Every Saturday and/or Sunday, Brandon wants “potatoes cheese”. We know what this means. The potatoes are baked. Sometimes, they go in the microwave, depending upon how hungry he is.
When the potatoes are done, the middles of the taters are scooped out and mixed together. But not like mashed potatoes. No milk can be added to these potatoes. Brandon will let us know “no milk”. However, he will say “butter” over and over until he is happy with the amount of butter. From experience, we know he prefers real butter. None of that fake butter in the tub for these potatoes.
The mashed potatoes (with no milk) and butter go back into the potato skins. When this happens, Brandon starts to get excited. Happy jumping happens. Rubbing of the hands together happens. He knows what is coming next. The excitement is almost palpable.
Cheese. Yellow cheese. Not white cheese or yellow and white cheese together. Just yellow cheese. Shredded yellow cheese. Not the brick style yellow cheese. Shredded yellow cheese in the bag.
The yellow cheese is sprinkled on the top of the potatoes. A lot of yellow cheese is sprinkled.
Now they are ready and Brandon is happy. He will sit at the table and dig in. His iPod is always beside him and headphones are on. He eats. He is happy. And we are happy he is eating.
Our oldest son, Alex, works at a high end grocery store and will occasionally bring yummy stuff home. This past weekend, he brought home potatoes smothered in a cheese sauce. He said he knows how much Brandon likes his potatoes and cheese. Awww…so sweet of him to think of his brother.
I took a bite and they are delicious. Brandon was standing over me sniffing my hair so I asked him if he wanted a bite. “No, thank you.” I was stunned. Seriously, he loves potatoes, he loves cheese. I asked him to at least smell the different potatoes. He did and promptly said “no thank you”. Big eye roll from me. I guess they didn’t smell right. But, at least he smelled them. Maybe next time he will take a bite.
Lesson for the day….he likes what he likes. Don’t we all?
Having children is an exciting time. We wait for all the milestones to be
reached. Walking, talking, potty
training, interacting with others, developing interests, etc. And we celebrate those milestones. We take pictures of the first steps, we
record the first words, we share the milestones with family and friends. We talk about how our sweet little bundles of
joy are navigating pre-school and how they are learning so many new things,
like reading and writing.
Steve and I were talking last night about some of Brandon’s
milestones and how proud we are of him for the things he has accomplished. Brandon has done these in his time and with
lots and lots of work. One of the things
we realized early on was that Brandon’s timetable was very different from what all
the parenting books said. Will Brandon
ever drive a car? Probably not. But he has done some pretty incredible things
that seem to come so easy for others.
Warning…there will be talk of peeing and pooping.
Potty Talk
Getting Brandon to the point of being fully potty trained
took years. This is not uncommon in
children with autism. He was 8 years old
before this happened. He wore diapers
and pull ups until he was 6. I don’t
fully remember when he decided to urinate in the toilet, but it was around the
age of 7. We were so excited and I
remember thinking pooping in the toilet couldn’t be far behind. Right?
Nope.
When Brandon would poop, he would smear his feces. It got worse and worse. It would be everywhere. Steve would go in and clean the floor and the
walls. I would clean Brandon. It was not pleasant, but it had to be
done. One night, Steve yelled for me because
there was more smearing. We moaned and
groaned about it and I then decided that Brandon should be helping to clean up
his mess. We got him some gloves, some
wipes, and told him to start cleaning.
This did not go over well and it took over an hour, but we stuck to it. After the third time doing this, Brandon
started pooping in the toilet. And that
was it. He has not pooped in his room or
smeared since that time. The first time
he pooped in the toilet was a HUGE celebration!!!!
Water Water Water
Brandon loves water.
He loves his bath time. When he
was little, he would get in the tub and turn the water on and just sit in the
water. He would do this multiple times
per day. While we appreciated his love
of water and how calming it is for him, we did not appreciate him putting the
stopper in the drain and overflowing the tub. This happened a lot.
