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Sunday, February 24, 2013

On Being Useful

This is the true joy in life - being used for a purpose recognized by yourself as a mighty one; being thoroughly worn out before you are thrown on the scrap heap; being a force of nature instead of a feverish selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy.  ~George Bernard Shaw

Yesterday I had a meeting with my first “client” in about 11, yes that's right, ELEVEN years. He’s not paying me much (who would after being out of work for that many years LOL), but I had a productive and satisfying discussion with him over coffee and bagels at a gorgeous rustic coffee shop in the Santa Ynez Valley (where they filmed the movie Sideways).  On the surface I am helping my client Greg to write a business plan for a gourmet food market and deli. But really, I am helping him to sort out his next steps in life, providing him with a framework and sounding board for making decisions about his career, inheritance and family dynamics.  It is thus rewarding work despite the low paycheck, and  through it I am re-discovering my talents as a consultant, analytical thinker and communicator.

As I drove home alone from the meeting, a smile on my face, I took in the stunningly beautiful day. The air was crisp, the sky bright blue and the colors of the surrounding foothills, ranch and vineyard country were straight out of a Renoir painting.  Then the change in my energy levels hit me. I was inspired, energized, pumped up, hopeful, optimistic, satisfied. I had clarity of thought, the likes of I have not had in a long time. I felt a real sense of accomplishment. I recalled that in recent months I had been feeling this way more and more and it felt really good.  Contemplating why this was, I then realized that over the last 8 years, I had forgotten what it feels like to be  “useful”,  for lack of  a better word.  I have always believed that raising my children well is the most “useful” thing that I can do in life, but that does not mean I have always felt “useful” doing so. In fact, most times I feel like I am “useless” when parenting. The “useful” feeling that I had forgotten is the one that you get when you are contributing in some way to society, by using your brain and talents, the intellectually stimulating and productive kind of useful (and no, raising children is NOT intellectually stimulating no matter how you slice or dice it). 

I am well aware now, although this was not always so, that the first few years of dealing with Finbar’s autism, coupled with raising his infant brother nearly sucked the living energy out of me. I was in survival mode for several years. The talents that I spoke of earlier were pushed aside after Finbar's birth and then they were ultimately buried 6 feet under with no hope of resurrection after he was diagnosed with autism and his brother came along. After that I put all my mental time, energy and talents into Finbar’s “recovery”.

It's easy to make a buck.  It's a lot tougher to make a difference.  ~Tom Brokaw

In my darkest moments during the last 8 years though, I did contemplate going back to work. In many ways it would have been easier than staying home and raising my children amidst endless hours of therapy and worry.  I always came to the conclusion however, that my place and priorities needed to be with my children and more to the point, helping Finbar get along in life. Now,  I can’t imagine how things would have turned out if I had not been actively working with his teachers and support staff as I was, if I had not learned the behavioral techniques to get him to speak and respond, if I had not been there to hear him express himself when he felt like it and then take that information and do something with it to help him. We would have never been able to pick up and go to Colorado for therapies that had a remarkable impact on him.  I just HAD to be there, so much so, that (hope I don't offend anyone here) I honestly don’t know how both parents of a child with autism, low or high functioning, can work full time and expect good results for their ASD child.  Isn’t it hard enough to do so with typical children?  I know that having a spouse at home is not a choice that many feel that they can make, but I always want to suggest to people that if they have a child with autism, to stop (working) and pay attention, at least for a while. This is the only shot you have. They are young and they need you.

That said, as my child improves, now at age 8, and I can begin to let go of my worries just a little and think about myself more, I can understand why work is preferable to many and entertain the thought of it myself.  Just doing a small project such as Greg’s business plan has opened up many avenues for intellectual creativity and a sense of purpose that is different than what I can get from raising my children or even trying to find a cure for my son's autism. The thought of being able to be valuable and useful to someone other than my ASD son and his brother motivates me once more so I am literally digging deep to uncover my 6-feet-under talents again.  I am taking courses, networking, applying for jobs, taking a leadership role in the PTA, and I keep working on my book because my writing class is urging me to publish it which energizes me too.  A year ago, I was NOWHERE on these things. I wasn't even blogging anymore.  If I managed to squeeze in a yoga class and a girls night out here and there back then, I was on fire. Now I need more.

The lesson here is that if you have a child with autism or any other special need, as your child improves, you improve. When they are doing well, you are doing well. You are one in the same.   The most "useful" thing that you can do is to take the time to take care of your child first and make sure that they get to a good place, because you really are taking care of yourself in doing so.  And in doing so your child WILL get to a better place and so will you. And you will become useful to others once again.

