I was not off to a good start to blogging eh? What a lousy start. A couple of posted blogs and then nothing. Then the writing slowed down and a few never even got posted. I came to the place where blogs shrivel up and die.
Or did I??
The answer is two parts. I was a bit frustrated, lost in researching different areas of therapy for our youngest son Oskar. The second part was working on a big secret project. You see the world of Autism and therapies and everything about it has not changed much in the last decade in “the standard path of care” and on the other hand has gotten way more complicated. I was really disappointed to see this after my first journey down the road of ASD (Autism Spectrum Disorder). We had gotten our diagnosis and were sent on the standard path. I attended a few talks with the local support groups and well, some were good and inspiring, others were well… just shitty! I actually couldn’t believe some of the crap that was being said to new parents and it took EVERY ounce of me to hold my tongue. On one occasion I was completely flipping out inside and again holding back from unleashing my “Kracken” (thanks, Lego Movie) and giving the Administrator of the workshop a quick overview of how they may have screwed these new parents AND their kids out of REAL help and support. But instead, I just asked if the administrator had a child of their own, on the spectrum. His reply was “no”, but that he had kids and of course had been “in this business” for many years.Business??!! Really??!! Well as parents some of us do make a “business” with their journey and that’s great, but HIS business or simply J.O.B. was OUR LIFE!! Our kid’s lives are sacred and should be held in the highest of importance. To listen to someone with a position of authority to just tell some new parents to “take his word for it” instead of encouraging their own research, was actually CRIMINAL!!
Business??!! Really??!! Well as parents some of us do make a “business” with their journey and that’s great, but HIS business or simply J.O.B. was OUR LIFE!! Our kid’s lives are sacred and should be held in the highest of importance. To listen to someone with a position of authority to just tell some new parents to “take his word for it” instead of encouraging their own research, was actually CRIMINAL!!
So what to do… what to do? There is a lot of advice in the “self-help” world that says something like “if you don’t like the way things are changing then make that change yourself” So that’s what I did. Well, we did as a family. We decided that the only way for the general public and society as a whole to fully understand what it takes and the day to day challenges of trying to help and advocate for your child on the spectrum… or really any special needs child… was to open our front door!! Okay, not our actual front door because our house is still being renovated and there is really no entrance up to it… so Open our Side Door to the world!!
The opinion blogs and websites for sharing information is not the only avenue people check out. The other popular way for people to share ideas and knowledge is by video. A picture can share a thousand words, but how much can a VIDEO share eh? I had always shot video of my kids. My dad shot Super 8 video of my brother and I growing up and so I carried on the tradition. Just before my oldest Liv, was born I bought my first camcorder. I have over the years replaced it and then a few years back bought a Digital SLR for photos and video. So even before Oskar was diagnosed we had been shooting video over the years. Then as we were working on some basic interaction games and Play based therapy at home… I thought we should film it all so that maybe one day we could share the progress with other parents.Really there isn’t much discussion or doubt if people can “see it with their own eyes”. Look at the legal system,
Really there isn’t much discussion or doubt if people can “see it with their own eyes”. Look at the legal system, usually if there is video to incriminate someone, it’s kinda hard to argue… “it wasn’t me”!
So we started filming… we filmed the regular family silliness and some weekly videos of stuff I was doing with Oskar. After a few months and he was making some progress (still not diagnosed yet though) I could see the process of doing the work with Oskar, filming and then editing and then eventually putting it into some sort of format that we could get to other parents… this was way out of our scope of skill AND knowledge.We had just watched a replay of To Make A Farm on TVO as per the request of my dad to do so. My dad is like a Google filter, he reads a LOT of articles on the web, newspapers and any television on anything I would classify as “educational”. You will never catch him watching mind-numbing, veg-out tv, time wasting tv. Over time there were more and more channels of interesting science, technology, etc.
We had just watched a replay of To Make A Farm on TVO as per the request of my dad to do so. My dad is like a Google filter, he reads a LOT of articles on the web, newspapers and any television on anything I would classify as “educational”. You will never catch him watching mind-numbing, veg-out tv, time wasting tv. Over time there were more and more channels of interesting science, technology, etc. Well, he just didn’t have the time! Enter the PVR and digital recorders, he scans shows, edits commercials and gets rid of any “fluff” he finds in these already educational shows and news pieces. So when my dad says “you need to watch this” it’s usually pretty good and worth MY time to switch on the boob tube!
I am an avid gardener and now living with more land have been trying to grow more than just flowers over the years. Not to mention trying to feed 5 kids can get expensive, often our food bill is double what we pay for our mortgage! And we never eat out as a family… I don’t like (and my body hates) crap food so any sort of Farm to Table restaurant… well that is just out of the budget at the moment.
So we sat down one night and watch this full length documentary feature my dad had suggested.
To Make a Farm was a documentary directed and produced by Steve Suderman. We really liked the message and the way the cinematography told the story of 3 new farmers. Stef grew up on a farm and with my goals to “farm” our land it just really was a pleasure to watch. But then a few days later, I got an idea. You know, one of those “ideas” that will get your spouse ALMOST rolling their eyes, but they don’t actually do it because they sense if they do… well they will be in big trouble! 😉 So Stef calmly and with no sudden movements, asked me that one spring day… “What’s this idea you have?”
“Let’s make a documentary and get someone else to film and edit it for us!!”
“ok… um… and how do we do this?”
“we get in touch with a director… what about the guy from the Farm doc? Yes… no??!!!” Again, the tone of my voice and the crazy wild excitement I had about my latest and greatest IDEA… Stef just responded with:
“sure… sounds good”
And he was again Spouse of the Year!
So long story short… we spent the last few years being a part of a documentary about what it is like for a family after an Autism diagnosis for their child.
We never planned to be the feature of the film, in fact we had lots of other ideas, but we handed over what we thought and a list of resources to check out. Steve came out and filmed over 18 months, and then had the arduous task of editing all MY and Stef’s ramblings and the hours and hours of video of the kids. The film, titled “Beyond The Spectrum,” is now finished and we think it’s really fantastic!
No spoiler alert here… you will have to watch it on TVO this Fall or buy the DVD when it comes out later in the year. Again, it’s not the story we would have made, but it’s better, because it’s how the story unfolded. It’s seen from the eyes of someone (Steve) who really didn’t know anything about Autism until we approached him back in May of 2014. But really it’s the story of Oskar and we think Steve did an awesome job of trying to get into his beautiful little brain!
I’m really hoping that it will help families feel a sense of not being isolated with their diagnosis. Yes, there are so many being diagnosed today, but it can still be a very lonely. I also hope that maybe it will open the minds of people like that guy that was spouting bad advice to those new parents. Give him a picture of what it’s really like and how he could really help and serve families.
Lastly, I hope those in government positions will watch the film, have open discussions and try to make REAL CHANGE in a positive way and maybe… just maybe… restructure the whole way the Government is serving families. I have lots of ideas on that, but I’ll save those opinions for another post!!
So welcome to my blog if you’re new and to those couple of strangers (and my dad of course) who were technically following me over the years… Great to talk with you again!!! Hahaha!! See you down the Muddy Path everyone!