Me: "Who has the best seat in the house, me or daddy?"

Adam: "Well, Daddy's is nice, but yours is best. Your's is squishier."

Monday, July 20, 2009

The good, the bad, and the hourly

I have a 12 year old son. A year ago he was (finally) diagnosed with Sensory Integration Disorder. The diagnosis came after 10 years of searching for help with this little boy who seemed to literally be miserable in his own skin. Over the years we have called him difficult, spirited, lively, challenging, hyperactive, porcupine, cactus, and so many more, though of course never to his face. And for all of these years I have been searching for answers. Why wouldn't my baby let me stroke and cuddle him? Why did he never have stranger anxiety? Why didn't he sleep? Why did he tantrum for four hours straight, destroying his room and actually taking apart his furniture? What was wrong with our son?

We read books and websites, tried parenting classes, elimination diets, allergy tests, and special schools. We took the blame. He was this way because of his traumatic birth, or perhaps my post partum depression. Maybe we were poor parents in general, or maybe it was our very DNA.

It was during one of those thousands of difficult days that I received one of the greatest parenting gifts I have ever been given, and it came from my husband. Exhausted from my constant quest to find the source of our son's problems (believing that therein would be the map to the cure), my husband spoke up one afternoon. This is the gist of what he said:

"Stop looking for what's broken. Maybe this is just who he is. You need to stop waiting to have a "good day", because every time he has a melt down, then it becomes a bad day. Maybe you need to start looking for the good hours. We can have those. Because if you keep waiting for one entire good day to happen, you will never have a good day ever again."

At first I was angry. As a self proclaimed perfectionist I fought the idea that I could not, someday, arrive at my desired destination, with a perfect, calm, well-behaved child smiling at my side. But I was tired, and somehow the idea of a good hour seemed like wadding in a tiny but cool trickling stream on my long walk to my imagined ocean of relief.

As my mind shifted around the idea, my whole world changed. I eventually learned to recognize, then to embrace my good hours. I realized there were a lot of them. Bath time was usually a good one, and Disney could always be counted on to provide me with one or two more in the form of a VHS. The hour after naptime usually was a peach, and playing outside was a guarantee, for as long as it lasted. I found the spaces between those moments, still as difficult, challenging , "spirited" as ever, to now be speed bumps between my good hours, and I could live with that.

It would be years before we would learn that our son had a nameable, definable, measurable condition, complete with therapists and all their cool gadgets, but by the time they entered the picture, I had found the thing that would help me the most in all these years.

In the past year, I can actually think of two whole days that were good, start to finish, by my old definition. They were awesome, and I was thrilled to know that they were actually possible. But if I look over the past ten years I see progress and growth, for my son as he struggles in his skin, for my husband and myself as we figure out how to help him, and in my development as a mother and a human being. And that is good, too.


rebekahmott said...

Wow, this is a very touching blog. I think that being a mom is the hardest thing to be. I loved how your husband said to look at the good moments. What a great insight. I hope that you continue to find ways to help your son and yourself to have good moments.

Anonymous said...

Thank you for this inspirational story. My son just turned two. He has always had some traits that we saw as 'somewhat off' but tried to look at him as his own individual and see the humor in his wanting to walk in circles over and over, carry colored cups everywhere, and have little tantrums when we tried to get him to transition. Something strange happened about a month was like a light switch went on and things haven't been the same since. The happy little boy that simply had some 'off' moments became the boy who gets angry when I try to sing with him, angry when I won't pick him up and dance with him to all his favorite songs, angry when I try to put on his raincoat or other uncomfortable textures, upset when he has jam on his hands, and furious when it is time to transition from one activity to another...that is when the melt-down comes. And, he cannot soothe himself. He will drop to the floor, stick out his tongue, put a finger on his tongue, stare straight ahead and cry inconsolably for several minutes sometimes a lot longer. He cannot tell us with words why he is upset, he simply tantrums. We had an early intervention evaluation and they diagnosed him with Sensory Integration Disorder. They told us he has social, emotional and communication delays. It is very frightening how it seems like this came on overnight and simply gets worse and worse. My husband doesn't want to see it. I can't look away from it and I have been having a very hard time with it. This is why your story is so inspiring to me...I have to remember and focus on the good moments and acknowledge that they will come! Be patient I try to tell myself. I think your story will help me.