We knew the overflowing of the tub was causing damage, but
we weren’t sure how to stop him from getting in the tub. Our solution was to lock the bathroom door at
all times. Our other sons knew how to
unlock it, but Brandon did not. We
eventually started leaving the door unlocked occasionally and Brandon
eventually learned to not get in the tub without telling us. We finally had our bathroom remodeled a few
years ago and the entire subfloor had to be replaced because of all the water
damage. We knew the floor was “soft”,
but we had no idea it was as bad as it was.
Now, Brandon takes a bath/shower every night and he knows when to turn
the water off. Woo Hoo!!!!
Haircuts
Haircuts were the bane of our existence for years. Brandon hated getting his haircut. We thought maybe it was the sound of the
clippers, so we tried scissors. He hated
that, too. Haircuts were absolutely
horrible. We would have to physically restrain
Brandon to get near his hair. Grandma
and Grandpa tried taking him to a salon with no success. We tried bribing him with everything he loves….Skittles,
Taco Bell, baths…nothing worked. We
tried letting his hair grow, but the longer hair bothered Brandon. He didn’t seem to understand that the haircut
was the way to get rid of the longer hair.
When Brandon was 11, I took him with me (again) when his
brother was getting his hair cut. Brandon
was anxious, but he watched his brother get his hair cut. I then asked the stylist if Brandon could sit
in the chair. She was absolutely lovely
and let him sit in the chair, she showed him the clippers so he could touch
them, and she let him smell all the lotions and hairsprays. This was the farthest we had ever
gotten. I took pictures of everything so
I could show them to Brandon at home. I
made an appointment for Brandon for the following week with the same
stylist.
I prepped Brandon the day of the appointment. We looked at the pictures and we talked about
what was going to happen. I took
Skittles with me and promised him Taco Bell after his hair was cut. And it worked!! It took a bit longer than it does now, and we
discovered he does not like to wear the cape.
I gave him a couple of Skittles every couple of minutes that he was
sitting still. And we had Taco Bell when
his hair was nice and trim. We told
anyone who would listen about his haircut success! We have not had one problem with haircuts
since that day. He still does not like
to wear the cape and he always gets Taco Bell after. And his order is always the
same…six crunchy tacos with meat and cheese only.
Talking about this with Steve last night helped us realize
just how far Brandon has come. Sometimes, we need that reminder. This is a
very short list of what Brandon has been able to accomplish. I think there will need to be a part 2 (and 3
and 4 and 5).
I have been thinking about Brandon and all of his sensory
needs. This is so common with folks with
autism and Brandon has so many of them.
How have we managed all of this over the years? What have we tried that worked? What didn’t work?
I am almost certain Brandon has sensory processing disorder. Simply put, someone with SPD has difficulty processing information brought in through our senses. Hearing, vision, smell, touch and taste (https://wordpress.com/block-editor/post/autismsnippets.com/141) Brandon needs in all of these areas. All of them have been with him since he was very little.
Hearing
Brandon does not like certain sounds. He will cover his ears if he hears a baby
crying. If the baby is close to Brandon,
he will cover his ears and walk away. He
does the same things when our dogs bark (so do I, because they are loud!). Going to Wal-Mart on a Saturday morning with
Brandon is something we will never, ever, ever do. Trust me.
At that time, Wal-Mart is most likely crowded with loud, crying
babies. And people having different
conversations and talking about different things. And carts making noises, freezers making
noises, etc. etc. etc.
Brandon has his iPod and headphones with him whenever we
leave the house. We have been told
before that we should take his iPod away as a disciplinary measure. We will not.
His iPod and headphones provide a safe space for him in a very loud
world. If only we could get him to be a
bit more gently with the headphones and not break so many.
