Looking back, and going forward.
It's getting closer to the end of the year, and 2020 is almost upon us. I am constantly trying to push myself forward without looking back... But sometimes there's a need — and a constructive way--- of looking back in order TO move forward.
I have had an idea in my head for years about somehow using my art to form a “Creative Alliance for Autism”. I was very close to forming a non-profit group back around 2007. My wife and I were so very involved in the community support of parents of kids with autism. Times were definitely different back then.. There were a lot less resources to help with kids with autism. When our daughter was diagnosed, there was no form of insurance or financial help to get therapy. It was a rough ride. Now, there seems to be a lot more awareness and resource surrounding autism.
That being said, I do still see a need for more specified awareness— such as; the difference between high functioning autism, and lower function... That is to say, there are some people with extreme forms of autism who could never live alone unsupervised. Our daughter is in that category. She could never be on her own… There are so many unimaginable things she could/might do that could harm herself if left to her own devices. Most people who know her realize that.
The idea of an alliance of creative people with loved ones afflicted with autism was mostly born out of the fear of what my daughter’s future would look like without us around. I would always paint portraits of her and include them in portfolio updates which would many times ignite the topic conversation with clients. Discussions would sometimes lead to meeting others with similar situations in their family, or they would talk about how their company was interested in donating to the cause somehow, and that I could/should create a non-profit entity as a doorway to setting something like that up to help other families. Alas, the financial breakdown in 2008 prevented me from going any further, and hard times hit my biz— and I never got the thing off the ground. But I always think about it— and wonder how I can somehow use my art to help contribute more to the cause of awareness and support of many others who fear the things I fear.
But there were also other things that changed plans and priorities.
When my wife and I got married, we always wanted to have 4 kids. Sarah was the second child, and due to her autism we stopped there. It was often speculated by some medical circles back then that autism was genetic, and any further kids might be autistic as well. So we just played it safe… Or so we thought. 9 years later, we did end up with a surprise pregnancy— our third child. Another daughter. This time, no autism. And then again, another 6 years later, kid number 4. A boy. Again; no autism.
And here we are. 4 kids. Just as we always wanted. The 2 younger additions are a massive blessing and I like to call them “kids; volume 2”. The first 2 are "young adult” (college) aged now. But these younger ones are bringing so much joy into all of our lives now— even Sarah. During the 2000’s, it was a very stressful time for the whole family with 2 kids. Sarah’s autism was very difficult to manage, and it caused so much strain on everyone that I feel like it even robbed our first born of normal family memories that could have been. We could not go anywhere without Sarah having some kind of melt-down in public, and so it was a very stressful time. She could not verbalize or communicate, and it was hard. (I know a lot of couples who have been divorced from this kind of toll on their marriage).
But now, "Kids: Vol. 2", more than makes up for those times of stress and strife. They all have so much fun, and we genuinely have good family times together. There is a lot of laughter and happiness.
Sarah is a little bit more communicative now in her older years, though mentally she is just a child in a lot of ways. Still very hard to communicate certain things to her (and from her). We are still limited in what we can do as a family (we cannot vacation anywhere) but there are so many other wonderful things in life that we share as a family with the things we CAN do.
I still don’t know what will happen with Sarah in her older years after my wife and I are gone, but I am working hard as an artist to leave something behind for her.. And though I don’t expect the other kids to be burdened beyond living their lives normally, I am confident in the love this family has for one another that what ever resources are there, they will be able to - and most importantly WANT to-- see to it that she is taken care of, due to that love.
And now, to bring this more to the point of “looking back” as well as bringing art into this post; I thought it would be good to re-share on this Deviantart post from the mid 2000’s: (it's a little dated). A look back at some of the fun things we did with my art abilities in the pop-culture circuit. (you can see a young Sarah in the lower right side pic at the show loving the Star Wars goodness.)
Story previously published on theforce.net: "I'll give you a little backstory here; I am a commercial artist who primarily works in the advertising industry... Currently, I do pretty well with that sort of work. But it wasn't always that way... Back in 2002, our daughter of only 3 was diagnosed with autism. Being that health insurance does not cover autism, we went through some heavy hard times financially. But eventually, I made my way to a modest success as a freelance artist. In the process of going through everything, my wife developed a support group for parents of autistic children in our county where we live. As our situation continued to improve financially, we got to know lots of other families who were going through the same painful situations as we did in the beginning. And I realized how lucky and blessed I was to have a God given gift of art ability to recover from our circumstance. And so, each year at our local Motor City Comic Con we set up a table or booth to try and raise funds for these other families of autistic children. It seems to grow each year. Basically, I sell prints of my original art depicting scifi creatures etc. and we also sell raffle tickets for people to win large prints of some of my paintings which are donated by another company. All of the proceeds go to these families, which we have selected to sponsor and help. But each year, I try to create some crazy LARGE sculpture, (out of CUSHION FOAM of all things) such as large dinosaurs, a giant Kong-beast like head, etc.. Well, last year things kind of came full circle with the whole Star Wars connection. I had just gotten my chance to do my first ever Star Wars related job! It was the R2-D2 malboxes for the USPS via one of our Ad Agency clients. Of course, I had brought in framed pics of it at the con to show it off!
And not too far from where we were set up was the 501st display. We were approached by Roger Rehman of the 501st with an inquiry about possibly building a Jabba the Hutt for them. It's funny, cuz that same day I had my autistic daughter with me- at the time she was 8-- and she just LOOOVES Star Wars! And she just loved seeing REAL Star Wars characters up close and in person! She kept grabbing Darth Vader and Storm Troopers by the arm, and trying to "steal" them back to our table! It was so fun to see her as tickled as she was! But when Roger came to me about building them something, I was merely thinking of a smaller trade where my daughter could be allowed to get back in their area and be closer to them. As I started to talk about what I was thinking-- Roger very quickly chimed in about helping push people over to our display to help our cause!! EXCITING! Well, as the months went by, obviously the Jabba was dropped in favor of the Rancor. And so, at this years con, we basically had a set up where we were sort of across the the aisle from the 501st where they displayed the Rancor!! And as promised, the big creature head drew a lot of public interest-- and as they said they would, the 501st directed a lot more people our way!! We are currently trying to do our part in the the whole cause for autism awareness. We are almost finished setting up our government paperwork as a legit non-profit organization (501 (c) 3 status) entitled "The Creative Alliance For Autsim". Basically, it is a place where people such as myself can use the creative industry in which we work to make the right connections happen for other people with autistc children. I have run into so many people in my line of work. Anyway-- thanks for reading. I know it was long... But that's the story! I attached some screen grabs and a video documentary I shot while making this thing. I hope you enjoy!"