Last Thursday my husband and I made the journey to take Beans to see his developmental pediatrician. To be fair, it's only about a 40 minute drive from our home, but getting Beans there is a journey in, and of itself.
First, I have to actually obtain an appointment
with the the doctor. She is one of the only doctors who can diagnosis,
and 'treat' autism in our state. You can imagine what her schedule looks
like. When I initially called a few weeks ago I was originally given a
January date. Umm... no. My son is not in a place where he can wait that
long. He is having some really serious self injurious behaviors, and I need
him to see the doctor. Soon. So, I explained the situation. I said
there was no way my son can wait 5 months. He's not a new patient. He's
been her patient for over 7 years, and I have only brought him in 2 in
the last 7 years. This is an emergency. She checked with the nurses, and
found that there was an opening due to a cancellation in a few weeks. I
really didn't want to wait a few weeks, but it's better than months!
I get the appointment, and the day comes to get together to see the
doctor. I forget how terrified he is of the whole process. We get there,
and he doesn't want to exit the van.
He doesn't like parking garages.
They're loud, and ominous. I don't blame him, but he must go, so Dad
wrestles him into the building. We run for the elevator out of breath,
and remember that he hates those, too. We finally wrestle him into one
of those, and end up on the wrong floor. This goes on for a bit, but you
get the idea. I am just thankful that Hubby is there to help, because
Beans is way too big for me to pick up, and move.
doctor comes in, and asks what his 3 biggest gains with motor skills has
been recently. I think this is to focus on the positive, but it also
let's her know where he is developmentally. We told her about his new
climbing abilities. He'd never climbed before, and he'd never thought
about pushing a table, or a chair around to reach higher items. He also
learned to drink from a straw, and an open cup with some spillage. Then
comes all the 'no' questions' that I have become accustomed to. "Can he
dress himself, use the potty, point, shake his head yes, or no" I am
used to those, and after this many years don't feel sad about it when
answering, because I'm used to it. Beans is Beans. He is who he is, and
he'll do what he'll do. It's not my job to judge it, but just to support
growth from where he is at. We talk about aggression, and how most of
it is directed at himself. She asks if he ever tries to tap at (his
favorite stim is tapping on items) others. He can, but it hasn't been
too awkward. She remind us it will be here in a few years when he is 20
and 6 foot tall. Yes, I admit... that might be a little scary coming at
you in the grocery store. He loves graphic tees, and bright designs. He
will try to tap on any he sees even if a a complete stranger is wearing
Meanwhile, Beans slinks to a corner, and poops.
Awesome.He doesn't care that he's in a strange place with people he
doesn't know. This pretty much answers the potty training readiness
We discuss Beans pica, and serious meltdowns
over everything. His meltdowns tend to be somewhat about his pica,
because he can't always eat what he wants. I have found him in the
bathroom chugging shampoo, and eating the bar of soap like it was a
sandwich. He wants to taste the sunscreen, and eat the weeds outside.
When prevented from doing that he gets very upset. She asks how his
sleep has been. I say not great, but I hadn't thought much about it. It
was a little worse lately, but not much different. She asked when he
finally goes to sleep at night. It's between 11:30 PM and 1:30 AM every
night, no matter if he is woken up early or not. If he left to his own
devices he will sleep until 9 or 10 AM, but if not he doesn't make up
for that by sleeping earlier. She thinks some of his behaviors could be
tied to his poor sleeping habits. It seemed that I had gotten so used to
him not sleeping that it never occurred to me that he might need more
than he is getting, and that his brain is not functioning as well as it
could with more sleep. Like I had said before, it almost seems that when
one is just trying to survive there's no time for problem solving
effectively. Just trying to keep up with the present moment is all one
can do in this mode. Common sense solutions tends to be just out of
Ultimately, she wanted to start him on
Melatonin, and see if that helps with sleep, and in turn his aggression.
If it doesn't then there are 2 stronger meds to try, but Melatonin is
where we will begin. She also wants us to see a behavior psychologist in
the same building (eek!) to help manage his behaviors. She warned us
several times that what is cute now won't be in a few years. He already
is outgrowing us, and she earned some points from me from referring to
me as a very, slight, slight woman. lol She said what he does would not
be a concern if he were 3, but he isn't. He is almost 10, and he is big
for his age. My husband and I both weigh under 140 pounds, and Beans is
likely to outgrow us by the time he is 15. He did not inherit our small
frames. I think I remember her saying something about this when he WAS
3. I was not concerned at that time, because I thought I knew how to
handle things, and I did.
On my way home, I thought
about the fact that it's been more than 7 yrs since Beans was diagnosed.
That seems like a lot of time to pass, but it doesn't feel like it.
During his first appointment he was so quiet, and the other 2 sat in the
corner playing with toys. This time he was alone with us, because CJ
had practice, and Bubby went with her. She can drive, and is planning
her school courses for her adult life that is coming. Bubby is able to
be independent in ways I wouldn't have imagined 7 years ago. Beans is
still Beans. He has grown some, but I do feel a little bit of sadness
when I think of the ways the other 2 have, and will continue to grow,
and he won't.I think when he was 3 it had not occurred to me how this
was going to be my life. That reality is setting in now. Bubby will
likely live on his own, and be at least mostly independent. Beans will
not. Ever. He will live at home, or in a care facility for the rest of
his life. The permanence of the situation had not sunk in when he was 3,
and now it has. It's a gentle tug at my heart that I can't explain. I
don't have any new information, but I do have a new understanding of it.
far, the Melatonin has been a great success. He has gone to sleep the
last 3 nights before 11 PM, and slept through the night 2 of those
times. As she had predicted, the meltdowns have greatly subsided. I am
hoping for continuing success.