A few weeks ago we sat down with the -ists at the school district to go over the results of all the evaluations they conducted on Bella. They basically confirmed everything we already suspected: Bella is, in fact, very high-functioning autistic. She is a year or so ahead in visual intelligence and memory, but a few years behind in social and communicative skills. She’ll begin her new preschool program in the fall, a small class (10-12 kids) dedicated to the needs and abilities of children with a wide range of developmental delays, including autism. The teacher is wonderful, and she’ll receive occupational, speech, and physical therapy several times a week during class. She’ll even get to swim once a week at the local elementary school. All of the -ists are absolutely great, adore Bella and sincerely believe she will flourish in this program. She will most likely start kindergarten a year late, but they anticipate she will be able to attend her local elementary school in a regular classroom without the help of an aide.
It’s all extremely great news, but it’s taken some time for me to fully process it. It’s one thing to sit down and talk to a room full of professionals about the things that worry and concern you with your daughter’s behavior while she charms the pants off of them. It’s another thing to receive a ten-page typed report detailing every single worrisome behavior you described and to read their professional analysis confirming that your daughter is, in their professional opinion, autistic. High-functioning, yes, possibly Asperger’s, yes, but at the end of the day, autistic is autistic.
When Bella was just different — spirited, high-needs, etc. — it felt temporary. In my mind, she wore her oversized personality the way a little girl wears her dad’s suit coat: too big and baggy for her right now, but over the years she would grow into it. She’d always wear the coat, but eventually she would grow into it — in fact, it would end up fitting so well that people would be drawn to the quirky girl with a funky sense of style.
But that’s not exactly the case. Bella’s not going to just outgrow this. She’ll always wear this coat. It might shrink a little bit, but it will basically stay the same size, no matter how tall and beautiful she becomes. She’ll learn to pin it back, to roll up the sleeves, but she’ll always have to deal with that big, floppy coat.
I know that she’s going to get the best help we can give her. I know the preschool program will be awesome for her, and the therapists are going to help her, and the outside therapy after school will help too. Maybe one day it will be an asset to her instead of a hindrance. But I’m selfish. I don’t want her to be hindered, or have to struggle, or feel awkward or scared or confused in situations that she shouldn’t have to feel that way. I don’t want her to be the odd kid in class that no one wants to talk to, that the mean girls mock to her face. Even more selfish, I don’t want our family to have to go through such an upheaval — daily routines, habits, and schedules will have to change to accommodate Bella’s needs, therapy sessions, school schedule, etc.
In a way, I feel like a small part of me is grieving. The future won’t be exactly how I imagined it would be for her. It’s weird to feel sad about that, though. It’s not like Bella is any different than she was before all of this — she’s has just as hard of a time staying out of the candy bowl in the cupboard today as she did six weeks ago. On top of that, according to every professional we’ve talked to so far, she’s extremely high-functioning, and may just need a bit of help to “catch up” with other kids her age. It’s just tough accepting that the odd behaviors you have grown accustomed to over your child’s entire lifetime aren’t going to go away on their own, and in fact mean something very different than you thought they did. I know she’ll be able to acquire the skills she needs to be successful in life, but she’s always going to have to work harder at things that come naturally to the rest of the world. It’s hard to accept that your baby will have to struggle all her life with something the rest of the world takes for granted.
But it’s fine. No one in this family is anywhere near normal, and Bella is no exception. Her brand of weird just happens to have a name attached to it. I can accept that much, at least. The rest will come in time.
At least Bella has an excuse now for her weirdness. I have no fucking clue about the other two.
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