Vision
Brandon has a couple of sensory issues related to
vision. He prefers darker lit rooms and
no overhead lights. Except the one in
our family room. He will turn that
overhead light on sometimes when I leave the room. I always turn it off when I get back and tell
him that I am winning this one. He
doesn’t argue with me. I honestly think
he is joking with me and it makes me smile.
He likes his disco light and will follow the lights on the
walls and ceiling. He spins his Mardi
Gras beads so the sunlight bounces off of them.
In the evening, he gets close to a lamp and spins them. He will occasionally take a 2-3 minute break
to spin his beads and then he is okay for a bit. It helps him calm himself.
Smell
Brandon smells everything he eats before he puts it in his
mouth. Even hot dogs and cheese. He
doesn’t do this with every bite of food, but before the first bite, he is
smelling it. And if it does not smell
right to him, he isn’t eating it. He
loves to smell people’s hair. He loves
to smell the hair of people we don’t know, so we watch for that when we are
out. Our friends and family know this is
going to happen. We choose to see it as
Brandon giving us a quick kiss on the head.
With our friends who have less hair, Brandon will smell the bald head or
the shoulder. Same with someone wearing
a hat.
He smells candles, the mist coming out of the diffuser,
shampoo, flowers, books, and on and on.
We were sitting on our patio the other night and had lit a citronella
candle (I hate mosquitos and they seem to love me). Brandon must think it smells good, because he
kept smelling it and getting closer and closer to the flame. We have to remember to blow it out before we
come in so he doesn’t burn himself when he is outside without us.
Touch
Touch is a big deal for Brandon. He is not comfortable with too much touching
from others. It was hard to keep him
holding my hand when he was little, because he doesn’t like it. His hugs are a bit awkward and we have to
remind him sometimes to put his arms around us and squeeze when we hug
him. Tags in shirts and pants have to
be removed before they go into Brandon’s room.
If we forget, he will rip the tags out himself and has torn more than a
few t-shirts. Whoever came up with the
tagless shirts is a genius. We need that
with pants now.
Brandon also likes deep pressure. When he was younger, he slept under a
weighted blanket. He had a weighted
vest, also, but he didn’t like that as much.
Brandon likes what we call squeezes.
If he is feeling overwhelmed, he will ask us for squeezes. With me, he prefers hand squeezes. He wants me to squeeze his hand as hard as I
can. This always makes me a bit nervous
because I don’t want to hurt him. If I
don’t squeeze hard enough, he tells me “more”.
Sometimes, I can almost feel him relax while I am squeezing.
He prefers Steve for head squeezes. Steve puts his hands on either side of
Brandon’s head and squeezes. To be
honest, there are times I have had a sinus headache that I think a good head
squeeze would help me feel better.
Brandon likes us both for bear hugs.
Brandon does not put his arms around us with bear hugs. He keeps them to his side and we
squeeze.
Brandon had a massage recently. I had talked with Brandon about it before we
went. He and I had gone for a quick tour
of the building before I made the appointment. I told him there would be a
quiet room with no bright lights and that someone would be squeezing his arms
and legs. I forgot to tell him about the
lotions. He spent five minutes picking
out the lotion that smelled right to him.
And then he laid quietly for 20 minutes.
We will be going back.
April is Autism Awareness Month! We like to spread awareness all months of the
year, but in April, we may talk about it more.
I made a sign for our front door a few years ago that we hang in
April. The St. Louis Cardinals sign has
to wait until May. Sorry Steve! We may share a few more autism related memes
on Facebook (although we do a fair amount of that already). And I started a blog right before this
awareness time starts.
Time to focus solely on Brandon. Ha!
That just isn’t possible. We are
all in this together. But I will tell
you a bit more about some of his sensory needs.
Specifically related to his eating habits.
The gustatory system is the sensory system in our bodies
that is responsible for the perception of taste and flavor. That’s a fancy way of saying it is what
happens in our mouth when we eat and drink.
