Dinosaur Karen

My Mom passed away from melanoma cancer in 2009.  My mom, Karen Rust, would have been a fantastic grandma.  She would have been Max and Dexter's biggest fan.  I can picture her running in all of the Autism Speaks Races, and wearing blue the whole month of April.  She might not be here on earth, but I know she is watching out for our family.

The one thing that has always been hard for me was not having my mom physically around for the birth of Max and Dexter.  Max was born two years after my mom passed away.  There are things I wish I could have asked her about being pregnant, about caring for my body after birth, about caring for newborns, and just having the time with my mom surrounding the birth of my boys.  I know she was there in spirit, and I know she gave me a lot of strength, but there is something about being physically there. 

Max lives in a world of dinosaurs.  He believes dinosaurs are alive.  Max is a dinosaur and wants to protect and love all the dinosaurs.  Dinosaur world is where he goes when he is overwhelmed with the real world, it is his safe place. It is hard to get him to leave dinosaur world.  A few months ago he started talking about a dinosaur named Chomp.  Chomp the dinosaur would come back daily and Max would incorporate him into his dinosaur world.  Soon after Chomp another dinosaur came along and this dinosaur had the name Karen.  At first I thought it was a funny coincidence.  But honestly we have never said "Grandma Karen" to Max.  When talking about my mom we either say "Grandma" (which if you knew my mom you know she would have hated being known as a grandma) or "Mommy's Mom".  
Karen soon became a regular in Max's dinosaur world.  He would talk to Karen, tell us about Karen, and remind us that Karen was in the room.  Karen would come up more and more especially when Max was upset, he would call for Karen and tell Karen what was making him scared.

I picture my Mom in heaven with her big smile (also laughing) because her grandson had turned her into a dinosaur.  A large, dirty, loud dinosaur.  She is loving it!  And Karen is here to stay.  Max talks about her daily.  We have asked Max where Karen came from, and he just says "It Karen!"

Just now I asked Max the following:

Me:  Tell me about Karen.

Max:  I love Karen.

I do too Max.  I do too.

So as cheesy as this sounds, my mom is here, she is a dinosaur.  She is protecting Max from the scary real world.  She protects him from the loud sounds, the bright colors, and the confusion of daily life.  Karen the dinosaur is pretty amazing.  And I love her.

Honesty

Writing a blog about our autism journey has been so therapeutic.  Will and I are able to look back and see the progress that Max and Dexter have made in the last 2 years.
This week I have been looking back a lot.

Max and Dexter have made progress but some days, weeks, even months feel like we are drowning and can't catch a breath.  That has been the last two weeks.  Max is regressing in school and at home.  He isn't sleeping, and it is taking a toll on our family.  He tantrums most of the night. From about 5pm until he falls asleep.  And his tantrums are becoming more violent and extreme.  He is also a big 5.5 year old, weighing 53 pounds and 48 inches tall, who can physically hurt you if he is in a rage/manic stage.  We do a lot of therapy methods at home, and try to stay as calm as possible, but some nights I loose my cool.  I yell and cry and get upset with Max.  I then have a pity party and Will tries his hardest to tell me what a great Mom I am.  These nights are hard, and I know it is just a part of our life, but some days I just want some normality.

Why the tantrums?

Will and I have been asked "Are you sure they are autistic?  They seem so calm when you are out. And your pictures show how happy they are."
Another common statement we often hear about Max and Dexter is "They are just acting like children, they are growing up, you must be too soft on them, and you are worrying to much."

I often don't know how to respond to these statements or questions.  Two years ago I would have been on the defense, but now I am confident with both boys diagnosis.  If you spend time with them at different parts of the day, and for more than a few minutes at a time, you will begin to understand what Will and I experience daily.  Max often holds emotions in all day at school, but then at night his brain is overworked and overwhelmed.  This is when he becomes aggressive, angry, and what other people would describe as depressed.  His emotions change minute to minute some nights. He is being taught at school and at home (through therapy) how to show emotions in a positive and constructive way. His processing speed is slower than a typical child so progress is slow.

Real life vs. social media life can be deceiving.  I try to share our real life.  But if I only showed the hard times I would get depressed.  I find comfort in looking back at the happy and positive moments, it also shows the progress we have made as an Autism Proud family.

