Lampposts, Loved Ones, and Letting Go

This has been a blog post I’ve had in my head and heart for about a week.  It’s with a sort of irony that today is the day I decided to actually compose it.  Over the week or so, things have looked so bright and happy.  It’s amazing sometimes on what an unbalanced platform a special need parent lives.  I read a blog post this morning that sort of pulled my mood into the muck and mire.  It was written by a mom of an autistic 13 year old who was musing about her worries about the future.  I HATE that I cannot shake that feeling of sadness; but perhaps I need to take a look at my blog title here and focus on that last part.  So now onto the post……

Some time ago, my son’s developmental pediatrician told me of two documentaries about autism, both available on Netflix.  I finally watched one of them last week titled Loving Lampposts: Living Autistic.  It was a documentary about autism and the many views society has on it; it focused on people of all ages who live with autism and how it affects their lives.  What I loved about this film was the positive spin it put on things.  It tried to dispel society’s view of autism as a “sickness” or “disorder” and look at it more as a “difference”.  It put accountability on society to learn to accept rather than fix autism.  Many times we are so very focused on “the cure” and “the blame” that we forget about “THE PEOPLE”!  I’ve often noticed parents and caregivers over the years who are so focused on finding out causes and at whom to point the finger, that I wonder if their time would be better spent helping out their own child; getting to know his/her likes and dislikes, the things he/she CAN do, and trying to unlock the potential that is inside instead of throwing blame around.  A point that really struck a chord with me was that over the years there have been SO many things that claim to lessen or eliminate the symptoms of autism.  Almost every idea I’d heard of was mentioned in the film – hyperbaric oxygen therapy, gluten/casein-free diet, elimination of preservatives, going 100% organic, chelation, secretin, choosing not to vaccinate, DAN! doctors (who are not covered by insurance by the way), etc.  The truth of the matter is, NONE of these is proven to “cure” autism!  It’s MADDENING to listen to parents who are so staunch about telling each other what they should and shouldn’t do!  NO ONE is in the same boat.  Not long ago, a friend of mine posted a question about her son’s medication on Facebook, only to be met by one of her “friend’s” tongue lashing about how she controls her daughter’s symptoms with diet and supplements and how she should look into this rather than depend on meds.  Seriously?  I know I blogged about that before, but that is EXACTLY what parents DO NOT need to hear, PARTICULARLY from each other!!!  We feel judged enough by society already, and we don’t need friends or family trying to tell us what we should and shouldn’t do.  To the readers of my blog, if you have the means to watch the documentary I’ve mentioned, please do.  If you have other friends, acquaintances, co-workers, or family who would benefit from learning more about autism, please recommend it.  Several years ago, I was at a bachelorette dinner sitting with a friend of the bride and telling her about Michael.  She had NO idea what autism was.  Believe me, defining autism is no easy task.  This film does a great job of showing it without throwing in the doom and gloom that the media likes to portray.

For a couple of weeks each summer, usually about mid-July, my siblings come to visit in South Florida.  I have two sisters and a brother.  One of my sisters lives in Orlando, one is just outside Atlanta, and my brother lives in Los Angeles.  They all coordinate to try to at least spend a few days here at the same time.  Both of my sisters have children (all boys) and the kids have the time of their lives when they are all together.  Their ages (including my boys) are: 5, 8, 9, 10, and 11.  Now let me say that my immediate family (meaning myself, my husband, and our two kids) are not regular summer vacation travelers.  This year we did spend Memorial Day weekend at a beautiful resort on Captiva Island, but made no travel plans beyond that.  The last few years, we traveled to visit my sister in Georgia for the Fourth of July, but since the 4th fell mid-week this year, we skipped it.  We’re just not big travelers.  I know people who have visited a different group of states every summer, others who spend it in time-shares, and others who travel the country weeks at a time to sight-see and visit theme parks.  Our big event for the summer is seeing all the cousins, aunts, and uncles.  It doesn’t matter if we spend the day in my parents’ pool, go bowling, eat ice-cream – whatever.  We just enjoy ourselves.  We’ve gone on a few trips together to various beaches around Florida and that’s been a blast, too.  But it’s no less fun when we just stay put.  I truly feel blessed to have this around me.  Every day I log onto Facebook and read about all the places my friends and acquaintances are going, the things they’re doing, the fun they’re having.

