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!   

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3 thoughts on “Lampposts, Loved Ones, and Letting Go

  1. Youre so blessed Jen. My kids don’t have cousins they can play with. My sisters kids are grown/almost grown and were lucky I’d we see them every other year. My brother and Jim’s brother didn’t have children. And we have never seen Jim’s sister who lives 2.5 miles away. We’ve lived here two years they said they would visit but never did then it just bdcdme too awkward. Jim’s parents were here for the oldest girls ha graduation and didn’t bother to make any arrangements to see their grandchildren. It breaks my heart but mostly for my own unmet expectations. They’re so good about appreciating the life they have. I’m going to follow your decluttering example and get rid of unrealistic expectations. I’m going to watch the film too. We have three children with autism in our children’s church all at wildly different points on the spectrum and were always looking for the best ways to include them and help them grow in their faith.

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