I just jumped on the B12 bandwagon. For a while I've thought about getting into Methyl B-12 shots, but I've never made it all the way there. Even though I dabble in the world of biomedical treatments, I've not yet visited a DAN!* doctor. I say yet because I've broken down and finally fought for a referral from Little Bird's pediatrician to see one in the area. Thanks to JC, Little Bird's pediatrician- my favorite one in town (she reads this blog sometimes). I've resisted the DAN! protocol and what I've assumed was voodoo. But now, I think I need a little voodoo. We're (she's) stuck and need some kind of push, some kind of change. Nothing changes of nothing changes.
Thanks to Brooke, another ASD mommy, who passed along the link to get these B12 lollipops. Hope the bird likes them!
*DAN! is Defeat Autism Now!
I celebrated a birthday a few days ago. Well, maybe celebrated isn't the right word. I'm older now. Wiser. More sophisticated. Actually, I'm just faking it. I don't like birthdays. Too much opportunity to reflect, contemplate. That's the last thing I want to do. The past few years have been pretty rough. The last great birthday I had was 27. I'm not telling how many years ago that was. Ok, it was five. Maybe that's why I changed my facebook profile to say I was born in 1982. I was not. But, 27 was a pretty awesome year. I have pictures from that year and I can see the exact moment it changed. But, I digress. This post is about an amazing friend I have. There's a reason that some friends are lifers. It's because they know you. The real you. I opened up a birthday card and out fell a piece of paper with the aforementioned lyrics on them. My heart leapt. Then I read the card...
"I wish you the happiest birthday that you can have. I say it that way because I know that you're in a place where even the happiest events are shaded with grey. Remember, any time it gets to be too much, you can call me and I'll remind you of who you are."
There was more, but I was in tears by the time I got to the end of the card. This was the best, most honest birthday message I received- and I received a lot. Both Greg and Lisa said they couldn't believe all the FB greetings I was getting all day, suggesting that I have so many friends and so many people in my life that like me. That's cool, but I know that it's the quality that counts. A good friend is hard to find. A real friend. The kind who gets you. The kind who knows the real you and will remind you "any time."
"Am I making something worthwhile out of this place?
Am I making something worthwhile out of this chase?
I am displaced.
I am displaced."
I just read this article this morning and I was moved to write. There's kind of a new movement I've seen among the Autism Spectrum Disorder community lately and its all about acceptance. I read in a book once that "acceptance is the answer to all my problems today." If you know this quote, then you're probably smiling right now. Moms of kids with ASD all over the place are becoming more and more comfortable with where their kids are today and accepting them as is, rather than trying to change them. Hmmm, maybe "change them" isn't the right terminology because I'm not trying to change my kid, but I really am. Wait, does that make sense? See, I'm trying to give her the best possible outcome. I'm spending vacations, new wardrobes, etc on her therapies, private schools, doctors, etc. in effort to help her reach her utmost potential. She's not there yet (right?!). We have a shitload of work to do and I'm afraid there's not a lot of time left. I'm working hard to get this kid to talk, interact, socialize, get to know her body in space, feel things, understand things, and finally to be a productive and functional member of society. I'm not done. I'm still going to spend my money, time, sweat, and tears on this journey.
I've got the will, strength, and courage. But acceptance? Nope. I'm not there yet.
Ok, I may be a talker, but I also listen. Then I think about what I've heard. Sometimes too much. Last night some friends were teasing me because I'm constantly on my cell phone, which is basically a computer complete with constant internet access. A few months ago, greg put a "push" program on my phone that literally pushes emails through to my phone. So, every time that someone emails me my phone beeps or buzzes. And of course, every time it beeps or buzzes, I absolutely must check it. Whether it's a letter, a bill, or a notification that something's ready for me at the library, I feel compelled to get it right away. Funny, since I never answer my phone. I really never answer my house phone (what's worse is that I rarely listen to the messages there either) and my cell phone gets answered 40% of the time. I guess I'd rather read than talk!
The deal is, the phone, the emails, the news and blogs I'm always reading are distractions. And frankly, thank god for them. Lately, I need to be distracted. A lot. A weaker girl would fall apart in my shoes. When things are going well, I don't necessarily jump toward the distraction. But today, I need it. So go ahead, distract me.
The ten day period between Rosh Hashanah and Yom Kippur is meant to be a period of introspection. We reflect on our behaviors of the past year and consider where and whom we've wronged. There's a tradition known as tashlich where we are meant to cast away our sins. This is often practiced by tossing something into a body of water.
This afternoon, Little Bird and I visited the Cider Mill and brought with us a couple pieces of bread. We tossed them into the river and fed the ducks. I think those ducks got full quickly on all my sins of the past year!!
Oh where, oh where has my little girl gone? As I type this she is lying on the floor and banging her fists. Her play tutor is so much more patient than I am at this moment. In all fairness, this is not nearly as dramatic as it could be or as other families have experienced, but my stuff is my stuff. So... Little Bird seems to have lost her voice. At least, she's not using it very much. Rather, there seems to be a high-pitched squeal coming from her vocal chords instead. When I picked her up from school today she was yawning. Her teachers said she was very quiet and just not herself. Interesting. Sure enough, in the parking lot we ran into a friend and she didn't answer her question, hardly looked at her. We got home and the whining increased to a level certain to drive every dog in the neighborhood to suicide. She refused to eat much of her lunch and instead begged for bagels and a donut. That's when it hit me: MAJOR gluten infractions this weekend. I let her eat some of a donut from the cider mill on Saturday. Yesterday she ate half of a slice of bread- real, gluten-y bread!!
I'm still very skeptical about the GF/CF diet even though she's been on it for more than 11 months. It's times like this that I really start to buy in to all of it. Because she really is different today than she was two days ago. Of course, she could just be tired or coming down with something. That's the thing with all this: I never freaking know. Seriously, I know nothing. It's all a guessing game. Why is she making progress? Is it the diet? countless hours of therapy? the chiropractic care? the new school? the new listening therapy CD? just good old fashioned time? No one knows. But, I've still gotta keep doing it ALL. And I will.
In the meantime, I've gotta scrape my kid up off the floor and try to make the whining and crying stop. I see the play tutor trying to work with her and I am so jealous that she gets to leave here.
My family and I just signed up to join AIDS Walk Ann Arbor 09 and we think you should come with us. It's (sadly) a very small event. I think they're hoping for 500 walkers. Quite a difference from the 4000+ we had last week at the Walk4Friendship. I'm thinking this will be a nice walk around downtown Ann Arbor while raising awareness about HIV/AIDS and the needs in that community. Here's some more information: AIDS WALK. Here's where you can sign up to join us: REGISTER. Our team name is Red Ribbons. Cute, right?! This event is FREE and I'm not looking to raise funds here, just awareness.
Oh, one more thing.... this walk is on my birthday (yes, I'm turning 25 again!), so if you wanna spend my birthday with me, you know what to do. C'mon, who doesn't want to spend a Sunday afternoon walking around AA?!
Someone recently told me that I'm a talker, meaning that I talk about my "stuff." I told him that my mind is a dangerous neighborhood and it's unsafe for me to travel through alone. Truth is, there's safety in numbers and no one likes to go through things alone. I don't feel shame for my issues- they are what they are. There's always someone who has gone through the same thing- or worse- who can share with me the light on the other side.
Today I randomly met a woman with an 18 year old son with Autism. I told her I love hearing from women with older kids who have been where I am now. She said, "call me anytime. It gets better. I promise." Man, I really needed to hear that today. See, I wouldn't have gotten to carry that around with me for the rest of the day if I wasn't such a "talker".