Thursday, October 11, 2012
Today is my birthday.
When I was growing up, birthdays were things I always looked forward to with such relish. It wasn't unusual for me to stay up to 12:29am (my actual birth time) to be the first to wish myself a Happy Birthday. As I've gotten older, that anticipation has lessened quite a bit. Especially after I cross decade marks. But now, I'm 41 years old. I'm happily married with 3 wonderful children and a dog. And I spend most of my time doing what I can to make their lives as wonderful as possible.
Birthdays have become days to think about where I am and where I want to be. What I have been doing right and what needs to change. There are always many things on both sides of that equation. For example, I need to work on controlling my patience and not just handing over phones when the kids get to be too much. But I applaud myself for developing new strategies that have helped Ballerina and Music Man make this transition into kindergarten, at least from the at-home-end. I applaud myself for listening to their teachers and fighting for what I know is right, even if that wasn't an easy thing to do. I applaud myself for teaching my son that lying is not tolerated, a lesson that I believe Big Brother has learned quite well these last few weeks.
Over the last couple of years, I have used my birthday as an opportunity to make a change. A couple of years ago, I proclaimed myself a "Parent Advocate". I'm still not sure what it means (officially), but I feel I have done a decent job at making that change effective. The Autism-based Facebook Page that I run has grown to over 2,100 members. When people ask, I offer my advice based on my personal experience. I have answered questions for other friends who have asked. I have educated many about Autism, and plan to address Big Brother's Wolf den (Cub Scouts) to educate them about Autism as they are likely to run into individuals affected as they grow.
And I fight. I fight for my children. Every day. I make sure that they are getting the services that will best help them. I lose sleep over IEP meetings because I want to be sure that they have the opportunity to succeed and gain their own independence. I have learned to not jump to conclusions (even though that is still my instinct) and to listen before I act, at least in an official capacity.
When I was at my brother's wedding, several family members asked me if I planned to go back to work. My answer was always that I kind of already had with this change. I would like to find a way to actually be paid for doing this (like everyone, we can use the supplemental income), but because my experience is not something that comes from a degree other than in life, I'm not sure that I can find a position right now. I want to help parents, especially parents who are in the early stages of a diagnosis. Parents who either suspect or have just been told that their child is on the spectrum. I want to help them to see that it's not the end, but the beginning. I want to help them to see the POWER of that diagnosis. I want them to understand that Autism is NOT the end of the world, no matter where on the spectrum a child falls. I want to point out the success stories that you can find anywhere, but is somehow very difficult for a grieving parent to see.
You see, I've BEEN that parent. It took a long time before I was able to see the positives of Ballerina's and Music Man's diagnosis and not just going through the motions. And I know that the fears never fully go away. And because of it, those are the people who I feel I can most benefit. I still have to figure out the best way to make that happen, but I'm more sure than ever that I have found my "professional" calling.
If anyone has any suggestions, I'm all ears!