My aha Moment

Been a while since I've blogged publicly. I've blogged a lot but they all seemed to get too deep for me to share at the moment. Lately I've done a lot of soul searching and revelation. It's healthy work, but it's hard work.

It's World Autism Awareness Day today. Likely what prompted this blog entry. I was browsing through video clips of "what autism feels like". I cried. It's hard. Most of the videos show the light and sound sensitivities, the obsessiveness and the social awkwardness. Most of them don't touch on the temper, the texture sensitivities to clothing, foods, etc etc. None of them show the toll it takes on the families. None of them are all encompassing and every single autistic person is so very different. The spectrum is so vast.

One video said that autism affects many more people than many disorders that get much more awareness. 1 in 88 people, last I read, I'm sure it has changed but it's still a lot. So be conscious in your actions, be understanding with how you treat people and be compassionate when you don't understand. You could be encountering someone with autism. (Good idea to be kind to everyone anyway.)

One of our biggest obstacles when helping our boys is that with their aspergers, they have an "invisible disability". I can't tell you how many people seem to have tried to convince me that "they are fine" and "are you sure" or "they are always great for me". LOL yes I'm sure they have aspergers. But, through the years, my boys have learned more and more what is socially acceptable behavior, what expectations are and how to self-calm. It's been a long road to get this far and there is still a lot further to go and wow we do have some days that are less than stellar...okay let me change that, we have moments every day that are less than stellar, some days more moments than others. There are still days of mood swings, poo on the floor, no eating, crankiness, stubbornness, no sleeping, I hate you mom, just to name a few. Yesterday, for example, I wanted to run away from home. April Fools Day, even when Adam clearly gave me signs that I should pull a prank on him and I picked a funny one, turned out to be a disaster. Even recently I did an ADHD rating scale for our doctor for Aaron. I also got several people who deal with him on a regular basis to do it. The three traits they measure I replied with markings of 9/9, 8/9 and 8/8. But the three other people individually marked on average 6/9, 1/9 and 1/8. What a difference. I did share the results with them. Yes, it's a victory that Aaron can regulate himself in a social setting quite well, but I wanted to make sure they know the cost to him. At home when he rates high, he is safe to be and feel whatever he feels. It's bottled all day. Still working on finding the right venue for him to release that without it wrecking so much havoc at home.

We try to teach our boys how to regulate their emotions and be conscious of what they are feeling. I often joke that we are teaching them skills that most adults don't even know. But it's essential for their futures. Obviously along the way, we have learned a few things about ourselves as well. I think I've finally come to the place where I can say that this struggle has made me a better person. Given me new eyes and a completely different insight into most things. (FYI I changed the title of this blog entry after I typed this paragraph. This was the aha moment and typing it brought life to something I hadn't admitted until right now.) I've gone through many days, and I know I still will, where I wish it was different, easier, but I can't imagine my life without these two brilliant, challenging, amazing and kind souls. In those moments of despair, amidst those tears, it is mostly for the struggle they will still face in their lives. The acceptance from other people, the acceptance from themselves. It won't be as easy for them. It's constantly on my mind....

...which leads me to this. I know I'm doing the best I can do with what I know. (A phrase that is illusive for so many moms and even in the height of the storm seems so far away. Tomorrow I may not be able to say this, heck an hour from now I may not be able to say this.) That applies to what I do inside my home to help my children. The other part of the acceptance will come from outside my home. How can I do what I can to help the world accept them and other children with different needs? It's part of the answer. It's awareness. It's inclusion. It's the reason I accepted the position of Board President for Foothills Special Needs Association for Parents and Siblings (SNAPS). I don't think for a minute I'll change the world, but if I can help in any way to make the world a little better, is it not my moral obligation to do it? I'm terrified. I want to do a great job. My role is small in comparison to the work they do at SNAPS, but I'm passionate about what they do as an organization. It's inspiring the amount of help they have given to families who are making their way through the maze. I'm a busy lady, no lie or shocker there, but this matters. Not just for my kids but for so many. Before I accepted the position, I told a few friends I was considering it and I didn't get the response I expected. I expected full support, but I got questions on the time commitment. I have to admit I choked back some tears. I thought my heart was obvious, I do wear it on my sleeve. But I get it, no harm, no hard feelings, just different perspective. I'm thankful for the reminder that I do stretch myself thin with my volunteer commitments, my business and my family. I'm thankful for the reminder honestly. It caused me to think a bit deeper to make sure I wanted to do this for the right reasons. My heart is the reason. My heart that I send with my boys wherever they go in life. My heart that stands at their bedside at night and marvels in how calm they look while they sleep, while their aspergers sleeps. My heart that expects the world to provide a place for them.

I have always loved and have taken some refuge in one of my favorite quotes. If we all do what we can...

So that's what I am going to do. Whatever I can do. I hope it helps. I will give it my all. I am inspired by people who find what motivates them and put themselves in a position of service. It is what makes the world go around.

After coming home from our SNAPS AGM meeting the other night, I told the boys that I was going to be President at SNAPS and I doubt they knew what it meant but Aaron was instantly excited. I think he could feel how much it meant to me. Adam was a bit upset and questioned me that I was going to go to work, which scared him because it would be a change. I assured him that no, it was a volunteer position but it helps SNAPS do what they do. He took off to his room and came back with this little handful of change, plopped it on the table and said I should do it and he would pay. What a heart! Validation!

If you feel so inclined, SNAPS is a non-profit, I can personally tell you with all certainty that any and all donations go to help families find their way. We even have a "donate now" button on our website. www.foothillssnaps.org