Brandon has always struggled with finding foods he will eat. He smells everything before he puts it in his
mouth. Everything. And if it doesn’t smell right, it isn’t going
in.
In clinical terms, he is hypersensitive to oral input. Some examples of his sensitivity:
very picky – textures and smells are sometimes
hard for Brandon
may gag at times
may have difficulty chewing and swallowing
he chokes
Brandon is picky. He
is really, really picky. Here are his
current favorite things to eat. Hot dogs
with cheese, taco shells with cheese, mashed potatoes and cheese, macaroni and
cheese, waffles (frozen, never home made), and ramen noodles. You may have noticed a pattern with the
cheese. Brandon loves cheese. Orange cheese (cheddar) and white cheese
(mozzarella) are his favorites. It can
be shredded or the brick type. And he
really likes the mixture of white and yellow cheeses. Most food and drink items are classified by
color.
He will eat a few other things. Brandon will do the occasional 3 egg omelet,
as long as it has cheese. He will eat a
cheese quesadilla, as long as we have the right tortillas. I never knew they weren’t all the same until
Brandon taught me. He will occasionally
eat some chicken and ground beef. And
spaghetti and long as we put “spaghetti cheese” on it.
When Brandon really doesn’t like what we are
making/encouraging him to at least try, he will put it in his mouth and
immediately gag. That’s his way of
saying he is quite unhappy with what we are asking him to do. He will then chew
up and swallow whatever different food it is.
Sometimes he asks for more, sometimes he doesn’t. We always thank him for trying something
new.
There are the times he will chew on something for 10 minutes
because he can’t swallow it, even with a bunch of encouraging and cheering him
on. At that point, he just spits it out.
And that is okay.
There are the times Brandon loves what he is eating. He tends to eat too fast and needs us to make
sure he slows down. Choking
happens. Every few weeks someone has to
do abdominal thrusts. That’s one of the
not very much fun parts of Brandon’s autism.
The choking scares the crap out of all of us.
He stopped eating.
When Brandon was 8-9 years old, he started what they call “selecting
down” his food choices. At one point,
all he would eat was oatmeal cream pies.
No matter how hard we tried, he would not eat anything else. And then he stopped eating those. His aggression was increasing and he was not
sleeping. Well meaning friends and
family told us he would eat when he gets hungry enough. Some suggested he was just being stubborn and
trying to get his way. We knew in our
hearts that him not eating was not behavioral. He literally could not eat.
Brandon had a wonderful child psychiatrist who worked with
us during that time. She would call me
to check on him. And she always asked how the rest of us were doing. When Brandon lost too much weight, the
psychiatrist suggested hospitalizing him.
That was one of the hardest decisions we ever made. He wasn’t sleeping, he wasn’t eating, he wasn’t
focusing on anything. He was 4’6” tall
and weighed 48 pounds (average weight for that age was 63 pounds). He was too thin and not getting any
nourishment.
We had him admitted to a hospital for adolescents. He was there for 5 days. In hindsight, it was the best decision we
made at that time. They worked with
medicines, got him to sleep for more than an hour, and he finally started
eating again. The day we went to visit
and he was eating a big bowl full of cereal was one of the best days ever. Brandon was on his way back and we were
thrilled. It took several months of
trial and error to get him to broaden his horizons and his palate. We worked with a behavioral therapist who
spent meals with us to help us know what to do.
And how to do it. We started with
the basics of getting him to touch the food to his lips and went from there.
We made it!
It’s hard to believe that was 11 years ago. He is still picky. He is still very selective about what he
eats. But he will try new things
occasionally. He now loves fried cabbage
and roasted Brussel sprouts. He doesn’t
request them, but he loves it when I cook those veggies. He will eat strawberries and an occasional
piece of pineapple.
