Life is Hooootisss!: OMG!!! So THAT'S what sugar is!

Post-cupcake sugar HIGH! Yowwwwwwwwwwwwwwwwwwwwza!

Crazy week. Started with Saf coming down with a fever Sunday night that held strong all the way to Wednesday. So, we didn't do any services until Thurday when Nixi had speech and OT.

Unfortunately, as I mentioned before, when Saf is on the heels of being sick her symptoms are exacerbated. Indeed, this was, and is the case as I sit here typing. She had a rough time getting through Nixi's Thursday appointment. Friday was her day for speech and OT at school, and it was rough. Had a hard time getting her in the mode to go, but she did. It went alright for awhile but we had a major crash and burn at the end, complete with head banging and the sort. The meltdown continued once we got home, stopping only when I brought out the video camera and taped her. Then I showed her and talked to her about what she was seeing.."Saf is mad", then "Saf is sad." She broke down into a weeping ball in my lap and watched the videos again and again until she was able to transition to her nap routine.

See, everyone talks about Classic Autism as a neurobiological disorder, a disorder of communication, a developmental disorder, blah, blah, blah. The thing most people don't seem to talk about is how very mean and sadistic this disorder is. In Saf's case, it took a darling, loving, happy go lucky kid and just chipped away at her until she cracked. Its this shapeless, faceless phantom that follows her and continues to chip away at her and it doesn't stop even when it literally brings her to her little knees. It has robbed her of her self confidence, her light heartedness, her peace, and her absolute right to be a kid. It pounds on her, making her anxious about nearly everything...even her own home, and sometimes, us. We are in a daily, minute to minute battle to keep her with us. How much can a kid take before they completely turn in on themselves and tune out the world? That's a question that we don't know the answer to...and it scares us to the core. There are a number of things that she could do comfortably a year ago that she could never tolerate today. When does this stop? What will this all look like a year from now? Its the fight we'll never stop fighting because we can't, as tired and drained as we may often be. Saf is NOT in this alone, and we will NEVER let her feel as though she is. If you think I'm being dramatic, try staying at our house for a week and see if you don't leave in tears, confusion, and disbelief.

This is not to say we don't have wonderful times. We do. We treasure every moment of joy and try to find humor in moments that are less than joyful. Given all that Saf is up against, she still manages to find moments of pure bliss in just about every day. I just think that you have to acknowledge the horror of this disorder to keep your sanity within it. Every cloud has a silver lining, but sometimes you just have to call a cloud a cloud.......and that's ok. Then, you have to pick yourself up off the floor and get on with it.

---Scraping self off floor-----

On to Nixi's birthday! As I mentioned, Saf was having a rough day on Friday. Nixi wasn't in the greatest space either. None the less, she managed to joyfully scarf down a mini cupcake (her first full sugar treat ever!) and enjoy playing with a new train toy that we bought her and Saf. I think the highlight for Nixi was all of the great playtime spent on the train with her sister. Nixi just adores Saf. Its just the greastest thing ever. So, all in all, the birthday ended great and Nixi thanks all of her family and friends for the birthday gifts and wishes!

We have a visit planned for this week from Nana Cummings and Omi Paul, very exciting. We'll also try to do a full week of services, as well as take Nixi for her 1 year doctor visit. She'll get shots...NO FUN! Should be an exciting week. Have a great one, and check back next week to see how everything went!

Sarah

Saf after we got home from school on Friday. What looks like she's shaking her head back and forth is actually her banging her head into the window...it got more forceful so I obviously ended taping and intervened.