The A-Word

The Bean completed her observation group on October 25th. We had a meeting with the pediatrician, the child psychologist, the speech therapist, the nursery nurse (who played with Eve during the observation period) and a young lady from Bean’s nursery school. We perched on child-sized chairs and drank instant coffee while they explained their observational findings and the results of various assessments they’d undertaken.

“You do go and singing a song, and I dance the ballet, Mommy.”

What we have with Bean is a very friendly, happy, energetic child who is good with puzzles and numbers. She has excellent eyesight– fighter pilot eyesight, practically– and a terrific memory. But she speaks and socializes like a child of two, not one who’s nearly four.

She can tell you her name, but is fuzzy on the idea of whether she is a boy or a girl. She can tell you what she wants, and describe in a limited way things that are happening right now, but if you ask, “Did you play at nursery today?” she blinks at you, or asks for juice. She’s only just starting to play in an imaginative way with her toys, rather than lining them up and flapping her hands at them.

"I want the sunglasses. The cool sunglasses."

Most of her speech is learned, memorized phrases, which she can deploy properly within a given context– an excellent coping strategy, but it’s not what you can call conversation. Her spontaneous utterances sound like complete gibberish, or else like something spat out by Google Translate. Instead of saying, “The man is wearing a hat,” for instance, Bean says, “The man is hatting.” Or “She is upping,” rather than “She is climbing up.”

If you think of all the ways people communicate and gather meaning from their surroundings– sensory input, visual cues, body language, and so on– as roads that go in and out from a person, Eve’s visual “road” is an ultramodern superhighway, five lanes in either direction. Her speech “road” is a narrow overgrown lane, indifferently paved, and the body language “road” isn’t in much better repair.

Clearly, she needs extra help. And the three areas she needs help in– speech, socialization, and imaginative play– are known in child development circles as the autism triad of impairments. It was agreed at the meeting, by us and all the professionals involved, that Eve is an autistic child. She is, thankfully, a very high-functioning, easy-going, coachable autistic child who has already made big improvements with early intervention. Odds are good that she will emerge into adulthood as a young person capable of contributing to society and living independently of us and the state.

The first few years of school, however, could be rocky. There are queues and rules and grades. There are cliques and games you don’t get picked for and bullying. There are standardized tests and league tables. There are teachers who talk and talk and talk.

Fortunately, in Britain, the medical system tends to be in contact with the school system. A major goal of the process Eve has been going through is to determine how she learns best, in order to alert the teachers to what’s coming their way. We will be able to get Eve “statemented”– that is, registered as a child who needs special education support. This gives her access to further speech therapy and other assistance. In fact, her current nursery school has already brought in a specialist to start working one-on-one with her there.

Early intervention is important, as she is due to start school next September. We actually went and toured one today, a friendly warren of colorful rooms with prints by old masters on the walls tucked behind the local country park. It has a vegetable garden and fishtanks and French lessons starting at age 9. Its Ofsted reports are excellent, and my friends K and J spoke approvingly of it. Most tellingly, the children we saw were relaxed and happy. The teachers, too.

I think Bean would thrive there, but I want her to be able to listen and learn, and tell people what she knows and what she’s thinking about. I would like her to be able to tell me that, too. I long for it. I am struggling to accept that it will be a longer, harder road to that point than I was expecting. However, it isn’t really about what I want. It’s about what she needs from us. Label or no label, she’s still Bean.

 

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5 comments

  1. She will enter the ranks of many brilliant “autism spectrum” people – Bill Gates being the first one that comes to mind. I’ve had a number of students who fell on the spectrum and I must say, they were some of the greatest kids I’ve met in my career. And the thing in common they all had – wonderful parents! She’s lucky to have you guys.
    Maria

  2. My son Dominic is newly Dx’ed as autistic. We found out on October 4th. I started this blog soon after and have been seeking support ever since. There is much hope. You just have to look for it. I have found much relief in his diagnosis because before that, I didn’t know what was going on. Now we know and we have begun to take action. I wish you love and light on your journey. Warmly, Amanda

  3. I wouldn’t even be able to begin to impart the encouragement or wisdom that Maria and Amanda have shared with you . You have a dynamo on your hands, just not the “standard” model. Innovation has always come from something outside the “standard model” You have a wonderful opportunity to pave the way for incredible learning for Eve, yourselves and many other.s
    Finding the right chanfor that increedible energy will yeild incredible joy and results1.
    Lot’s of Love to you all –Pops

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