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.

Learning from Dexter

Max and his younger brother Dexter have a very sweet relationship.  They truly love each other.  Dexter is the first person Max says hi to and gives hugs to after school.  Dexter loves to give Max hugs and kisses.  It is pretty adorable.

One thing I never thought was how much Dexter will teach and influence Max.  Dexter and Max are physically very different.  Max is huge and has always been in the 100% or above on all his growth charts.  Dexter has been between 1% and 20% on all his growth charts since birth. 
At 10 months Max weighed 30 pounds and was 30 inches.  Dexter is only 23.5 pounds and 31 but he is 21 months.  So they are very opposite.

 Both boys at 10 months old.  #thebros

Dexter can't fit into the outfit Max is wearing yet.  Ha!

Max and Dexter developmentally are very close in age.  Max is about 2 years behind peers (typical children) that are his age.  Dexter has a slight speech delay, but he is getting some early intervention help.  So they are able to really influence each other. 

Today we got the dreaded call at school.  Max bit another student.  He has never bit someone before.  I was hoping to avoid this.  But, alas, he bit someone.  My heart sank.  Max is such a tender heart.  He cares a lot about others, and is always saying "That ok mom" when I bump into something or get hurt somehow.  So now what?  Where is he learning this from?  Yes, it was the first time, but he never has done it before?  His teacher asked me if Dexter bites.  I said yes, he is teething, he bites everything.  She said, he is watching Dexter.  He is testing out what Dexter is doing.  Ah!  That makes sense.

I can work with this.  He is influenced so much by those around him, and doesn't understand facial expressions well at all, so we really need to talk to him and repeat things over and over for him to grasp a concept.  For example Max used to throw all of his trucks and cars in the sink.  This was such a hard stage.  Because everything would go int the sink.  And he would get SO mad when we would clean it up.  We realized that he was "cleaning" and we were just not seeing his perspective.  When we had dirty dishes we would put them in the sink.  When he was done playing with a car, he would want to "clean up" and put it in the sink.  So in his mind, nothing was wrong.  He was learning a social situation.  We worked with him and showed him over and over what goes in the sink, and about 4-6 months later Max doesn't put all toys in the sink now.  It just took time.

Looking back on a lot of situations I can see how he was being so literal.  Because that is how he views the world.  At this years Easter egg hunt we told him to "Pick up all the eggs" and he did a great job.  But when he came across an egg that was shaped like a basketball, he looked at it and said 'Not an egg!" and threw it to the ground.  Literal thinking.

 

Dexter will continue to teach Max.  He will show him the world better than we can.  I love that I have two boys close in age so they can help each other.  Dexter adores Max, and Max depends on Dexter.  It is a bond that will grow.  I love them to pieces.  

My shy boy and my camera happy boy.  This picture explains them so well. 

The Chase

Max has been playing more and more people games.  Just this past month he has learned that chasing is really fun.  He used to just stand and watch others chase, look and go back to his own world, or would only run away.  Now he comes back and is the chaser. He is participating in the chase.  Dexter and Max LOVE this game, and of course play it any chance they get. They love playing around the couch.  Max has been loving having his Cousin Charley so close because she is also happy to play "The Chase" with him too.  Charley says "I'm going to get you" and Max now repeats it and says "Get you!"

It has been really fun to watch Max learn these last few months.  He is picking up on more social ques and becoming more confident in social settings.  Nursery at church is still hard, and he does things that make the other kids ask things like "what is he doing?"  Or "Why does he do that?"  But he is progressing.  And my doctor has always told me that progress is progress no matter how big or small. 

My fears for Max

Max starts pre-school in a few weeks.  I am really excited for him to start a new phase in life, but I also have so many fears.  I have been laying awake at night thinking about not just preschool but elementary school and high school.  I have reservations about sending Max to school, but I know in my heart this is the right thing for him and for our family. 

I am going back to work part time starting this week.  I am going to be teaching 6th grade math at Walden School in Provo.  I am excited.  I love teaching.  But there is part of me that worries about leaving the boys, especially Max.  Will is going to be home with both boys.  Max goes to pre-school two times a week at first, then most likely will switch to three days.  He will be at school in the morning. 

Why do I lay up at night?  Why do I worry?

I hate the term "getting better" because he isn't sick.  He doesn't have a cold, or the flu.  He has Autism.  He improves.  He learns.  He grows.  He has set backs.  He is going to have difficult things to deal with in his life.  Especially socially.  I worry about those things.  I have fears.  

My fears are simple fears. But real to me. 
1.  Will Max make friends.  Real friends.  Not just friends who "deal" with him or are forced to be nice to him.  But friends that will love him and his quirks.  Friends that will understand and accept him for the special boy he is.  Friends that will come over and watch Disney movies and won't care if he has all the lines memorized and all the actions in sync. 
2.  Is he going to be able to leave Will.  Max is so attached to his Dad.  They are best friends.  They get each other.  Will understands Max more than anyone.  And Max uses will for comfort, friendship and making the connection between his own world and the world we live in. 