Sunday, February 10, 2013

“Worry pretends to be necessary but serves no useful purpose.” ~Eckhart Tolle

“Do you worry about his future? I mean are you worried that he won’t be able to live on his own?” my friend asked in earnest from across the table at Peet’s Coffee. Her son was newly diagnosed with ASD and I was trying to provide her with some advice and support.  Hmmm I’m in a good mood and feeling quite hopeful these days… shall I change the subject? It’s early days to lay this stuff on her…No, I have to answer her.  Every parent worries about their child’s future, but she meant, “Do you think your son is going to be able to make it in this world, with all his challenges?”  I can’t recall having truly worried about Finbar’s “future” for some time because when I was at the point that my friend is it sent me into a tailspin to do so.  I have learned to not let myself go to that hopeless place where I worry that Finbar may end up unable to function in a normal working environment because he hasn’t learned to get along with others, work in a group, respect his superiors, or heavens, sit still for 5 minutes. Taking a breath, I admitted to her and myself “yeah, yes I do worry. I mean, you never know.  Things are really good right now, but there is puberty to get through and being a teenager. I mean that’s hard enough for a NORMAL kid, much less ours.  There’s always something around the corner. It’s like a roller coaster. Anything can happen.”  Aw man Jen, maybe she didn’t need to hear that just now…she needs a dose of hope dumb dumb!

Just a few days before, Finbar had made what is in the Catholic Church called the Sacrament of Reconciliation - his first confession to a priest. The process of preparing for confession involves a little soul searching and inward reflection upon the part of the child in order to recognize where and how he/she has sinned.  Children with autism including Finbar think in very black and white terms and this applies to their sense of right and wrong.  They have a skewed view of fairness and justice, often blaming others for their own mistakes or shortcomings.  So admitting some kind of character weakness, “sin” if you will, took some work for Finbar.  It has been a long road getting Finbar to this sacrament -  a year and a half of Sunday school lessons, not to mention a few years of church hopping. But he made his first confession and I don’t think he blamed someone else for his sins when he confessed them to the priest LOL.  I know that having faith in God and the Bible to guide him will go a long way.  So in that case, I DON’T worry about his future.

But then, two day later I meet Finbar’s teacher on Monday morning.  She tells me that his class has been practicing the running of their Dino Diner, a classroom restaurant for the parents to come and eat at later that week. (It’s an exercise in counting money, teamwork and organization).  She tells me that Finbar has insisted on being a waiter. She then proceeds to relate to me how he has had some trouble during practice.  During practice several things went wrong but worst is that he got a table of “the worst behaving boys in Mrs. Birkley’s class” as his customers. These boys figured out that even though they each only had $5 of play money to spend on their meal, they could dupe Finbar into bringing more food (chips, salsa, quesedillas, etc) every time they asked.  Apparently the rascals were having a good ole time putting one over on Finbar who did not realize the joke was on him and who despite their teasing kept bringing the extra food they asked for. And the joke WAS on Finbar because his teacher had instructed the class earlier to remember that “the customer is always right”. In Finbar’s black and white mind, his misbehaving over- ordering, mocking customers were “always right”.  So he continued serving them even when they overspent, even when they laughed at him. Sigh.   Hearing this, my heart sank and I began to worry about his future as I walked home.  How would he learn to cope in the world if he could not read  social cues and understand when people were taking advantage of him? And if these bad boys figured out that Finbar is gullible does that make him a target in the future? Well, I told myself, at least Finbar has a few years before he has to go out and try working as a waiter to save for a car or college. Maybe I’ll just spare him (and me) the agony and give him a really big allowance for the rest of his life J  By the way does anyone else out there want to rip the heads off of boys like that and just deal with their parents later?

But then speaking of boys at school, a few days after Dino Diner, Finbar had his first real playdate with a BOY, glory hallelujah. Up to now the playdate score has been Neurotypical kids: 25 bazillion  Fringe Kid: ZERO.   Last year, Finbar did have one boy sleepover at our house. But that boy was clearly taking advantage of Finbar’s cluelessness by suggesting that Finbar should invite him over to our home for a sleepover. The boy later confessed to me that he essentially wanted to get away from his step brother and step sister for the weekend.  While this was obvious to me, Finbar called this kid his best friend for months, even though the boy was blowing him off.  Doh.   But the kid who came over this week, Tim, appeared to me to be a bit of a misfit himself, later confirming to me that he too didn’t do play dates (Neurotypicals: 25 bazillion Fringe Kids: TWO).  This school year I have noticed that Tim kept trying to befriend Finbar even when Finbar in classic Asperger style would ignore Tim, or worse, say uncaring things to this kid.  For some reason Tim always showed an understanding of Finbar that I have not seen in other boys and that gave me hope. So I finally got the courage to arrange a playdate.  I don’t know who was more worried, me or the kid’s father (the boy’s mother is not in the picture) for apparently this kid has a history of behavior problems and bullying that I only became aware of AFTER the play date was set up.  It went well. It was the first time I have seen Finbar actually engage with another boy from school.  Running together, telling secrets, making snails in the hideout at the park.  True, he ignored his friend in favor of a video game here and there, but overall the playdate went off without a hitch.  When they saw each other the next day, they hugged.

So do I worry about Finbar’s future? Yes, I have been reminded by my friend at Peets and the Dino Diner customers that I do. But I worry just a little less so this week, for he has God on his side and a new friend.  And besides, I don’t expect he'll grow up to be a waiter anyway.  An Aspergerian waiter is really an oxymoron :0