The “Fab Five”

And yes, I won’t lie, I know that many of those experiences are impossible for us to have as a family due to Michael’s affliction.  But at the same time, I don’t feel like I’m missing out.  And I know that our kids aren’t missing out – from the minute school lets out, Christopher is counting down the days until his cousins arrive.  They love each other and have so much fun together, I just know they are not missing out on summer fun just because they’re not on a cruise or zip-lining or riding America’s tallest roller coaster.  Now, am I condemning all who do those things in the summer?  ABSOLUTELY NOT.  Rather, I am embracing the differences among families and the way they find happiness.

I’ve spent a good portion of the summer working on little projects around the house.  The first and biggest was my “decluttering” project.  I went room by room each week and filled bags and bags with unnecessary junk.   While I was decluttering my home, I also found myself decluttering me.   It was time to start clearing out some of the old negativity I’d held about certain things, people, and, well, myself.   There are things worth holding on to, and things better off thrown away for good – an obvious observation when deciding which coffee mugs to keep and which to toss.  But when you feel yourself getting dragged down, you have to look at the things that are worth keeping in your life, and the things that it’s time to cut loose.  Maybe it’s an attitude toward a friend, maybe an unwillingness to say “no” which leads to stress, maybe it’s a tendency to get stressed too easily.  But whatever it is, it can be an enormous relief to just let go.

There are just three weeks left of summer.  A new school year will be here in the blink of an eye.  We’ve already done our school supply shopping – school shoes will be next!  We’re finishing up doctor’s appointments and soon it will be time to start classroom set up.   Here’s hoping this tail-end of summer is full of fun and sunshine!   

Facula

Facula: n. /ˈfakyələ/ a bright spot on the surface of a planet

A bright spot appeared in our little world on Friday.  Actually, I should say that a bright spot got a lot brighter that day.  Sometimes amongst the chaos and difficulty of life with a special child, you get rewarded with an unexpected surprise.  Then you get an affirmation that, hey, you must be doing something right. Christopher participated in a baseball camp this past week.  It was a program run by a long-standing and well-known baseball academy founded by an ex-Yankee player.  Young players from all over the country attend this particular baseball academy throughout the school year and in the summer.  This year, the program, known as the Bucky Dent Baseball School, ran a camp at the athletic park less than one mile from our home.  Players from all over the county and into the next one came to attend.  The ages ranged from 7 to approximately 15 years old.  The players were divided into two large groups (by age), then those two groups were split into two teams each.  This particular week (by pure coincidence) the teams were the NY Yankees and the Boston Red Sox.  I happened to be there when the kids got to pick their team (thank God Christopher made the right choice – GO SOX!).  But I digress……..

After a week in the hot South Florida sun, playing baseball and training from 9 to 3, the week ended with a nice ceremony where the kids received a certificate of completion and a photo taken earlier in the week with one of the Miami Marlins players, Logan Morrison.  Then, unbeknownst to the kids (or the parents), the camp staff announced that they would name four MVP’s for the week – one from each team in the 2 age groups.  They were careful to explain that this honor had nothing to do with skill, speed, accuracy, or stats.  This honor had to do with character, listening, attitude, and sportsmanship.   I sat listening and thinking about my little baseball player sitting patiently on the ground.  With so many other kids there – many who have probably played more intensively on travel teams – I really had no high hopes of Christopher receiving this recognition.  Although I know in my heart that Christopher possesses all of those qualities, I figured that after only one week, it wasn’t likely that his coaches would have gotten to know him all that well.  Well, wouldn’t you know that the FIRST name called was “Chris Enlow”.  How is it that such a little recognition like “MVP” from a week-long baseball camp can make someone ecstatic?  And no, I’m not talking about Christopher……..  Yes, Christopher was THRILLED, but as his mom, I felt a sense of pride in that sweet boy that can only be described as heart-swelling. (I must add that the other boy who received MVP in this age group from the Yankee team was Christopher’s teammate for the last two seasons, both coached by my husband, so I feel pretty proud of Mike too for helping develop these two awesome kids’ sportsmanship!)

