Thoughts from this week

When you are the parent of a developmentally disabled adult, you measure successes in increments. Last week, Alan called on Sunday to find out when we were coming to get him for Sunday dinner. We discussed a time, and I was getting ready to remind him to shower, shave, and have on clean clothes when he said, "I prepared. I can use the word 'prepared' because it means ready. I am using a new word, 'prepared.'" It made me happy all day because he is still trying to do new things, however small.

Thinking back over the last 30 years with our son, I see this ebb and flow of emotion. I have written many times about the ups and downs as a special needs parent. My mother and I were reminiscing this week about the intense nature of our parenting journey. I had a few episodes of deep depression - the kind where you cry all the time and can't stop - as a result of dealing with the constant difficulties in raising a young man who can't control his behavior well, including educational issues which are far too numerous to list. My husband has had his ups and downs, too, but has approached problems with a "hunt it down and kill it" mentality. Sometimes that worked, sometimes it didn't. I tended to project into the future. The future is now, and it is not as rosy as I had hoped it would be, but it is not the train wreck I had feared. It is a future that is constantly evolving.

I am again putting aside the "ideal Alan." I sometimes think I spend more time laying aside aspirations that rejoicing in successes. That is not to say that there are not successes, but they are small, and not solid. Behavior under control today is becomes a train roaring pall-mall down the tracks the next day. Over and over we deal with behavior management techniques that we know WILL NOT WORK. Yet every agency, every care giver, ever group home is sure this time will be the charm. There are no answers, no quick fixes. Everyone is looking for that magic bullet, but I don't think it is there for many of our special children.

So many times in the past, I have felt like giving up and then something would happen. I would hear a song, or hear a scripture. Someone would say something out of the blue. And I would know God was speaking. Hold on. Keep trying.

I don't fall into deep depression anymore. I have days of feeling defeated, or exhausted. I see this parenting life through a different lens now: Not as a sprint to the finish line where all will be well, but a marathon walk. One foot in front of the other. And the finish line is not yet visible. I work to love my son for who he is today.

Today, he called to ask for money. Some parenting experiences are universal,aren't they?


  1. "Intense nature of our parenting journey"

    Nice way to put it, Deb. It does get better!


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