The More You Know

Knowledge is power. The power to respond, adapt, and grow. Those of you who know me personally know that I'm a bit research crazy. In other words- I like to know stuff. It makes me feel more in control, more able to face just about anything.

About two and a half years ago Diva Girl was diagnosed with Childhood Disintegrative Disorder. I remember going home and Googling and thinking "That's it? That's all the information there is?" because it was the same three to five paragraphs over and over again. The information was brief and the prognosis was grim. For the first time in my life, research had failed me. 

For the most part, we tell people Diva Girl has Autism. The symptoms are similar, they are under the same "umbrella" of disorders, and it's easier for people to understand. We take her to an autism center, all of her friends have autism, and there are even doctors that we see that just consider her a child with autism. But always in the back of my mind there has been this knowledge- she has CDD. We've known that it makes a difference, even without understanding how.

Recently a therapist that has worked with her for a few years told me that after all the kids that she has worked with on the spectrum, Diva Girl is different. She told me it was time to dig a little deeper to find some possible explanations for what we are seeing. So I went home and started looking. And again, research failed me.

I got mad.

And apparently when I get mad I do things that I would NEVER do.

Like email the Yale doctor who is the only one doing research on CDD.

And then call him when he asks to talk to me over the phone.

I thought I was going to hyperventilate. I don't even like talking to people I know on the phone. So talking to a guy who is pretty much THE authority on CDD had me going into full freak out mode.

In the end, I think it is possibly one of the best things I could have ever done for Diva Girl. I finally feel like I understand her, for the first time in over two years. I finally get why she does some of the things she does. I learned about how her brain works and why she has these periods of time when she becomes fearful and emotional.

Knowledge. It's a beautiful thing.

On friendship and farewells

Yesterday I went to a fabulous farewell party for a dear friend of mine who is moving to another state. It will be quite the difference from our current distance, which is a quick walk to the other side of my building. The party was full of good food and old friends that I haven't seen or even spoken to (outside of facebook, that is) in at least a year. In some cases several years. So of course there was hugging, and exclamations over how big their kids have gotten, and lots of "how have you been and what have you been up to?!" And I told them I missed them. I hope they know that it's true.

This particular group of friends knew me B.A.
You know, Before Autism.
They actually saw Diva Girl change right along with me, in some ways. We were in a playgroup and when we started with the group, Diva Girl was a typical little toddler. Then suddenly, I came in week after week, worried about her. I remember watching her around the other kids and seeing how different she was, until it was just too hard to put myself in that position. So I stopped going. And really, the group did end up kind of breaking up our weekly meeting because all of us were busy and kept adding kids and schooling and activities to the mix. But I made no real effort to see any of them, though I counted them as friends.

Towards me, they were absolutely friends. They reached out to me. Brought food after the birth of Rascal and Vlad. Let me know when they thought of me. Donated to BCA, for the kids. Really, some of these ladies did much more than I deserved. And they weren't the only friends I left by the side of the Autism Road. Friends I had from my college days. Friends I had from my time in Memphis. My life was too hard and too busy to nurture friendships, and my focus was so much on myself and my family that I was probably horribly selfish when I did happen to pick up the phone.

When it hit me just how soon my friend will be moving and I expressed how completely sad the realization made me, she said "I know, why didn't we hang out more?!?" And my reply was "I guess we all just tend to take one another for granted, don't we?" Because that's the truth. For well over a year she has been just around the building from me. And I thought, plenty of times, about getting together more. About making an effort. But I didn't.

And I have regrets. She is one of the most genuine, hilariously wonderful people that I've ever had the pleasure of befriending. I should have walked over there more often. Just as I should have picked up the phone more and gotten together more with many other amazing women that I have befriended across the years. The interesting thing is that in the past few weeks I have felt a conviction to reach out to certain old friends, and I've been thrilled with the responses that I've gotten. This is just a confirmation of what I was already inching toward. It is time to make an effort again. It is time to be a friend and not take people for granted.

I know that we all have phases through life and it is natural to grow apart from people, especially when your paths seem to go in different directions. So I don't expect to fill my days with playdates and nights out with every person I've ever had good times with. That's not realistic. But I will drop the ones I miss a note or a call or an invitation. And I will make an extra effort with the friends who have stood by me through everything and really assess what I've been "giving back" lately.

So thank you, my friends. Thank you to the friends who I haven't seen in years but I know still care. Thank you to the friends who have been on my speed dial and supported me through every evaluation and doctors appointment. Thank you to the friends who get my TNU jokes. Thank you to the friends who get my IEP jokes. Thank you to all who have let me be a part of your life, whether big or small, and for wanting to be a part of mine. You are worth an effort.

To Weird and Wacky Friendship!