Tuesday, October 21, 2008

More, please!

I have spent a great deal of time, at great benefit to myself, engaging autistic adults since my oldest son was diagnosed with autism in 2004.
Aside from simply enjoying the exchanges, and from learning copious amounts about what living with autism may be like from an experiential standpoint, I have perpetually searched for meaningful things that could, hopefully, cause me to become a better parent to my son by their knowing.
Firm conclusions that are somehow specific to autism have been elusive. In fact, and as a polar opposite to the Jenny McCarthys of the world, I have found that parental approaches effective for autistic children are remarkably similar to parental approaches for neurotypical children. Be patient. Be kind. Teach in a way that is effective. Sublimate your own needs for the needs of your child. Form a supportive community. Roll with the proverbial punches. Be prepared to lose a little sleep. Maximize the fun moments, but know when to calm things down. Expect yourself and your child to be disappointed and frustrated sometimes. The list goes on, and is certainly familiar to anyone who has done their best to raise a child.
But ... there is one thing that seems to be incredibly impactful in improving the quality of life for the autistic child/person. This thing is debated from a tremendous number of angles, but in the endgame most folks agree upon its importance. This thing is communication. If I could wish one thing for all autistic people, including my own two sons who are on the spectrum, it is that they find satisfying ways to communicate that expand the boundaries of their interpersonal environments.
My oldest son is an atypical communicator. He is a boy who, upon casual observation, does not move or behave in such a way as to lead someone to believe he may not be neurotypical. But, all it takes is a brief conversation with him to know you are dealing with someone special. Community members who are strangers (ie. cashiers, librarians, friends' parents) are often "thrown off" by J's interactions - they simply don't know how to take him. Still, he communicates effectively if not typically.
My youngest son, however, is not communicating verbally. Developmentally, this is not shocking as he is only 21 months old. Lots of 21-month olds don't speak. At the same time, he is not even showing the vaguest signs of verbal communication yet. Knowing what we know about the importance of communication, we started C on a sign language program a full month before he was even diagnosed with autism. That was in July. It is now October and, guess what? Baby C is signing reliably! Only two words, but they are really important words for a 21-month old to know. The first one is "eat".

There could be no more fitting end to this post that taking Baby C's second sign and directing it right back at him:

"More, please!"

Sunday, October 12, 2008

Spreading Some Sunshine

Saturday night marked the annual "Hoedown" at REINS, also known as "The Happiest Place in the World". I have written about REINS previously, as it is the place we take both J and Baby C for horseback riding.
REINS has one simple requirement for its riders - that they experience a disability. For this reason, our middle son T has not been able to participate. No matter, as he is well known around there for his wit and shiny attitude, and loves to go as much as his older brother. His younger brother is not yet quite sure what to make of the place, but his most recent session went just a bit more smoothly that the prior ones.

It was our great pleasure this year (my company, my family) to donate the fresh flower arrangements for all of the guest tables at the Hoedown. I am fortunate enough to be in a leadership role in a company that is in the business of wholesale fresh flower distribution, and it occurred to me that providing bright, cheery flowers for the all-important, annual fund-raising event is one way that we can give back after all the wonderful experiences we have had there over the years. So for a few days leading into the event, several of my employees who have arrangement-design experience, led by their wonderful manager Leticia, prepared two different designs - one for the expensive "Sponsorship" tables, and another, smaller design for the other tables. Keep in mind that this is an all-outdoor event, western-themed, with an Autumn twist due to its occurring on October, complete with a riding demonstration by some of the students/participants. After having spent that Saturday morning working, I hopped in the big ol' work truck - loaded with fresh flower arrangements - and drove it over to the site of the event, which is right on the grounds of REINS.
With the help of Kaitlyn and Jessica - two lovely ladies who have not only taught J to ride horses but also have helped J and T with swimming lessons over two summers, and have generally become dear friends to our family - we placed all of the floral arrangements on the tables.
I must admit, they did add a certain amount of charm to the whole event.

Flowers aside, the main event of the Hoedown is the riding demonstration. I'll tell you, once the demonstration is underway, there is rarely a dry eye in the place. The lengths that some of these riders go to in order to participate here(not just for the Hoedown, but every week, all year long) is just ... inspirational.
The first rider provided a fascinating counterpoint for our family, in particular. You see, during this rider's introduction, it was mentioned that the youngest rider is under two and the oldest rider is 93 years old! Of course, the "under two" rider is our own son, Baby C. The oldest is Millie, who also has the challenge of Scoliosis. At 93, Millie is the epitome of inspiration for all us young whippersnappers who feel a little bit beat up after a long day of raising kids or conducting business.

The next rider prompted Debbie, the emcee of the riding demonstration and owner/operator of REINS, to bring us all the way back from age 93 to age 5. In spirit, anyway. This rider suffers from Progeria, and her body is already experiencing many of the physically degenerative characteristics that typical people might undergo in their 50's. And there she was, with she and her supporters encouraging her horse to a lengthy trot to finish her part of the demo. And what a great moment to experience the synergy created by an engaged audience and a rider who is so genuinely and rightfully proud of her achievement.

I realize that Hippotherapy (the benefits of riding horseback) lacks any data to support its use as a "remedy" for what ails people. We can talk about core strength and balance, we can observe the bond that develops between some horses and riders. We can call the riding routines "life skills" or "positive reinforcement". All that is predictably clinical, despite the decidedly non-clinical setting, and utterly belies our lack of imagination in understanding what really happens at REINS.
This is a community. No one gives a darn about disabilities here. Nobody is trying to cure anyone of anything. I don't think "warrior mothers" like Jenny McCarthy would find very fertile ground here for convincing people that autism is some sort of tragic circumstance. Everyone loves horses here, as well as people who may not be just like themselves. Work gets done. Funds are raised, without a lot of pomp and circumstance but with the help of the local community. Young, angst-ridden adolescent volunteers who harbor the thought of complaining about the heat and the dust are silenced by self-comparisons to people who have much more than today's climatic conditions to worry about. Adults and children alike find a deep-seated thrill in their mundane tete-a-tetes with their equine compatriots.

Even Dads who are feeling pinched by the responsibilities of raising three sons and trying to navigate a business through a difficult economic climate find reasons here to spread some Sunshine!