last night i watched Robert MacNeil's PBS series on Autism. He had wanted to do this report because his own grandson is on the Spectrum. i think it was an interesting watch. i like that there were more than two sides to the story, not just two people interviewed, but several. of course, any program i watch on Autism always leaves me wanting more. there are no "definitive" answers. i have my own ideas on the subject, as all parents of children with Autism do. ...
it got me to thinking of Emma as a baby. how she rolled over onto her belly at an early age. then, not again until she was about ten months old. it got me to thinking how she would "disappear" for five minutes at a time or go longer with no response, rocking and humming on all fours, looking... where? i don't even know if she heard me or saw me. how she was an INFANT in a deep sleep, unwakeable, screaming with her eyes wide open. that was the only time she was ever loud. Emma was so quiet my Mamaw Virginia was worried. "Babies aren't that good." The pediatric neurologist described her as having frequent "catatonic" states. and "autistic-like" characteristics. she was 14 mos. old then.
when she began to use language, it was ODD. she repeated everything in question form. doors were not "doors" but "rectangles." hearts were her first "obsession." she could pick a heart out anywhere, identifying it excitedly. circles were next, later. she horded them. anything circular she would snatch up and stack. triangles, a bit later. all triangles were skirts, so she would place triangular shapes in books to make the characters look like they were wearing skirts. then heads. tearing the heads off of Barbies or ripping out pages in magazines, tearing paper doll heads off, so she could place the heads on the characters in her books.
looking back, there is a lot i don't remember. i have much of it written down in various notebooks here and there. sometimes i think maybe it isn't even that important. BECAUSE look at her now. she is always going to have trouble with things, but she has come so far. so it IS important. there has been a process. i have learned so much. about the brain. about modulating senses. about love.
two nights ago Emma came up and gave me the biggest hug. it wasn't a rough hug like she is prone to give. it was NICE! and she said without prompting, "i love you, mommy." she usually turns her head when i try to kiss her. but SHE kissed me. it was genuine. and my heart was full.
the PBS series got me to thinking more realistically about Emma growing up. There was a grown son on it who ran marathons and did triathalons, cycled everywhere, but always with his father at his side. he was physically fit, and he LOOKED neurotypical, but even as an adult he couldn't recognize danger. he still needs supervision and guidance. i wonder about Emma. i got her a custom trike because she is too big for training wheels. she feels more free and relaxed on the trike, but i still can't get her to look straight ahead. she's always watching her feet push the pedals or the wheel going round and round, so there are frequent crashes still. fortunately she can't tip over now. :) practice practice practice we do. i hope she will be able to drive a car one day. i have high hopes. but a car and a road are dangerous, and she has no comprehension of true danger, where her body is in space, depth perception issues. this is something we work on everyday and also during the school year with her occupational therapist.
honestly, most of the time, i don't even think about Emma having Autism. it just IS. she just IS. and i love her immeasurably. and Noah too! it might surprise you to know that Noah is more difficult. he is 100% "neurotypical," but he is a challenge. daily. since he was three weeks old. with the crying and temper tantrums. he is my beautiful boy who thinks the world is against him and nothing goes his way. :( teaching him how to handle his emotions is the biggest challenge, how to handle change and disappointment. whew.
i LOVE my life. it is EVEN MORE than i hoped for. and i mean that. i struggle with things. especially recently. but i am HAPPY. :)
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