It feels like we are finally coming out of winter. God willing, spring will be here soon and the
sun will shine again. The winter of
2018/2019 will go down as one of the worst winters ever in our house. It snowed more than in recent years. School was cancelled. A lot.
Brandon likes routine. He likes
knowing what is coming next. Schedules
are our friend and when the schedule is disrupted, it goes one of two
ways. One, Brandon rolls with the
punches and we create a new schedule.
Or, two, he does not roll with the punches and it’s a day of trying to
make the impossible happen. I,
unfortunately, can not make the school be open when I want it to be (but
wouldn’t that be great?). I also can not
make snow and ice disappear so that he can go outside and jump or swing. This winter has been especially hard for
Remember the episode of The Simpson’s where Bart and Lisa
follow Homer around day and night asking him to take them to Mount
Splashmore? If you haven’t, you
must. As parents, we laugh because we
know how that is. Our children begging
us to go to McDonald’s until they just wear us down and we finally say “Yes, I
will take you to McDonald’s. Will you then
leave me alone and quit asking me?” So, off we go to McDonald’s and the kids
are happy, the parents are happy and all is right with the world.
It works a bit differently in our house and this became evident
this winter. Brandon has autism. He also
has obsessive compulsive disorder, OCD.
Brandon’s OCD manifests in his need for rituals. One example: after he is done eating he will
say “Mom start”. I know that I am
suppose to say “Did you have a good time eating your dinner?” He says “Yes” and I reply with “Say it once”. And then we move on. Everyone who lives in my house knows this is
the ritual and that it helps Brandon transition to the next activity. This ritual happens many times a day with
many of his activities. Going to the
bathroom (yes, we have to ask him if he had a good time in the bathroom),
eating, taking his medicine, going out with his support worker, etc. Telling him to “say it once” usually works
well. And then there are the times it
Back in November, we started seeing the signs of a ritual
spinning out of control. He became
obsessed with the video game Mario Kart.
Brandon has played this game for years.
It was, hands down, his favorite.
He would play the game daily for 20-30 minutes, we would ask if he had a
nice time, he would say yes, and then we would do something else. In November, the moving on to something else
stopped. He became more and more
obsessed with the ritual of saying “play Mario Kart” instead of playing the
game. So, in our infinite wisdom, we
tried having him play the game every 2-3 days.
We thought maybe that would help.
It did not.
He became more obsessed and starting acting out
physically. He would hit and slap us,
generally targeting me. The obsession
was still there, even though the game was gone and he no longer had access to
it. Brandon would say “Mario Kart” all
day long. Literally all day long. Playing the game no longer scratched that
itch of OCD, it became all about the ritual.
Brandon would follow me all over our house and get two inches from my
face, all while saying “Mario Kart” over and over. He wasn’t sleeping because he was too busy
saying “Mario Kart” (which also meant I wasn’t sleeping), he wasn’t eating
(that has never been a problem for me), he wasn’t listening to his iPod or
watching movies on the laptop. He was not
able to focus on anything but saying Mario Kart. We stopped responding and he was not
happy. This went on for 3 very long
months (and remember that Christmas break was during this time so that schedule
was gone, too). There were trips to the
doctor, conversations with the school, conversations with the case manager,
conversations with anyone who was willing to listen. It was a really, really
challenging time and we constantly asked ourselves how long is this going to
last. We were exhausted. All of us.
How did we make it through, because this was really, really
hard. There were times when our oldest
son would step in and tell me to go take a break. The youngest son would do this, too. They would stay with Brandon and let me leave
the house for a bit to go to the store (any store, it didn’t matter to me).
When Brandon was targeting me, Steve would take him out of the house for an
hour or two, knowing her was going to hear “Mario Kart” for the entire time. I would hide in my bathroom and call my two
best friends who would listen to me cry, even though they had no answers. We were there for each other because we all
My Facebook friends were also a support to me at times. Sorority sisters from college were quick to
offer a “you got this” and other words of encouragement. Friends from high school who are very strong
autism moms would send virtual hugs that I treasured. (This is why I love FB, by the way.) When it feels like it will never stop, never
get better, never end, reach out to those who will listen, give you a break, or
just come over to hang out when you just can’t leave the house. Because the
dark times will, eventually, give way to light.
I now feel confident saying we are on the other side of this
dark time. From this relatively short
distance, I can tell you we did not handle some of this very well. There may have been yelling, crying, and
cursing from all of us. Our level of frustration was just as high as
Brandon’s. There is one thing we did do
well, though….we held our ground. My
husband, our other two sons, and I all agreed that for Brandon’s health, we had
to stick to it. There wasn’t another
choice for us. It wasn’t always pretty,
but we held firm.
What compelled us to stick to it? The number one reason is that it is what is best for Brandon. And we kept telling ourselves that. While we still have times with the obsession, it is much easier to handle now. Brandon is able to stop himself more quickly than before. He is now sleeping all night long. He is eating and gaining back some weight he lost. And he is beginning to focus more on other things – his puzzles, his lap top, and reading some Little Critter’s books (which are great social stories). Today, Brandon walked over to me, sniffed my hair (his version of a kiss), and walked away. We are getting back to our normal.