Thursday, April 28, 2016

A small adjustment with huge results.

When something clicks it is the happiest of happiest. 
Max started his new medication about 6 weeks ago.  It took us 4 weeks to notice a difference.  It took us all 6 weeks to realize how something so small could help in a big way. 
Max hasn't been manic at night.  He is on a mood stabilizer so we were hoping the manic behaviors would calm down, and they did!  He is happier at school.  He has been moving through his programs with greater ease.  The biggest thing we have noticed is that his anxiety has decreased.  We are getting really positive feedback at school from his teachers, and it makes me so happy. 
Max has started really loving being surrounded by anything.  Tight, small spaces are his favorite.  This picture is at school. 
"He was very happy."
"Max did great at focusing!" 
 Max still has all his quirks and still has hard days, but they are not for hours upon hours all day every day.  The other night BOTH boys were asleep at 10pm and Will and I found ourselves able to watch Flip or Flop without interruption!  It was amazing. 

Will and I realize medication isn't for everyone.  But we needed to help Max.  And for us this has been an answer to a lot of prayers. 

Now if we could only convince Dexter to sleep in longer stretches things would be pretty perfect. 

If only...

Saturday, April 9, 2016

Just let Max be Max

Today we took Max to the shark feeding at the aquarium and he loved it.  He is OBSESSED with sharks and dinosaurs at the moment. Max isn't the best in crowded situations. He yells, he says things over and over, he flaps and spins. Usually we try to stop him. Today Will and I didn't tell him to stop, or to calm down, or hold his flapping arms. He is his own kid. He doesn't realize he does these things, or when he does "stim" or repeat things it is because he is happy or sad. And today he was happy, so why should I stop him? I know socially it isn't "typical" or "acceptable" but he doesn't care. Why should I?

Today we got every bad look, fake smiles, mean glares, and one guy even asked will to "quiet him down." I wish this didn't happen, but I was prepared for it.  I smiled back, or just ignored their rude behaviors.  This was a day for Max and his sharks. And also a good day for me to realize that I need to let him just be him. I need to let go of my own insecurities.  

Monday, April 4, 2016

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.