His Favorite Food

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?

Success!!

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). 

All the Senses

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.

It’s All About the Cheese

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!

Welcome to Autism Awareness Month – in 2 days.

Not the Diffuser!

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.

Mario Kart Gone Wrong

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.