Friday, July 30, 2010

~A Note to Parents New to Autism~

I recently wrote this note to a Mom who was sad because her recently diagnosed child received a discouraging progress report. I thought I'd share my response here too, as there might be someone out there who needs it.


I know you are frustrated, sad, and confused because you received a report on your child recently. You stated that it painted him in a very negative light, and it made him appear to be more severe. You wrote that you saw a lot of improvements in him lately, but they didn't recognize them as significant progress. I do understand your concerns. I promise you though, that where your child falls on the spectrum does get easier with time, because you have more perspective on it as he improves. Please don't let negative comments from professionals discourage you. What matters is that you are continuing to take the right steps to get your child the help he needs to overcome.

Here's an analogy. Let's say you want to create the most beautiful and amazing house out there. So you spend endless time working on it. You are happy with it, and you love it. You know there is room for improvement though, so you decide to go ahead and invite professional decorators, real estate agents, reps from HGTV, etc, to evaluate your house. You want feedback on how things are going.

So they come in, and you're nervous. It feels like your world is suddenly on display for examination. They smile, and they seem somewhat pleased...but in their reports, seemingly tear it apart. Uh-oh. Your windows aren't right, you are missing a piece of tile on the porch, etc. They leave, and suddenly you look around your house and notice everything that's wrong. You thought it was a high functioning, excellent house, but now you realize it's not. It's broken house that needs a lot of help (or so you now think). You cry, complain to others, feel sorry for yourself. Your sleep and eating habits are impacted, and you spend time late at night on the computer, looking for ideas...searching. You have memories of a life that was once fun, but it seems like a world away. Then you sigh, and resolve to get back to work. You pick yourself up, and start working on the house again. What you don't realize though, is that the house didn't change during that whole evaluation/personal reaction process, just your perspective on it did.

No one is perfect. We're all "broken" in some way - we're human. As adults, we don't ask 6+ professionals for frequent, detailed, status reports on how we're overcoming our own issues. I don't know of any other parent who is subjected to such a frequent barrage of "update" reports as the parent of a special needs child. Especially with autism: we've got speech therapy reports, occupational therapy reports, physical therapy reports, ABA reports, school reports, developmental ped reports, etc. The professionals are well meaning, and the rational side of us realizes this - the report is for insurance coverage, it's for the establishment of therapy goals, etc. But the emotional side of the parent takes it to heart. We want to hear about how well our child is doing, what a great kid we have, and a recognition of how hard we are working to make it happen. Thus the purpose of the progress report/eval, versus the emotional need of the parent to read good things, are by nature going to conflict about 98% of the time. (I'll leave 2% open for the random happy parent).

What I want you to know, is that over time, you will become numb to these "negative" evals/reports. They simply won't carry that much weight with your emotions anymore. They become part of an important paper trail to keep your child going with continued services. It'll be like the professionals came in, criticized your house, and your response isn't emotionally charged anymore. You simply thank them for their time, scan over their list of goals and ideas, and nod your head. No tears, you just pick up your tool belt... and immediately keep working on it.

Best wishes,