Take Time To Dream and Live
By Wendy Frye
We were well into our parenting years the first time we took a real break from our "unique" routine. Our way of life, with autism in the home....well, lets just say it was a rarity to move in a group LET alone consider just WHAT it would take to achieve one of America's finest family pastimes - taking a vacation.
Our eldest son, diagnosed on the autism spectrum at the age of 3 1/2 years old, was making measurable progress. He found his voice in his 8th year - and was being released from physical and occupational therapies at school. Now, I don't think I need to detail the herculean efforts poured into this young man to get to this place - or feel bad about the $90,000 outlay. We took personal debt (aka credit cards) to a whole different level. But Man! Oh! Man! we had finally made it to a positive, measurable milestone. What a perfect time to pause, take a honeymoon from all the therapies per se, and quickly celebrate a little bit of progress.
It was our last purchase made on the last line of credit we had available - a trip for four to Disneyland. And was it ever worth every single penny PLUS interest, fees and the stamps to mail in payments! Well before Mickey Mouse got pissed and quit handing out VIP passes to families who could use the extra time and assistance, we were able to secure that very golden ticket to fast-tracking the park attractions. While I had to physically force my eldest son to stay with me on the first ride (yep, that was me manhandling my son - don't judge unless you live the life, friend) soon after that, he was hooked. We finished 16 attractions that first day, going on to have a delightful dinner in the French Quarter of the park and ultimately enjoying the best vacation of our lives.
James, who turned 20 this January, went on to complete his education. And now, as with all things Autism, we've had to change up our family plans to assist him in his chosen career, as an artist. We are now knee deep in Special Needs Trusts, Business Plans, Vocational Rehab, Employment Support, Job Studies, and on and on.....
(Heavy sigh here)
If there was one thing I regret out loud, it's not remembering to look back and reflect more often. In the relentless pursuit of recovery, the sheer angst of being a parent helpless to ever understand what "normal" family life is, thats when and where we missed it. We simply missed stopping to turn back to GAZE at the amazing accomplishments of a young man who was working harder than anyone to plant his flag. So, take pictures, lots and LOTS of pictures! Stop, pause and reflect every once in awhile, and go ahead, do it! Take a jump off the listing carousel we know as life, and give the sword a pull from the stone ~ you'll never pry it loose unless you try.
"The soul never thinks without a picture." ~Aristotle
Visit James Frye's website at JamesFryeArtist.com.
Hi Wendy, A lovely story, Good Luck James.
Posted by: Doug Stables | January 30, 2014 at 07:52 PM
Thanks for the great story here.
My son saw a Disney Cruise ad on TV (running for a while now) and one night he looked mom in the eye and just started repeating "Disney cruise, mom, dad". This is outside the usual echolalia thing. He really wants to go. He's googling it, finding YouTube videos, etc. There are vacation ads up the ying yang right now, here in the frozen north. But this one struck something. We told him we would go - don't know how, and just the fact that he's showing some genuine interest kinda took us by surprise. But we gotta make it happen.
Posted by: Shiny Happy Person | January 24, 2014 at 04:16 PM
Thank you all....he (James) was and still is a handful, as well as Jon, his little brother in the video. But now, as they are older versions of themselves....it's easier..thankfully. Bernadette, you called it, it was something of a symbolic theory of our journey for upcoming Autism parents to think about. We are "winning" - ish. But is winning symbolic as a "recovery"? No, winning for us is a continued road to "betterment"....at whatever level. And yes, we are better...for that we are thankful. Respectfully, Wendy Frye
Posted by: Wendy Frye | January 24, 2014 at 12:24 AM
Awesome work! James you are going to bring back a great era in art !
Posted by: Carolyn Flannery | January 23, 2014 at 06:23 PM
Congratulations, James!
Posted by: Jeannette Bishop | January 23, 2014 at 05:37 PM
James' work is both unique and captivating. I am the proud and lucky owner of his original art. I wish him all the best and look forward to following his career.
Posted by: Linda | January 23, 2014 at 05:03 PM
James radiates positive energy -- at his graduation, and in his art. His choice of vibrant colors and powerful shapes integrated with human forms have a 1960s feel, but his compelling creations are all his own. I hope his fan base spreads far and wide.
I agree that at times parents need to physically guide children through activities they initially find intimidating. Life is enhanced by learning basic skills like mounting stairs or riding elevators, or attempting recreational activities like a carousel or horseback therapy. It's gratifying when, after an initial rough exposure, one's child seeks out an activity independently and completes it with confidence and pleasure.
Resistance to certain activities is instructive. Sometimes even when those on the spectrum see their family come through an activity safely, that cognition may be outweighed by conflicting thoughts, which could be addressed in therapy or with calming neurotransmitters such as GABA. Also panic over specific places and spaces could indicate a need for visual learning and/or special glasses.
But other times our kids' apprehension is the same as anybody else's. Our ongoing challenge as medical/behavioral detectives is made easier by parent-to-parent networking. Every time I read an real life article like this, it serves as a helpful basis for comparison. My thanks to everyone who shares vignettes from their children's lives.
Posted by: nhokkanen | January 23, 2014 at 02:06 PM
There is some kind of symbolism here;
One person pulling out the magical sword to become king.
Some - parents are able to pull out a recovery, or partical recovery.
Posted by: Benedetta | January 23, 2014 at 10:52 AM