In the dark days of Elizabeth’s identification, when I was searching the internet and Googling, Googling, Googling; when I was scaring myself with what her future might look like- I remember coming across some interesting characteristics- Aspects of myself. Aspects of my husband. Aspects of my family.
In the dark days of Elizabeth’s identification, when I was looking for a reason for… this whateveritiscalledcuz’autismdoesn’t soundquiterightanddoesn’tcaptureitall; when I was Googling, Googling, Googling, and scaring myself with the dangers of the world around me, I remember realizing some interesting things about genetics. About myself. About my husband. About my family.
One day, when I was heaping guilt upon myself- was it the immunizations? The tuna I ate? The water I drank? The food I warmed up in plastic containers? The yogurt I didn’t drink that didn’t build up the right bacteria in her gut?- my mother, in her very gentle way, placed her hand on my shoulder, and said, very lovingly- “Honey, she didn’t stand a chance. Between you and James and your families… this is what happens. You now get to deal with it.”
I didn’t fully believe her until we had Ray… and Ray’s issues. Now, I look at sweet, cooing, cuddly babies who go to sleep when they’re supposed to, and who cry for short periods of time and who can play games with you, and I marvel. The running joke in our family is that I loved being pregnant- loved it. I was one of those Madonna figures- glowing, full of health and aware of the miracle unfolding inside of me. (What did you do today, dear? Oh, I grew a pair of ears today. How about you?) I would probably have been a perfect surrogate mother- pregnancy and even birth were relatively uneventful things- as uneventful as a miracle can be. But the babies.. oh, the babies.
James and I do not make happy babies together. He and I made two very unhappy, fussy, sensitive babies who slept in short bursts only to wake up unhappy. Ray would not allow me to put him down, while Elizabeth- very content with being put down on her back- would have hysterics if she were put down on her stomach. It was a constant guessing game for their first three years- and one that we still play for chunks of time- are they cold? Tired? Hungry? Has a cloud moved across the sun? Did someone move too fast? Change in transition? Is the dryer/vacuum cleaner/ radio on? Pearl Jam is good/ Phish is bad?
Conversely, we also made two intensely curious children. Even without the language to ask “why”, they have always wanted to know “why”. I was explaining to Elizabeth at 10 months old that the bubbles she was so afraid of were created by soap lying on top of water- and she could calm down. I would explain the concept of volume and the Doppler effect to my 3-year old son who was freaking out about the change in song, and he would calm down. We explain about social interactions being a formula- not with numbers but with words (the answer to “How are you?” + a small smile – real eye contact = is “Good, how are you”, and not how you really feel)- and they understand how math relates to behavior. We talk about analyzing what others are saying and how the teenagers might not like to hear a 7-year old call them “obstreperous” and to keep that word for other contexts- and they get it. The intense “why” is as hard-wired as the fear and the emotional dysregulation.
And I can’t blame James- for this is what my mother dealt with when I was a baby. I had heard stories, but it wasn’t until it was the fourth month in a row of no sleep, and colicky babies for two years in a row… that I understood. When I was a baby, I rarely slept; I cried hysterically; I hated having my hair brushed. When I was a child, I read obsessively, pulled out the tags from my clothes, and cried frequently. I’m an only child… and I think I can guess why.
According to James’ mother, he was a perfect child (of course he was!). But I see pictures of a quiet, withdrawn little boy who was very, very thin, rarely ate, and rarely had expression on his face.
I look at our two families, with their laundry lists of labels… and I realize… my children didn’t stand a chance.
This was all triggered today, when Diary of a Mom had a beautifully-written, hysterical, touching post– and it drove me crazy, because there are only 11 items on the list. That lack of symmetry is something I immediately noticed. I love her post- but I could never have never written it because I would have stopped at 10- or kept on going to 12.
I recognize that my daughter’s tantrums when things are out of order… comes naturally.
I recognize that my daughter’s lining things up according to her own pattern… comes naturally.
I recognize that my son’s intense hatred of getting his picture taken… comes naturally (When I’m prepared, I’m a bit of a ham, but I hate the surprise element- and there is that same brooding look in my husband’s childhood photos).
I recognize that my son’s intense relationship with music… comes naturally.
I realize that my children’s desperate need to know what comes next and to plan for it… comes naturally.
I’m not saying that my husband and I have autism. We’re both bright people… with quirks. Quirks that might have needed attention 40-45 years ago, but by the grace of God, a couple of amazing mothers, and the right contexts, became… manageable. Quirks that we’ve learned to work with; to work around; to ignore. Quirks that got strengthened when our genetic material got combined. Quirks that got focused. Some quirks that are just… us, and some quirks that became a problem.
Quirks, that when combined with language problems and blood chemistry issues and triggered by whatever is in our modern world, became autism and Tourette’s and giftedness and twice-exceptionality and all of those wonderful labels that define what services and doctors our children see, but do not quite define them. Genetics plus environmental triggers- pretty much explains most of human development. The apples do not fall far from the trees, but they do form their own shapes.
I asked her, and Elizabeth can’t make a list of 11 things either….