Sunday, October 7, 2012
I hesitate to even say it. Writing about it seems a little less risky. Maybe I could whisper it... maybe you could just come by and see it. Progress. Whoa.... did I really just put that on the page? Yep. Progress.
Avery is six and a half years old. So it's been five years. Five years since the developmental clock stopped for her. She was about 18 months old when she started moving backwards. Losing words, signs, gestures, muscle tone, eye contact, and understanding. Five years. It seems like yesterday. But I digress.
In my last blog entry I shared with you of Avery's most current diagnosis. Epilepsy. A rattled brain to accompany our list of growing diagnoses. Not that I was surprised. I was, as I mentioned, even a bit relieved. To finally have something that is treatable.
For three short weeks she has been taking a medication to try to control the almost constant seizure activity that was wrecking havoc on her temporal lobe. The medication has a long list of side effects, as do the dozens of nutritional supplements and pharmaceutical drugs that Avery already gets in a hefty daily dose. For the first week, she was a bit "zombie" like (for lack of a better description.) Her teachers and therapists watched as she muddled through the day, drooling and half asleep. The neurologist told us, as they often do, to wait. Wait. Give her some time to adjust before we jump to another new medication. I almost didn't listen. She was even further "away" from us than usual, and I couldn't imagine being that physically exhausted all of the time. However, I held my breath and relented to give her another week. I'm glad I did.
Fast forward a few weeks and everyone who knows Avery has noticed a change. And this time, it is a positive one. Simple things like, when I say, "put your cup on the table" (instead of the usual throwing it on the floor) and she DOES it. Better eye contact, better simple imitation, more laughter, more vocalizations, and (dare I say it) better SLEEP.
If someone walked in to my life and saw how we manage our house and schedule, I am quite certain they would run away screaming. Autism-proofing our home and lifestyle is an adjustment to say the least. Just yesterday, Avery was able to reach a shelf we had screwed into the wall in her playroom that held the DVR and DVD players. The TV is already mounted to the wall, cords wired behind the drywall. She pulled the whole shelf down and was biting/mouthing the wires that came down with the equipment. Thankfully, she was fine. Thankfully, we have a handyman friend who came right over to save the day. Until she gets a little taller that is. We have five professionally installed baby gates in our house. We have video cameras to watch Avery. We just replaced blinds with shutters to keep her from strangling herself with the strings as she couldn't resist constantly meddling with them. I've glued/taped down picture frames, decorations, and rearranged locks and added toplocks to our doors. We even had a electric gate installed across our driveway to prevent her from somehow escaping out in to the alley way. We are constantly on our toes. Constantly having to re-think how to manage. It can be exhausting. All the while watching our precious daughter grow taller and taller, but stay on a developmental level of an infant. We have fears and worries that no parent should have to encounter. That most everyone is completely oblivious too. Autism, oral apraxia, motor apraxia, mastocytosis and epliepsy have left our sweet, happy, adorable girl, still without words, without simple understanding, and without so many abilities that we all take for granted.
So it is with extreme caution that I use the word progress. But let me share one more example. Today I was taking Avery to sit on the potty, which we do every hour or so even though she is not potty trained. She's about 50/50 as to whether she will actually go or not, but we are trying to give her the opportunity. Anyway, she was looking right at me, smiling and laughing. I was waiting her out, persistently sitting her back down because I knew she had to go. Since we were sitting there, I decided to play a silly peek-a-boo game with her, but instead of saying "boo" as I appeared from behind my hands, I would say "mama" (emphatically and with lots of excitement.) She was actually giggling at me. RESPONDING! She even reached for me and made some sort of "m" sound approximation! It. Was. Glorious. Downright spectacular.
It isn't often, or even ever, that I go to bed at night smiling, and thinking, "this was a really good day." Most of the time I am too overwhelmed, stressed with life, schoolwork, three kids' schedules, one that includes 30+ hours of therapy a week in addition to her school. But tonight, no MATTER what the rest of this day holds, I will relax, smile and lock in my memory bank the moments I got to share with my three blessings today.
I love being a mom. I am so lucky to get to have this role. Sometimes the journey is hard, and it's too chaotic to see the beauty in the day to day. But today was beautiful. Progress or not, its so nice to see Avery's eyes. And to know that they see me.