Let me explain that Christopher was born an old soul.  I have often felt that some part of my grandfather, who passed away a few years before Christopher’s birth, came back when Chris was born.   Christopher used to make this funny face when he was an infant that was the picture of his great-grandpa.  Chris began to talk very, very early and spoke in full sentences almost immediately.  We were once at a family gathering when he was two years old, and one of our cousins remarked that she couldn’t believe the full conversation that she was able to have with him.  He began to read when he was 3 and at 8 years old, now has the reading level of a high school freshman.  (I hate braggarts, but this is my blog so I can be obnoxious from time to time.)

Yes, he’s smart academically, but the most remarkable thing about him is the endurance and tolerance he has developed since practically the day he was born.  When Christopher was 3 months old, he was dragged to Michael’s first set of psychological tests.  He sat patiently in his little carrier/stroller, only cried to nurse once, and listened to his brother scream and cry for almost 3 hours in the testing center.  He has observed Michael’s behavior his entire life; I have never once heard him utter that his brother is “weird”, “annoying”, or “strange”.  Autism is part of ALL of our lives – and Christopher has the advantage of not knowing any different.  Sometimes I wonder if that makes it easier for him than for us as his parents who didn’t grow up with a child who was different.

Christopher has developed more character at his young age than some people will have in a lifetime.  The empathy and love he has for his brother is awe-inspiring.  He helps Michael put on his seatbelt in the car every time we go somewhere; he assists Michael in the shower; he gets up at the crack of dawn and keeps an eye on him when we are still sleeping in on the weekends.  Most of this he does without even being asked.  Recently, there was an incident at the ballpark where Michael got accidentally hit in the face with a bat by a boy in the dugout and broke a front tooth.  Michael was a little upset, but Christopher was the one who broke down into hysterics.  He was so worried about his brother and couldn’t be consoled until we were assured by the dentist on the phone that he could fix it first thing the next day.  Earlier this school year, Christopher’s class completed a religion activity where they had to write about someone they would pray for.  Christopher’s paper reads: “I will pray for……..my brother, Michael, because he is autistic” – to which his teacher added the written comment “You’re such a good brother!”.  That paper hangs proudly on our refrigerator and may never be taken down.  Christopher was also given an assignment to complete a biography project on a famous or historical person.  Christopher chose Dan Marino – for two reasons.  One – he’s his daddy’s favorite football player (Super Bowl ring or no Super Bowl Ring!), and two, he’s been a key figure in the development of programs for autistic children in South Florida.  (For those that don’t know, he has a child afflicted with autism who is now a young adult, and has worked tirelessly building a special center, lobbied in the state capital for insurance benefits, and countless other things.)   One part of the book report (which was done on a posterboard) states:

Dan Marino has done many important things to help people with autism, like my brother. 

A few months ago, Christopher met a new friend who also has a brother with autism.  Their mother is a close and treasured friend of mine and the boys hadn’t really ever met.  We went over for a playdate one day, and within an hour, Chris and his new buddy were planning sleepovers.  I have never seen two kids with a connection like that.  I don’t even think they talked about their brothers or autism.  It was like something just connected them together; both younger brothers of special boys who have developed character, integrity, tolerance, understanding and love beyond their years.

** On a side note, I am reading a wonderful book called How to Be a Sister: A Love Story with a Twist of Autism, written by Eileen Garvin, a woman who is the sister to another woman with autism.  It’s so interesting to read about the sibling views.  My sixth grade literature class this year was assigned the book Rules by Cynthia Lord.  It’s a young adult fiction piece about a 12-year-old girl living with an 8-year-old brother with autism.  It was a FABULOUS read and the students learned so much……..plus their teacher has a lot of passion about that subject.  😉