I recently made corned beef and fried cabbage. Everyone sat down at the table, except Brandon. He was quite insistent that he did not want to eat any cabbage by repeatedly saying “no thank you cabbage”. He would not believe me when I told him he likes cabbage. We let him stay in the family room and we all began eating. Brandon finally sat down with us and said “eat”. I asked him what he wanted to eat and he pointed to the bowl of cabbage and said “stuffing”. Stuffing it is!! And he had two big helpings of it. I knew he liked cabbage!
I don’t know
about everyone else, but I love my essential oil diffuser. I really like the earthy tones…sandalwood,
eucalyptus, incense. I like the way they
make my house smell and with four men living in the same space, I need some
good smelling stuff occasionally.
Two days
ago, Brandon broke my diffuser. He was
jumping and it fell off the side table I had it sitting on. This has happened before, so I picked it up,
put it back, and cleaned up the mess.
And then I pushed the “on” button and it didn’t work. So I unplugged it, plugged it back in, and
tried again. Still nothing. UGH UGH UGH
I have lived
with Brandon for the past 15 years. He
has always jumped. A lot. When he was little, it didn’t seem to matter
as much. Looking back now, I think maybe
we should have addressed this a bit sooner.
But, we did not. Why was it
easier when he was younger? He wasn’t 5’
10” and didn’t weigh 145 pounds. Yep, he
is thin….all that jumping around keeps him so, I guess. I wish that worked for me.
When he
jumps now, it’s louder, it’s more intrusive, and it can be more
destructive. His “typical” jumping isn’t
as bad as his “angry” jumping. The typical
is calmer and not at all aggressive in nature.
This jumping is more sensory in nature.
Why does he do the typical jumping?
For Brandon,
his typical jumping seems to be a way for him to regain control in a stressful
situation. If he is working on a puzzle,
we know he needs a break when he gets up and starts jumping. And there are those times when it is Brandon
dancing to whatever song is playing on the iPod. Sometimes, this jumping is an escape
tactic. He does this at school. His teachers have told us so many times over
the years that if Brandon does not like what they are working on, he escapes by
getting up and jumping.
Brandon’s
angry jumping is something very, very different. The angry jumping is behavioral. Completely and totally behavioral. If he does not get something he really,
really wants, he will jump with the entire force of his body and land with both
feet on the floor at the same time. He
will jump as hard as he can and land on furniture. And it will shake the entire house. It is loud, it is aggressive, and it can be
very destructive.
What has
Brandon’s jumping broken? Lots of
things. The cedar chest that belonged to
my grandma. The plate glass window in
our front room (that was an expensive fix).
More than one entertainment center.
Tiles on the bathroom floor. Three
couches. The couches are usually broken
within the first 2-3 days of it being in our home. We just know it will happen and we know that hubby
is going to have to provide extra bracing.
We are prepared.
Same thing
with his bed. Metal bedframes don’t
work. They bend pretty easy with the
jumping. Several years ago, we were
given a solid wooden (particle board, actually, but pretty strong) bedframe for
Brandon. But it is time for a new
one. The whole thing just sags a
bit. Hubby is going to build a new one and
maybe Brandon will want to help.
Do we get
angry when Brandon breaks our stuff? Honestly,
there are times we do. But, we also recognize that Brandon doesn’t
mean to break stuff. He is angry and
trying to get it out. We fully believe
that he is not trying to break things.
It’s just an unfortunate byproduct of a tantrum.
We are
working with him on recognizing his emotions.
We also encourage him to use his words to tell us he is angry rather
than jumping. I remind Brandon on a
regular basis that he can go in the backyard and jump all he wants. When he is angry, he isn’t interested in what
is outside. It’s a tantrum. He wants attention and it’s hard to ignore
the house shaking and things falling off of tables.
It isn’t
happening as often as it was 3 months ago.
But it does happen. And this last
time….it broke my diffuser. The positive
side of this? I got to go to Target to
get a new one. And I bought a bunch of
other stuff, too. And now, my house
smells good again.
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
Brandon.
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
doesn’t.
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
love Brandon.
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.