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.

What is it like to live in the dark?

It is 5:30 on a Sunday night.
We are currently sitting in the dark.  Not because we are watching a movie, or going to bed, but because Max hates lights.

This is Max running to turn off the lights I just turned on.  (My bad.)

Max's OCD and anxiety have been getting worse.  He follows us around the house closing all of the doors. The doors and lights have to be closed and off for him to be able to relax and calm down. He has to have the lights off (or what he calls "the moon") from sunrise to sundown.  It is becoming a hard way to live.
If we put the lights on he goes from calm Max to over-the-top, out-of-control Max.  He cries, tantrums, throws, bites, kicks, and argues - which can last for up to 2 hours.  Yes, we have tried a lot of coping mechanisms, we have tried tents, sunglasses, and other ways to make it dark for him beyond just turning off the lights. (Because that just leads to a meltdown.) Will and I have talked to his teachers, other autism families, consulted Dr. Google and alas they have no ideas other than what we have been trying.

We are hoping this is a phase.  One that will go away quickly.  But for now we are trying our best to stay calm.

That is Max.  In the dark.  Under a tent.  With the lights off. 

Autism just doesn't go away, there is always something new and unpredictable.  So when people ask "He seems to be doing better?"  or "Is the Autism going away?" Or they comment to us how "lucky we are to have an easy autistic child!"  Yes, we are very blessed to have a sweet boy.  Max struggles daily, and sometimes his struggles come out in unforeseeable ways.  Autism is magical, but is also frustrating and hard and something our family lives with.  There are silver linings and amazing moments, but there are also moments where I want to run and hide.  (And cry and wonder what the hell I am doing?) 

So currently if you come to our house, bring a flashlight, and some patience.  You will be in the dark.  And Max still doesn't wear clothes in the house, so expect him to be in his cute boxer briefs.

*And for me writing down my frustrations is the best way to deal with stress.  Hence this blog post.*

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. 

A bunch of confessions

Hey, Dapper Dan
You've both got your style
But Brother,
You're never fully dressed
Without a smile!

This is one of my all time favorite songs from one of my favorite movies, ANNIE.  I used to watch this daily as a child. 
You're never fully dressed without a smile. (Video Link)

I try my hardest to have a smile on my face most of the time.  Confession is that this has become a great method to hide my actual emotions.  I realize this, I am working on it. 

Confession #1 Max has been having a very hard time.  It would appear by pictures posted that he is doing well, and in some areas, yes this is the truth.  But Max has been very tough lately.  He is having manic episodes, combined with very down crying episodes.  This started about 6 months ago and it has escalated from home to school.
Last night Max took all the food out of the fridge, organized it by size, shape and color.  And while creative and funny it was the start of a downward spiral.  His brain and body start moving fast, he makes no sense and starts a very scary and upsetting 1-2 hour manic episode.  Last night he broke all the eggs on the floor, slammed his head on the wall, screamed at the top of his lungs while running and throwing all of his toys, and at the end peed all over the food that was on the table.  Then as if I turned off a switch in his brain he stops.  He crashes.  He cried and says "I so sorry Mommy" and places his head on my lap.  Then with the help of melatonin he sleeps.  This is every night.  It is exhausting and very concerning.  

Confession #2 Max had an MRI about a month ago.  Max has stress spots all over his brain.  As much as a 40-50 year old man.  He doesn't have seizures, but this is just a scary.  Your brain has natural stress spots, most disappear and heal.  Max shouldn't have many, he is 4.  But his brain goes 100 miles per hour until he eventually crashes.  He can't self regulate.  It is effecting his whole life. 

Confession #3 We are going to a psychologist next week.  We need some help and guidance.  While medication isn't the answer for everyone, and every child.  We have done everything in our power to help him.   We know there is a stigma about medications and being evaluated, but we need help.  We need to advocate for Max because he can't advocate for himself. 

Confession #4 Will and I are not super parents.  We are not stronger, wiser, more amazing, or better than any other parent.  We have two boys who need a lot of TLC, and any parent would do the same given the situation.  You would.  You could.  I am friends with a lot of parents in the special needs community and every one of them of course has days where they wish their child could have a "typical" childhood, but they wouldn't change their child.  Max and Dexter have made me a better person, not just a mother, but an overall person.  I am more accepting of others, I am more patient, I am a better teacher, wife and friend. 

These two boys have opened my eyes to the world of Autism.  And I am so proud to be a part of it.