Hope, Despair, and Everything in Between

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.

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7 Responses to Hope, Despair, and Everything in Between

  1. VAB says:

    Good post. It’s a tough thing, but as you say, it’s part of the package. I agree that we have to roll with the emotions, but at the same time, I know that not all of them are useful in large does (once you’ve clocked up a certain number of hours of worry and despair, spending more time on that group of emotions may have diminishing returns).

    When I was going through a bad time last year with our guy’s school and looking for a new place, I had so much worry, and really awful fears for the future. I didn’t sleep much for several months. It was really useful to get myself out doing things that had nothing to do with parenting. In particular, I went skiing, but anything engrossing would have done as well. I like to think I did a better job of navigating the educational system because of it, but I don’t know whether that is true. What I do know is that the outcome was no worse for me having forced myself into activities that took some of the worry off of my mind for a while.

  2. Kristina says:

    I think we’ve been having a very similar week (topped off by a behavior on top of a bruise this morning, with a fast recovery to being calm)—-and long bike ride. Sometimes I feel as if I’m going through every possible emotion all the time in one short hour.

  3. Marla says:

    We go up and down and around and around with emotions. My husband just looked at me a minute before I came to this post and said, “I feel so hopeless with M’s seizures right now.” Yup, we are in that zone right now. Feeling like our daughter can’t catch a break. It will pass though.

  4. Casdok says:

    You are so right, emotions do go up and down over the years. But underneath it all i am always hopeful. :)

  5. Patrick says:

    Casdok beat me to it, but I won’t fret too much.

    There is always Hope!

  6. babs m says:

    Can I add you to my blogroll? I have a lot of different autism as well as parenting sites… :) come visit sometime!

  7. But, then (when all is (supposedly) said and done…

    there is always still hope.., (big sigh here)..

    but (as an artist), i always sey – you can not know when art might just heppen -boom! out of the box -things do happen; and of course we (as humans are wont to do) we focus on all the things that can (and more than likely will) go wrong.

    but, if we have the courage, and the will – just to get up and “go on” ,, like “Didi” and “Gogo” in Beckett’s “Waiting for Godot” – as long (another big sigh here) we get up and “”go on”” – as artists, we “pick up the brush” ONCE again and go on – but, always with hope. translate to your own venue,

    frank.

    (hope-always-hope-and-with-art-as-our guide)

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