A view of autism from along the spectrum

I’m not sure what I hate more: 1) big consumer industries telling me that on the 14th of February I need to show how much I love my wife by spending money on overpriced flowers, cards, candy, and jewelry or 2) recognizing that I don’t do enough of the more important things to show her I love her on the other 364 days of the year. 

We have had our share of challenges recently.  Many have been related to parenting, but work and health issues have been also part of the mix.  It’s during these difficult times that I find myself reflecting on many things, including marriage and commitment.

I rediscovered a song a few weeks ago that has been resonating with me.  It’s a 15 year old song written by an artist who is not exactly famous for romantic ballads.  However, he writes songs that paint images of life in vivid detail and they often includes pictures of our relationships.

The song is called If I Should Fall Behind by Bruce Springsteen.  The song itself is beautiful and his live performance of it, trading verses with the E Street Band, is incredibly moving.  I’ve seen it performed live and recently rediscovered live versions on CD and DVD.  The recorded performances are as moving as seeing it live. 

So, Lee, here’s a sampling of the song and the thoughts I’m holding onto this February 14th:

We swore we’d travel darlin’ side by side
We’d help each other stay in stride
But each lover’s steps fall so differently
But I’ll wait for you
And if I should fall behind
Wait for me

Now everyone dreams of a love lasting and true
But you and I know what this world can do
So let’s make our steps clear that the other may see
And I’ll wait for you
If I should fall behind
Wait for me

Bruce Springsteen

Let’s keep moving together and waiting for each other. 

This week, 9 year old SJ said that he wanted to write a comment about autism on my blog. I told him that if he had something to write, he could write a post. Here it is, unedited:

I am a kid with autism and I come up with tips on things. This will make hope for autism. Here are a few places that you can use tips: karate, home, movies, and horseback riding. Here’s one: try your best!!! Here’s #2: stop if you need to. Now, for #3 (in case you play a game): quitters never win, and winners never quit.

My last post criticized the publishers of Parade magazine for inferring that there is no hope for Autism.  Much of my writing on this blog is intended to be hopeful, but it is unrealistic to expect us to be hopeful all the time.

I’m not suggesting that we give up hope, but I propose that parents of autistic children should not feel burdened to always feel hopeful.  No parent should feel such a burden.  Parenting, like all aspects of life, has it’s ups and down, it’s emotional highs and lows.  The emotions that I feel as a parent include joy, hope, anger (usually followed by guilt!), love, disappointment, happiness, and frustration.  If we characterize one of the emotions we experience as hope, we must recognize that we sometimes experience a lack of hope, which some may call despair.

None of these emotions are, by themselves, good or bad, and I propose that it is healthy to allow ourselves to experience all of them when they occur.  Trying to fight them or push the negative emotions under the surface usually results in more serious problems. 

Of course, acting on the full strength of these emotions can also lead to problems.  Making decision in the throws of joy may result in setting completely unreasonable expectations and set us up for a significant let down.  Decisions made during times of frustration or despair could cause harm to ourselves, our loved ones, or our relationships.

When it comes to emotions, both the positive and the negative, I’ve found it best to "ride them out".  Riding out the negative ones is harder and tolerating the pain associated with them can be very challenging. 

While I consider experiencing all these emotions to be normal, we must also be continually watchful that the emotions do not consume us.  Experiencing depression or despair that does not pass is a sign to look for professional help.  Continually shifting between extreme emotional highs and lows is a similar indication.  Some studies have shown that parents of autistic children may be more likely to experience depression or other mental health issues than other parents.  We should all be alert and get help quickly when we need it.  We owe it to ourselves and our children.

As you can tell from the tone of this post, it’s been a tough week. I am experiencing some despair that the current educational placement for one of the boys may not work out.  I know that the remaining options are inappropriate and fighting to build a new placement from scratch would require an intense amount emotional stamina, perhaps more than I have.  It’s a tough situation, but my wife and are devising multiple strategies to help and enlisting the advice and assistance of others we trust.  The hardest thing for me to do is avoid dwelling on the pain that would be caused to MJ should another change of school be needed.   The easiest thing to do is simply to be there for MJ when he needs me, today, tomorrow, and everyday. 

Yet, in the midst of all the worries, today I was also able to experience the joy of watching 9 year old SJ ride a bike, without help, for the first time in his life.  I’m hopeful, that by spring time, bike riding will provide another opportunity for physical development, and shared family time.