As the saying goes….no two individuals with Autism are the
same, have the same challenges or strengths or have the same developmental
path. The more people I meet with
Autism, the more I find I don’t know or can’t know until I get to know them
more closely, how it affects their lives.
Even with Ben, I learn new things about his Autism every day. It seems to come out in new and different
ways now than it did 8 months ago or a year ago. I wonder often what it will look like in a
year, 5, 10, 20, 30+ years. I can
worry. I can also hold hope close to my
heart. I can work as hard as I can to
help my son overcome the challenges and build up the strengths.
Here is a typical day for Ben and I on a weekend. First, we can talk about sleep. Autism and sleep have an ongoing war. Ben either sleeps like a baby for extended
periods of time (rarely but it happens) or he is up late taking 1-3 hours to
get to sleep soundly. He can wake up in
the middle of the night for 1-3 hours straight at a time. He can wake up at 4, 5, 6am and be up for the
day waking me up with him. He has acute
hearing and if I roll over in my bed in the next room, sometimes he hears it
and wakes up and can’t get back to sleep.
It’s hard to even sleep restfully when I’m afraid to turn over or God
forbid I have to walk on the creaky floors to the bathroom, then I’m most
definitely toast and he’s up. Recently I
started to use Melatonin on really challenging nights to help him get to sleep
or stay asleep if he wakes up in the middle of the night (many nights I also
take a dose!). It’s definitely helping,
but I’m not a fan of using this often with him or myself. I’d rather not mess with nature unless
absolutely necessary. Once he’s up for the
day, he toddles into my room (yes, that part is still hard to get used to that
he’s not a baby anymore and can come into my room as soon as he jumps out of
his crib (and don’t worry, he’s in a porta crib until the toddler rails show up
to change his big crib over). He climbs
up on my bed and begins to hug me and say “Hi” over and over. If I don’t get up though, without fail, he
will start to hit/pinch/bite/head butt/pull my hair until I either get up or
hide under the covers to stay somewhat safe.
We then hit the kitchen for his bottle and/or breakfast. He has to watch a movie on the iPad in order
to be able to sit still long enough to eat for all meals. Some meals he feeds himself, many of them I
still feed him as his gross motor skills are still very rough and it takes a
long time for him to eat and he gets most of it on the floor instead of in his
belly. Then the day is up for
grabs. During the week he has therapy
after therapy, so I try my best to keep weekends casual and up to him as much
as possible. He needs extensive hours
outside each day in order to release a lot of his energy. We hit the parks for hours. The beaches.
The playgrounds. The pool. Anything that allows extensive movement in a
natural environment with few people.
Then it’s home for lunch at noon, nap at 1 and up from 3 or 4 until
dinner at 6pm and lights out starting at 8pm (but it’s anyone’s guess as to
when he will actually fall soundly asleep again). We have a pretty rigid routine. He loves it.
After our return back from Costa Rica, we jumped right back into our
routine a day later with sending him to school/therapy and I thought he would
not do well so soon. On the contrary, he
had a grin from ear to ear in the car seat as we drove me to work and him to school. His world is best when it’s the same. I challenge that with a lot of change/new
experiences. Some days it works, some
days not so much. Ben also has never
ending energy. Literally. He never stops moving. More so than a typical toddler. I often describe him as a pinball bouncing
around. He has trouble focusing for more
than a few minutes (if that) at a time. He
does best when he has a set task at hand to accomplish (obstacle course in OT,
game in Speech, task request in ABA therapy).
If there is no agenda, he flits around. But sometimes structure can be too much if
there are others also in the group.
Structure alone is his favorite.
Structure with other kids or even adults, is hard for him to bear. He’s in gymnastics class right now. He loves the Free Play time periods when
there are few kids and lots of open space.
He hates actual class with a lot of other kids to contend with or even
the free play because he gets overwhelmed with noise/crowds. He’s quite smart and I’ve seen him purposefully
not complete a task in therapy because he’s just downright bored with doing it
for the 20th time. He’s a lot
like our old Ridgeback, Gretta, who did what she was asked 1-2 times and then
gave a look like “why are you asking me to do it again when I already did it? No thanks.”
ABA forces compliance so that he can learn to focus for longer periods
of time. It helps him to learn how to
control his emotions/behaviors so that the meltdowns and aggressive behaviors
deescalate. It helps him to organize his
world. One day this will hopefully
transfer into being able to attend mainstream school.
Tonight I hung out with him and read a book (“There’s A Boy
In Here – Emerging from the bonds of autism”) while he completely destroyed my
hair making it into a rats nest. But
sometimes you have to let him do what he wants so you can do what you want for
a little while. Nothing a brush didn’t
fix shortly after we started to get ready for bed. Days are exhausting. Nights are too. I pick my battles these days so we can all
keep our sanity.
I’ll leave you with a series of pictures snapped in
succession within about 15 seconds. Ben
loved the new cleaned out fireplace and thought it best to try it out from
every angle. Oh he makes me smile. Love you bunches little man.
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