Both Max and Dexter have such amazing attributes. 

Max is so sensitive and has been since he was born.  He studies the world.  He loves his family, and even takes a picture of us to school with him each day.  He loves Dinosaurs more than anything, to the point where he believes he lives in a dinosaur world.

Dexter is a ball full of energy.  He gives the best hugs and can smile his way out of anything.  He loves letters and has been able to identify the letters of the alphabet since 14 months old.  He is really into video games, and can make his own Mario Maker levels.  He also is a great brother to Max and has helped Max find his physical voice.

Will and I have days filled with fear and doubt, but they are often forgotten when we see the boys accomplish something new, or put a shirt on by themselves for the first time. Those moments make us feel like we are doing something right as their parents.

When Sharks Attack and Communication Declines.

Max is really into sharks and dinosaurs right now.  He is currently playing in the kitchen with 32 large dinosaurs, and about 6 Great White Sharks.  He pretends the sharks are in the water on the kitchen floor, and the counter is the beach.  He plays like this for hours upon hours every single day.  He plays by himself and doesn't want anyone, or anything, touching, moving, playing, or interrupting his Dinosaur and Shark display.  Max also makes Dinosaur sounds and pretends he is a dinosaur.  Which is cute at first, but Max literally thinks he is a dinosaur.  Trying to get him to move away from dinosaur play is a struggle daily.  He will stay in dinosaur mode for hours, no words would be used but instead he will growl at you if you try to talk to him.  He will jump on the furniture, throw furniture at the wall, and hit if you try to interrupt his dinosaur play.  No words.  No communication.  He does this to avoid doing things and to hide himself in another world.  The real world is daunting and scary.  His dinosaur world is perfect, and he controls all of it.  

Max made great strides with communication when he first started Giant Steps.  Huge strides.  Which we expected.  He went from not talking to picking up words and more words.  Max has what I like to cause a "Box" this box can be full of words, but once new words come in, old words leave.  The box has a limit.  And that is what we are currently dealing with.  People tell us all the time how he is talking more, or how he communicating better.  Yes, true, compared to where he was at.  But in reality he is 2 solid years behind his peers. If you look at a typical child language development for an almost 5 year old you will notice how far behind Max is.  Max in the last 6 months has plateaued.  He hasn't made much improvement in language skills.  He can't answer simple questions like:  What is your name?  How old are you?  He is working hard at school, but he gets frustrated, and overwhelmed.  His poor little brain is doing all the work it can.  So right now, as hard as it might sound, Max is at his peak of communication.  Could he improve?  Absolutely!  Will he still be working at language development at school - yes, for sure!  But the plan is to also make sure he has other ways to communicate. 

What is he working on at school?  These are just some of them.
-Getting dressed on his own.  Pulling up his pants, putting on a shirt, etc. 
-Recognizing all the letters of the alphabet, and numbers 1-20.  (He is good at this one.)
-Writing his name. 
-Recognizing familiar people in his life, and saying their name. 
-Introductions:  this is/that is
-The buddy system. 
-Not running off but staying in a line or in a group.
-Not going into dinosaur play while at school.  Staying Max all day at school. 

Comparing Max to typical children is hard.  It isn't a good indication at how far Max has come.  Will and I try not to compare but lets be honest, comparing is a natural.  We compare everything in life, from cars to houses, to hairstyles, to grades on tests.  It is a social norm.  Having a child who is developmentally behind can be frustrating, disappointing, and hard.  Will and I still get sad when we see children the same age as Max doing so much more than him.  Riding a bike, coloring a picture of what they did during the day, talking about their friends, writing their first and last name, picking out mismatched outfits and making decisions about their day.  This in no way means that I am not happy for these children, I am, but they are not MY child.  Max is unique, he is developing differently, and different is awesome.  But different is also hard, frustrating, and at times not socially acceptable. 

Here is a great video that illustrates these thoughts:
What people with Autism want you to know. 

So if you want to know about Dinosaurs, Sharks, and how to communicate with them Max can be your guide.  He is my guide.  He is guiding me on a journey that I never thought in a million years I would be on. 

On the floor, in the kitchen, with the dinosaurs.