When allowed to wake up on her own schedule, Emma springs to consciousness like a rainbow. She is sweet and warm, cuddly with her arms around my neck like a baby koala bear. Her breathy-voice smiles as she talks about daddy going potty, mommy going potty, doggy going potty. She is calm and spirited at the same time, these types of mornings.
Today Bob got up first and took her out of bed while I laid under the blankets. I didn’t go back to sleep, I like to lounge in bed. That is. Until some of the repetitive thoughts come tossing through. This morning I couldn’t stop thinking about a recent phone conversation. A dear friend of mine called me the other night in true terror, “Daleth – I just HAD to call you, Have you ever given Emma an immunization?!? I just heard all of these horrible things about them, they CAUSE autism!!!”. She is childless and sweet and sometimes naive, and I tried to breathe through a 10-minute vocal exercise about what I think is going on with all this vaccination stuff. (If you disagree with me on this, please just keep your comments to yourself this time, I beg you please.)
When I hung up I felt the weight of the world on my back, and I knew she would never be convinced that I had not GIVEN my daughter autism.
I have to let it go, I know, but the little parts of information that I have, and the arguments I have found within myself keep cycling around and around. I wish I could make her understand what I feel and have found, and through that, I wish I could make the world understand what I feel and have found.
It seems like there are so many witchhunts in our society. I guess it’s just something to keep me humble; to remind me to be wary of my own preconceptions I might have towards other people and their life’s challenges.
Today was okay. I took Emma to school in her snowsuit again, it was a peaceful transaction (as far as clothing is concerned). I picked her up fully dressed… Those daycare workers are not being paid enough money, really.
The ride home was somewhat deafening, as usual. I wonder what the statistics are of early-onset of deafness in parents of special-needs children. (Probably abnormally high) There is little communication about what she needs, or dropped, or wants, or sees, or feels. It’s just an ear splitting howling scream that can easily turn into animalistic wailing at 190 db if not addressed properly. I try to be a good driver, but I also try to preserve the health of my auditory system. I’m driving down the highway a bit frantic, one hand on the steering wheel as I quickly cycle through the usual suspects, “Do you need your Juice? (hand juice back) Do you want your dolly? (rummage for doll, throw on her lap) Did your baby drop? (blindly flail around for baby) Do you want a book? (where are those dang books? flail around under pile of toys for books) Are you hungry? (try to open fruit roll-up with teeth while driving) Do you want your socks off? (peel off socks and shoes) Do you want your blanket? (throw blanket over backwards on her head) Did you drop a fruit snack? (sigh and hold finger over right hand ear hole to help with noise) (repeat as needed).
Emma was happy to be home early today. She also decided that there was no napping today. That’s too bad, because I was very tired. She was up several times last night, one session lasting nearly an hour. Anyway, we did some art, and she helped do some laundry. She watched Dora. I daydreamed of napping. On a good note, she’s been a little more talkative the last few evenings. Last night she said to Rylei as he walked through the room, “Where you going Rylei?” in her little voice. THAT was big news, she’s never said or interacted like that before. She’s also starting to get very excited when Daddy comes home, which is so cute. I think it makes Bob’s day to come through the door and hear “Daddy home!!! Daddy home!!!”. She is still abnormally attached to me in the house, but, I think this is a small step towards some future independance.
I made sure I brought the snowsuit home. I’m wondering if she’ll be sitting at Thanksgiving dinner next week in it, big, fluffy, and purple. >grin<
I find myself facing a new paranoia… I fear the meltdown. Maybe some other day I’ll talk about the meltdown itself, but today I just want to share my success in avoiding one. I was getting ready this morning, wondering if there is a special way I could wake Emma up that would ensure some semblance of humanity. I got everything ready, and crept into her room for the attack. My limbs felt a little bit rubbery and I found myself holding my breath… Is it possible to just slip jeans on her without waking her up? Can I change her diaper underneath the blankets? How about transporting her to Alamosa with her entire mattress and crib? I’ve tried to dress her in the clothes I need her to wear the night before… Who cares if the “strawberry-ba-ba” leaks pink stains all over, at least I know that it was freshly laundered the day before. BUT – NO. That won’t work, because Emma has a very very VERY VERY specific unmutable list of what is or is not going to be worn to bed. It consists of: FAIRY PRINCESS DRESSES, VERY SHORT SHORTS, SWIMSUITS, and the occasional Dora, Elmo, or Spongebob short-sleeved pajama TOP.
Anyway, as I was saying, THIS MORNING. I tried one of my 10 approaches, the “non-chalant mom is not even really here, so just go back to sleep” method. It worked for a diaper change, but definitely not pants. The legs were just beginning to wind up (kind of like a spinning chandelier) and her vocal cords were stretching when I decided that we weren’t going to wear pants. She could wear the damn spaghetti-strap summer dress to school and I’d bring some pants with her. But she’d need her coat. (NOT). Coats are obviously OUT OF FASHION this week with autistic children, because you would have thought I was trying to smear her down with dog shit. I tried choices, sweaters, hands-on-forced-dressing, and such. No way-Jose. Finally I came running out of the bedroom with her full-body-snowsuit (it’s about 2 feet thick and bright purple). “Will you wear THIS, Emma?” Her eyes stopped glazing, and through hiccupped sobs-dying, she said “Yeah.” So the snowsuit went on, and she even let me take the dress off. Miracle-of-all-miracles.
The car ride was a different story, but at least she was protected from frost-bite. I handed a pair of pants and a shirt to the daycare lady and gave her my fondest wishes of wellbeing.