Friday, August 20, 2010

The Everyday

We’re so taken with the milestones. When you have a special-needs child, there are plenty of things that you wonder if your child will ever be able to do. So when they actually happen - when you hear your five-year-old say I love you, even though it’s echolalic, or when your child sleeps in their own bed, or doesn’t wet it, or when he holds a pencil for the first time, or pets a dog – we note the occasion with much fanfare, and rightfully so. We know the effort involved in making those things happen, how long we waited, how much we hoped. They are nothing less than miracles.

But milestones don’t happen every day, of course. If they start happening every day, they’re no longer milestones. They become part of our daily life, the status quo. They are the everyday. And sometimes I find more hope in the everyday than in the milestones. Why? Because we can’t live from milestone to milestone. We live from day to day.

My son was diagnosed with autism at the age of three and did not start talking until he was five. In 1997, we didn’t know for sure if he could learn to talk. And so when he slowly got started - first with various stages of echolalia, then, when he was using more spontaneous speech, learning pronouns, articles, tenses, and syntax - I was overjoyed. It didn’t matter to me that his voice was always flat, usually expressionless. I figured it would always be that way, and I loved it. I never even hoped that he would develop voice inflection because I was just glad to hear his voice in the first place.

Two years ago, our regional autism consultant created a weekly social skills class for my son to attend at his school, so that he could learn to communicate more appropriately with his peers. The object of the class was to instill conversation skills and teach socially appropriate behavior as well as how to interpret gestures and non-verbal communication. But something unexpected happened, and I can only attribute it to the social skills class. About three months after he started the class, I began noticing that he was using voice inflection. And he was doing it appropriately, not just random variations. He was putting emphasis on the right words and his tone was no longer flat. And he’s been doing that for almost two years now. The boy who, for so many years, could only parrot lines from Disney movies or Scooby-Doo cartoons when he wanted to interact with people is now regularly conversing with voice inflection.  That is my everyday. And that is what gives me hope.

It’s true, the milestones sustain us. They are remarkable, miraculous, and worth every bit of celebrating. But when you sit down and stop to think about it, when you realize, hey, we’ve been using the PECS cards for three months now and my child rarely shrieks at home anymore, thank God, that is your everyday. That is where hope lies.

I’ve had many different everyday realizations over the years. In fact, that one about the PECS cards was one of them, over twelve years ago. Then I had another one a few years later when I realized that we were no longer using the PECS cards. There have been many other everyday realizations, equally hopeful. But now, my son is speaking with voice inflection, an unexpected gift, and that is my everyday. What’s yours?

                                  Tanya writes TeenAutism.


  1. fighting for my childrenAugust 20, 2010 at 2:17 AM

    Thats great! So many everydays. So much to be proud of. I feel the same way about my kids.

  2. Couldn't possibly agree more. It's the slow (god, so slow) build and suddenly you notice the smallest shifts that make the biggest difference.
    And isn't there a blessing in it? In noticing the everyday milestones when so many others miss them completely?

  3. Quote:- "But milestones don’t happen every day, of course. If they start happening every day, they’re no longer milestones. "
    Apologies for hitting a sour note but I'm afraid that's just outright wrong! We've just had a whole string of milestones, three days running!
    Day 1. A voluntary 'I'm sorry'
    Day 2. Clothes on body for more than 50% of the day
    Day 3. Ate Frissee Lettuce [leaflet]
    So keep counting the milestones and keep your inflections uplifting.

  4. When Jeffrey was first diagnosed I new nothing about autism so I had no idea of what to expect or really I couldn't envision the future. Looking he has come so far he can read, is potty trained, knows who everyone is when asked their names and the list goes on and on. Autism forces you to celebrate the simplest things in life. This summer one of his favorite things to do is go to the bank and get a sucker, this is such a big deal for us because he is such a picky eater, but give him any flavor of a sucker and he is as happy as can be.

  5. Sorry, Maddy, I thought I had mentioned some very positive things about milestones in the post. My point in this post is that milestones are not the only things worth celebrating - when certain ones happen on a regular basis, they become the everyday, and I find so much hope in that. But I definitely keep counting the milestones. As I said, they sustain us.
    That's wonderful about the voluntary "I'm sorry" - Nigel's first voluntary "thank you" was less than a year ago, at age 15, and it was an amazing milestone that has become the everyday!

  6. I think what I realize -- and some of it informed by this wonderful, interesting post -- is that milestones, kept track of, are really not as important as the sustained development, the improvements and, I might add, the acceptance of where our children are.

  7. lovely post. good reminder. our current milestones are surly-teenage-boy behavior. love that I can commiserate with the parents of the neurotypical kids.

  8. Someone, somewhere long ago called them "inchstones" on a forum that I was on.
    That's what we celebrate...the everyday, tiny inchstones that are monumentous to us. Amen. I find so much joy in the little things now.
    Mine is my son staying dry during the night time hours only three months after beginning potty training! I'm elated! :-)

  9. I just love this Tanya! Well said.

  10. what a marvelous post
    as I type - my son is bringing me ballons and asking me "mama blow it "
    Its past his bedtime at the end of a chorefilled tedious day but I am aware of only the feeling of living within a luminous gift

  11. beautiful and so true, tanya. thanks for the reminder to look for and celebrate the everyday miracles . your stories about nigel's speech development always fill me with joy and hope.

  12. I love you and everything about you. " Because we can’t live from milestone to milestone. We live from day to day." Amen.

  13. Yippie, we've just hit another milestone today, we feel so good and more so our son is very proud of himself, mind you we haven't stopped telling him how clever he is as his confidence also needs a boost.
    Great Post.