How do you measure progress?

How do you measure progress? How do you quantify success?

To even obtain a diagnosis you have to go through a great deal of evaluations and measures of performance. It just is what it is and we need to go through this to get services much of the time. It is an overwhelming process that can make one feel as though they are swimming upstream in a sea of chaos. Test scores, ranges of average, eligible scores, etc. The list goes on and on and the numbers can make your head spin.

I am a special education teacher and I am immersed in evaluations and outcome measures all day long. Refer, test, report, repeat. Great families, amazing kids and wonderful co-workers.  That is my teacher hat and I love it!

At home, when I put on my autism mommy sombrero things look a little different. I am on the opposite side of the table listening to others quantify success and measure progress with test scores. Both of the kids go through an annual testing process that involves many standardized checklists and evaluations. In addition, every 90 days the team meets to go over the Individual Treatment Plan where we review progress and add/adjust outcomes. It is nice that I have a say in what is worked on and this breaks down to many hours spent in meetings. It is NEVER stressful and I am grateful that I have a voice in the plan and that they help us make sure we have some maintenance and generalization at home.

I was never surprised by either of my children's autism diagnosis. I knew it in my gut long before the reports were written. On the other hand, I will never forget the first time a psychologist explained to me that not only does my son have an autism spectrum disorder (299.00 in the DSM), but also the axis II diagnosis of mental retardation (318.00 in the DSM). I immediately burst in to tears and told them to continue as I wiped my eyes. It wasn't his delivery, he was just doing his job. I wasn't even surprised. It just stings...

After 9 years of these evaluations, diagnostic criteria, measures of skills met and age levels of performance, I really don't care. I am not woe as me in my corner focused on the news delivered. I am not shaken up by the fact that my 8 year old has the verbal skills of an infant or that my 12 year old writes like a preschooler. Neither one is toilet trained and frankly they are both very globally delayed.

We look at progress differently. It is not all about numbers.

My daughter uses a Dynavox to talk now. One of my favorite memories was when she used her "words" (this is what we call her Dynavox) at the pediatrician's office. When the doctor came in to say "hi" and I told her to say "hi" back, she didn't push the "hello" button. Instead, she hit the "goodbye" button and pushed him away. She did not want to be there and she made sure we knew that. The two of us laughed and appreciated her sassiness. That's my girl!

My son has become so good at requesting items that he can string together 5-7 words to ask for McDonald's or a cookie. This was a child who couldn't do anything but use the sign for "more" at the age of 3. He can now say, "I want McDonalds." We will say "no" and he will say, "I want yellow McDonalds please." We still say "no" and he says, "I want more yellow McDonalds fries please." At this point we often cave. Way to go buddy!

I understand that we need the numbers to get services and to maintain funding and that is fine. I am not sad, they are always better than the year before and that is grand.

Our normal measures progress in smiles and laughter and we have an abundance of that in our household. Life is pretty good. Celebrate the little things...