Have
you ever tried to understand how someone else’s brain works? I mean really,
truly understand how it works. It’s not an easy thing to do, but it’s an
important part of parenting. We’ve spent many years trying to figure out how
Clara Beth thinks because it helps us know how to help her. Fortunately, her
brain is nearly identical to mine, so I can almost always figure out what she’s
thinking, how she’s feeling, and how to help her work through those feelings.
Jude,
however, is an entirely different story. He is not at all like me. He is much
more similar to Chris, and I don’t understand Chris’s brain. But to make things
even trickier, he is on the autism spectrum, and even autism experts don’t
understand how autism works. And to top that off, his is not a classic case of
autism. The national autism expert who diagnosed him admits that Jude is a
mystery even to him. So there’s not much chance that I will truly understand
his fascinating, brilliant, complicated little mind, but since I’m his mom, I’m
going to give it my best try.
Many
years ago, before I had children, I read a book called The Curious Incident of
the Dog in the Night-Time. It’s a fictional book, written by a man who does not have
autism, but from the perspective of a teenage boy with Asperger’s. It’s
fascinating. I haven’t read it for many years, and I am not endorsing it as an
accurate portrayal of ASD, but my friend Shannon reminded me of a particular passage
that describes my son well. It does not necessarily describe all individuals on the
spectrum. There is a saying that goes “If you’ve met one person with autism,
then you’ve met one person with autism.” The spectrum is a big place, and no
two individuals on the spectrum are the same, but this quote from the book has
been helpful for understanding my little Judle Bug:
“Most people are lazy. They never look at everything. They
do what is called glancing…
And the information in their head is really simple. For example, if they are in
the countryside, it might be:
- I
am standing in a field that is full of grass.
- There
are some cows in the fields.
- It
is sunny with a few clouds.
- There
are some flowers in the grass.
- There
is a village in the distance.
- There
is a fence at the edge of the field and it has a gate in it.
And then they would stop noticing anything because they would be thinking
something else like, “Oh, it is very beautiful here,” or “I’m worried that I
might have left the gas cooker on,” or “I wonder if Julie has given birth yet.”…
But if I am standing in a field in the countryside I notice everything. For
example, I remember standing in a field on Thursday, 15 June 1994…and I went
into a field with cows in it and I stopped and looked at the field and I
noticed these things:
- There
are 19 cows in the field, 15 of which are black and white and 4 of which
are brown and white.
- There
is a village in the distance which has 31 visible houses and a church with
a square tower and not a spire.
- There
are ridges in the field, which means that in medieval times it was what is
called a ridge and furrow field
and people who lived in the village would have a ridge each to do farming
on.
- There
is an old plastic bag from Asda in the hedge, and a squashed Coca-Cola can
with a snail on it, and a long piece of orange string.
- The
northeast corner of the field is highest and the southwest corner is lowest
and the field is folded downward slightly along the line between these two
corners so that the northwest and southeast corners are slightly lower
than they would be if the field was a flat inclined plane.
- I
can see three different types of grass and two colors of flowers in the
grass.
- The cows are mostly facing uphill.
And there were 31 more things in this list of things I noticed but Siobhan said
I didn’t need to write them all down. And it means that it is very tiring if I
am in a new place because I see all these things, and if someone asked me
afterward what the cows looked like, I could ask which one, and I could do a drawing
of them at home and say that a particular cow had particular patterns on it…
And when I am in a new place, because I see everything, it is like when a
computer is doing too many things at the same time and the central processor
unit is blocked up and there isn’t any space left to think about other things.
And when I am in a new place and there are lots of people there it is even
harder because people are not like cows and flowers and grass and they can talk
to you and do things that you don’t expect, so you have to notice everything
that is in the place, and also you have to notice things that might happen as
well. And sometimes when I am in a new place and there are lots of people there
it is like a computer crashing and I have to close my eyes and put my hands
over my ears and groan, which is like pressing CTRL + ALT + DEL and
shutting down programs and turning the computer off and rebooting so that I can
remember what I am doing and where I am meant to be going…”
I
think that describes Jude’s brain quite well. The boy is amazingly observant.
We hung new pictures in the play room a few months ago – large, canvas prints.
My 6 year old could have gone days without noticing them. Jude, however, saw
them the instant he walked down the stairs. He stopped and just stared at them
for several minutes. Then he started to describe them to us: “I see Mommy, and
Daddy, and Clara, and Baby Micah. I see Mommy’s feet. I see Daddy’s feet. Baby
Micah has a white shirt. Jude has a white shirt, too. Mommy has a pink shirt.
Daddy has a blue shirt. Clara has a pink head band….” On and on and on, until
he had pointed out every detail of both pictures. He didn’t move, he didn’t
take his eyes off the pictures, he couldn’t enter the play room and begin
playing until his busy little brain had processed every detail of this new
sight. But once he had processed it all, he could happily play in the play
room, and he hasn’t commented on the pictures ever since.
We
traveled to my parents’ house for Thanksgiving this year. It was a sensory
disaster for Jude. He had been doing so well up until that point that we had
nearly forgotten he was on the spectrum. But he had not traveled or slept away
from home for nearly a year, before his diagnosis, and we took for granted how
difficult a new place would be for him. There were new people and so many new
things for him to process. Chris would lie down with him at bed time, and Jude
would point out everything he saw in the room: “Daddy, I see a wall. I see
another wall. I see a lamp. I see a ceiling. There’s a square on the ceiling.
There’s another square. There’s another square. There’s another square. I see a
picture. It’s a picture of a flower. The flower is yellow. I see a bed. I see a
blanket….” Poor little guy could not shut his brain off and go to sleep. And
that was just the bedroom. My parents’ house is 5000 square feet full of new
input. It was more than he could handle, and he began to melt down. We saw him
revert to behaviors he hadn’t used in months...behaviors that were the equivalent of pressing CTRL+ALT+DEL on a keyboard...behaviors meant to shut out the world around him so his over-stimulated little brain could take a much-needed rest.
It
took him 3 solid weeks to recover from that trip- 3 weeks full of intensive
therapy, home visits from his therapists, very structured play time every
minute of the day….exhausting, sad, and scary. Fortunately, he did recover, and
we learned some valuable lessons about how to help him cope with new
surroundings and new people. And thankfully, he did great on our trip to Chris’s
parents’ house for Christmas. We learned how to help him process his new
surroundings, and he learned how to cope with the challenges of a new place. We saw very few spectrum-like behaviors on this trip. We've been home for a week now and he is returning to his normal routine fairly seamlessly. No intensive therapy needed for re-entry this time around. I
don’t think we would have been nearly as successful with this most recent trip
if we hadn’t taken the time to figure out what was going on in his brain, why
he was melting down in new surroundings, and how to help him work through it.
And hopefully we will continue to learn as the years go by, with the goal of
him eventually being able to confidently enter a room full of new people and
not only function through the challenge of it, but to thrive. That’s our goal,
and we feel encouraged and hopeful that he can do it!
But
it all begins now, one step at a time, one small challenge at a time. And the
better we understand him, the better equipped we are to help him. So it goes
with all parents, which is why I’m such a believer in taking the time to understand
our children’s brains, even when they seem to make no sense. ESPECIALLY when
they seem to make no sense.