 3.  Bullying.  Teasing.  And being unkind.  I think I worry about this the most.  I have already seen other kids laugh at him and make fun of him.  I have seen kids laugh at the way he "talks" and mumbles, the way he tantrums and the way he plays with trucks.  I notice.  I hope that Max will learn to stand up for himself, or have a group of friends that will stand up for him. 

The other day we were at the mall.  Max was having a total meltdown in front of The Gap.  I am used to other parents looking, staring and giving me the stink eye.  I laugh at it now, but it used to really bug me.  Sometimes I want to scream and say "so your child is perfect and has never had a tantrum in public, wow, you are blessed!"  But I don't.  I keep calm and concentrate on my son.  But this particular day there were kids sitting on a bench watching him, and laughing.  It broke my heart.  Max looks older, at least 4 or 5.  He shouldn't be acting like this.  But he is 3 and Autistic.  So this is what we deal with. 

4.  I fear that his brother is going to resent him.  I fear that he is going to be embarrassed by him.  I look forward to the day where Will and I get to talk to Dexter about Max.  Explain to him how Max's mind works.  Explain that he needs to be loved and accepted. 

 5.  He is going to be labeled at school as a "problem" or a kid that "has issues."  Trust me.  I am a teacher.  I know these things happen.  I pray that he has teachers throughout school that love him and accept him.  I try to be this teacher in my own classroom.

Max still has hard days.  When people see him, they usually see him in his element or at a good moment.  But when our condo door closes and he has a meltdown, a panic attack, or stays up until 3 or 4 am that is reality.  That is what we deal with.  It is hard to explain to people "Yes he is doing well, he is learning new things, he is saying more words."  When the night before was hard.  When he hit his head so hard on the wall that he has a bruise. 

 Fears.  These are also real.  

Brothers

I can't believe that Dexter (Max's baby brother) is almost a year old.  A lot has happened in his first year of life.  Dexter is very different than Max, and on most days Will and I find ourselves saying "We are learning how to be parents all over again!"
I am sure we aren't the only parents saying this with their children.  I think back to my own childhood, and how different my brother and I were as kids.  We had similar interests but approached life in very different ways.  Still do.  Which is good, we kept my parents on their toes.

Brandon and Tiffany Rust circa 1985

Dexter is very much his own person and has his own challenges, but developmentally he is right on target with peers in his age group.  At a year is when we really noticed things were changing with Max.  He started regressing developmentally instead of improving.  He started loosing words, loosing interest in food, going into his own world more and more.  We have not seen this with Dexter.  If anything he is more engaging, notices people a lot more, and wants to be the life of the party.

Dexter loves when we get down on the floor and play with him.  He likes to interact with us, and even grabs our hands to "help" him with a toy.  He looks us in the eye and wants to get approval from us by clapping or saying "yes Dexter!"  He is very different than Max was at a year.  Dexter also lets us know very clearly when he is hungry.  He loves solid food and has become quite the puppy picking things off the floor.  Dexter also changes activities about every 5-15 minutes.  He is very busy, moving from toy to toy, activity to activity.  Max could watch a whole movie at a year old, could play and line up cars for 45-60 minutes, or could just sit in the kitchen and watch me cook.  He has always been in his own world.  

We love face-time.  It gives us the opportunity to communicate with my family in New Jersey and New York while being in Utah.  Dexter loves the phone, enjoys seeing my Dad and smiles and copies what my Dad does on the phone.  Max has a harder time with the phone, he doesn't really respond to his name and unless his gets to press the button to end the call he won't interact with my Dad and Brother.  I am blessed that my Dad and Brother understand Max, and love him unconditionally because it is hard to watch Max not respond to "hello Max, how are you Max, what are you doing Max?" 

Face-time with Poppi

Max has just started interacting with Dexter.  He calls Dexter THE B, or MY B.  He gets very concerned when THE B is crying, or when THE B is playing with his trucks.  They recently started chasing each other.  Max doesn't understand that Dexter just wants to play with him, so instead it turns into Dexter chasing Max and both boys laughing and laughing.  It is really fun to watch.

Will recently told me a story.  It was when Max came to the hospital to see Dexter for the first time. Will was with Dexter in the nursery and I was with Max.  Will said to Dexter "It is time to go meet your brother."  Dexter smiled.  He was hours old.  I believe Dexter was excited to see his brother and become his buddy, his friend.  Dexter is teaching Max.  Dexter is a great little-big brother.  I am lucky to have two special boys in my life. 

The Bros - August 2013