, with his third birthday coming up fast and his impending preschool start date in less than 6 weeks (I am not sure I am ready to let him go to school - regardless of whether or not he is ready). The combination of both these dates it is too much of a realization that I can't just 'freeze' him right here. I wish I could for so many reasons - right now he doesn't realize things are different for him, and that is something I want to hold onto for as long as I can.

For exampleake his delayed communication (or lack of communication). There are so many times he looks at you with such purpose and tells you just how it is hands and all!!! Other than the few exceptions when I can't figure out what he is asking for, I am pretty confident he thinks he has full fledged conversations with us daily. I don't know that I ever want him to realize that this is not exactly the case

Or how about the 15-20 hours a week spent doing therapy. Tasks that come all to easy to his sister who is spouting off new words weekly if not daily is taking him weeks/months to try to accomplish --- and her vocabulary is well surpassing his at this point. That of course might be adding to the 'tough' piece of this whole diagnosis as well. As much as I truly enjoy watching Gabby grow and develop - she is just amazing!!! - with each new accomplishment it only highlights where we are still trying to achieve the same milestones with Michael. I know, I know all children develop at different rates and even without this diagnosis it is highly unlikely they would track through lifes events exactly the same ...but it is still somewhat disheartening to watch.

On-top of the 'ignorance is bliss' environment I would like to maintain for Michael forever - the world outside of his immediate surrondings is not always nice -- and I would love to keep him here forever sheltered from the at times 'unnice' world.

Sleep..........

Speaking of sleep I am off to bed........have a great night!!!

Wow..................Parenthood

So I don't remember anyone ever telling us just how hard parenting would be .....and I am positive the bags of flour in High School definitely didn't illustrate the difficulty. Apparently, Austin was born long-ago enough to have forgotten most of it except for the occassional memorable meltdown. I have figured out a way for people to figure out how hard raising kids is before they decide to have children.  It is designed as an opportunity to attend a one-month "children" boot camp. Once signed up someone comes to live with you for a month and bring you through the stages of childhood. 

Week 1:
The Infant Year:  the person just follows you around and tells you to do things and mid-task has you have to run and do something else. Oh, and of course just wakes you up every 3 hours and makes you stay awake for
Week 2:
The Toddlers Years: Throws everything you own everywhere and has tantrums (at home, in public, in the car, whereever). Bonus: begins to let you get sleep every other night.
Week 3:
The Childhood Years: Pees everywhere when going to the bathroom except in the toliet. Only has a breakdown 2x a week, wants to do activities always. Bonus: Now sleeping through the night!!
Week 4:
The Teenage Years. Basically just asks you to empty out your wallet daily, gives you attitude and leaves their dirty laundry all over the house

Changing Perspective

As the audience that is aware of Michael's diagnosis continues to expand there are phrases I continue to find peoples response more and more odd. Two of the most common are below:

• I'm sorry
• Did they say to what degree?

So starting with "I'm sorry" - I am sure I would have used this phrase before and I think it is probably the polite thing to say rather than just standing there in shock. Initially, I don't think it struck me as odd but, as we settle into month 5 post-diagnosis I don't think there is anything to be sorry for and I sure don't want people feeling sorry for me.  We have an amazing, fun, loving 2 year-old boy -- that alone is AMAZING! He has provided us with the opportunity to gain a new perspective or rather put things back into the perspective that it belongs.  Out of curiosity since I use the word sorry in my day-to-day life I looked up the definition:

Webster.com Definition:

1: feeling sorrow, regret, or penitence

2: : mournful, sad

3: inspiring sorrow, pity, scorn, or ridicule

 

If I take a closer look at the definitely I know I don't want anyone's pity. There are days were I am mournful of all the goals and dreams that I had created for Michael before he was even born ... although I still hold them close just in case this life takes us places I never thought it would.

So the whole question of mild vs. severe just seems like an odd question to me. Well - and we have no idea. I don't know if we don't have a degree of autism because of his age or what. For now we are just focusing on the improvements we are seeing and hoping to build on them.  I think what strikes me as odd on this one is does it matter? Would you feel worse for me if you he was diagnosed as severly autistic or would you be able to dismiss the diagnosis if it was mild? It just seems like an odd questions because, if I had an answer I have no idea what would be the next response.