Tuesday, September 16, 2008

I'm out of private mode & I have a new name!

I did a little google account finagling (wow, spell check didn't correct that word for me...guess those spelling bees paid off!), and now I am no longer spewing my thoughts to the wee eyes of my nieces and nephews. I've had to change the title/url of my blog to make this change complete. You can now find me at: http://thisismynewnormal.blogspot.com

I am also happy to report that today, 17 days into the school year, we had our first, fuss-free, didn't-have-to-drag-him-in-by-the-wrist-or-carry-him-like-he-wasn't-45 lbs., nobody-stared-at-us, drop-off at school. I hope that by typing that I haven't totally jinxed us.

We have been treating yeast and bacteria in M's gut off and on for nearly six months. For those of you not familiar with the biology of kids on the autism spectrum, it is thought that most have what they refer to as autistic enterocolitis, or leaky gut. So while all of us have a variety of weird bacteria and yeast growing in our stomachs, it does so fairly harmoniously. But in kids with autism, the numbers get out of balance and leak out of perforations in the gut affecting their entire nervous systems. I'm probably not describing this totally correctly, but you get the gist. It's still a very controversial thought, but it does resonate with me as I know that pretty much every kid on the spectrum that I have heard of has some sort of tummy problem. And when we don't feel good inside, how can we show anything different on the outside? Anyhow, we did some pretty aggressive antibiotics and are now almost done with a 20-day course of an antifungal medicine. I was warned that M's hyperactivity and stimming would likely get worse before it got better. Boy, howdy, did they! But I am skeptically wondering if we have turned a corner. He's still chewing like mad, but he just seems a little calmer to me. He is also trying to string all of his words and phrases together, as though he is really, really trying to hold a conversation with me. When he does it, he holds his arms out like he is orating and gets a very serious look on his face, with his lips pursed just so. And he says things like, 'And so...anybody, another time, Playhouse Disney, one more time, read a story, sometimes...' And he has these great inflections like he is really trying to get you to think about what it is that he is saying. Because it is very important, and he is working really hard to say it to you. And I listen intently, nodding occasionally, and repeating some of it back to him in order to create some semblance of conversation. Bless his heart, it must be really frustrating to want to say what is on your mind, but to not be able to find the right words or even be able to form them. I am trying my very hardest to remember what this must feel like from his perspective. Sometimes it is hard to be selfless when you find you are also struggling. How can you help someone else if you can't even help yourself? I've heard that said over and over and until this past year hadn't realized how true it was.

Fall is right around the corner. You can feel it in the air, see it in the store windows. And of course with football season here, you know it's in reach. I always find myself sleepier this time of year. I recall days since I was probably around 12 years old where I could sleep and sleep and still be tired. Almost like a bear in hibernation. But this year; this Fall; I am finding that through the sleepiness I am trying to turn a corner for myself and for my family so that we can get through the cold months and find ourselves reborn and rejuvenated next Spring. I think that's about how much time we'll need to totally get ourselves on track. But it's happening...I can feel it. I just have to keep the forward momentum going.

I'll leave you with a photo of my two boys this past weekend enjoying a swim.


cassyjones said...

Yay Miles!!!!

little miss mel said...

congrats M!! Big news!!!

Wow, I didn't know about the tummy troubles.

Yes, hope you get through this fall/winter quite cleansed.

sarah said...

Great post, i truly love your blog. I am glad you had a good drop-off I think about you guys every morning at 8. Heres to another easy drop off, and many good days at school.
LOVE the new name I read it once and was like, ahhh yes this is my new normal, and a weight was lifted off my shoulder instantly.
lets get together very soon, like tomorrow am...