Friday, August 22, 2014

Talking isn't a requirement

Max might not talk much, but boy there is a lot going on in his mind. 
He is very smart.  
He can mimic with the best of them. 
He has the coolest gibberish, and tell us a lot of stories.  We don't understand anything he is saying, but his inflections are spot on. 
If he is in a room of adults and they are all talking and using their hands, he will stand right in the middle and mimic their motions.
He loves to memorize movies.  He memorizes the actions in the movies, and has been doing this since about a year old.  Currently we are very obsessed with Wall-e.  In this clip Wall-e is doing his "job."  He makes trash cubes.  Max will run over to all his toys, collect them in his shirt and then dump them out.  He mimics.  It is his favorite thing to do.
video
He also memorizes songs.  The beat especially.  He knows all his A-B-C's and can count to 10 without skipping a beat.  They are a formula.  He memorized them.  He doesn't realize they make words, but it is a system. 

He also knows that there are certain formulas in life. For example when we leave somewhere he says "Bye pool" or "Bye Trucks" or "Bye bikes" or "Bye car" because he knows we are leaving.  And he now understands people say "bye" to indicate they are leaving. He is VERY diliberate.  He is black and white, no gray area at all. 
video

He is very happy or very sad, there is nothing in between.
We are figuring him out.  And I love learning about Max. 
Trucks.  His happy place. His favorite part of life.  When my brother was visiting he said "I don't know if anything makes me THAT happy."  And he is right.  Max is over the moon happy about Trucks.  And it shows.  He is just awesome!
His facial expressions are his way of talking.  And you are see the joy in his face when he sees a truck on the freeway or when the school bus passes our condo.  He doesn't need words, we understand. 

Thursday, August 21, 2014

Gratitude

I would like to thank you all so much for the outpouring love for Max and our family.  It has been astounding to read emails, messages, texts, and receive phone calls from friends and family.
Last week I posted on facebook this message: 

The post got the most "likes" I have ever had.  I didn't even realize I had that many friends on facebook who care about my little life.  Thank you for those who have shared Spaceship Max with others.  Thank you for those who read the posts. 

This blog has been so theraputic for me.  It has given me a place to write my feelings and show the good, the bad, and the in-between of having a child who is Autistic.  I hope that I am able to help others.  I hope that I am able to teach others about the Autistic Spectrum.

Thank you all from the bottom of my heart.
I can't wait to continue to write about Max and all of his Space Adventures.  



Sunday, August 17, 2014

The Good Day

Max had a great day yesterday. 
A day of no tantrums is ALWAYS a good day.
Nothing huge happened.  It was just a good day.
He called me "Mommy" for the first time.  That was amazing.  He looked at me and said "Mommy!"  We hugged and he knew he did something very good.  
He woke up after a solid night of sleep.  We are still giving him melatonin each night, but that 1mg has changed our sleep and our life. 
He loves his new sand box, and asks to play outside multiple times during the day.  He is in his happy place.  He zones out.  He talks to himself in his own language.  It sounds a little bit like the language from Lord of the Rings.  He is so happy. 

We went to Costco.  There were no melt downs, no tantrum in the middle of isle 3, and he stayed by the cart the whole time.  In the checkout lane he pointed to Will and Said "Dad", and then looked at me and said "Mom" and then pointed at Dexter and said "the B!"  He likes to say "the B"!

We went to our neighborhood party and Max showed everyone his belly, touched a girls shirt that had flowers on it,  and spun in circles for almost an hour.  As he grows he gets more clumsy.  He trips over his feet and falls all the time.  He didn't interact with other kids who were playing but he did run around, smile, giggle and even ate some chips.  Chips are his new found food of choice. 

Max was happy.  He was himself.  His special self. 
These days make me realize how happy Max is.  How the smallest things are huge for him.  How going for a drive and pointing out every single MACK truck we pass is the best part of his day.




Sunday, August 10, 2014

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.  



Friday, August 1, 2014

Are we enough?

Will and I talk a lot about Max.  We talk about new ideas we have to make his (and our) life easier, to make his tantrums less, to allow him to enter our world for a bit, and to grow as an individual.
I know all parents have hopes and dreams for their children and who am I to say that our feelings are not similar to other parents.  But I do know being Max's parent is a challenge. There are some days I feel like the worst mom on the planet, and I question my ability to raise such a special child.
I know I am not alone, I know every parent at one time or another has feelings of guilt, feelings of inadequacy or feels like the lack the ability to be a good parent.

When Max was around two Will and I decided that we would start a time-out routine with him if he did something wrong.  We would do the "Super Nanny" approach.  We established mini rules, would tell him no, explain in a very simple way why he couldn't do what he was doing, and then if that didn't work, he would go sit in time-out.  We started out with 30 seconds and we would sit with him.  Then after we would talk to him and tell him we love him.
His favorite activity at the time (and still a favorite) is to throw things.  Clear across the room.  Breaking things, hitting people, and being destructive.  When he does these things it was an automatic time out.  We would put him in time out over and over - sometimes up to 30 times.  Consistency is the key, right? Wrong.  With Max timeouts made everything worse.  He would tantrum the whole time, would kick, hit, scream, hurt himself, and in the end would still throw things.  He wasn't understanding.  He couldn't read our mad voices, he didn't understand our faces, he wasn't picking up on the social cue of "Mad" and it was SO FRUSTRATINGIt is still frustrating

Will and I are not perfect.  We yell, and we get mad.  We make mistakes.  But we are trying our best.  We have bad days.

It is hard to listen to people tell us "Oh you are doing so well with Max!" Because on most days he is a challenge.  And we don't feel like we are the right parents for the job.  We are trying not to make excuses for Max.  We want him to learn what is right and wrong, what is socially acceptable behavior and what isn't.  But it is so hard. 
But...then there are days when ONE thing makes it all worth it.  Like when he said "Thank you!" in Costco in the correct context.  Or when he comes and snuggles up to me and we watch a show together, or when he makes his brother laugh and laugh.

Are we enough?  I don't know.  But I do know I have so much love for Max.  And I know he loves me.  Even if he doesn't say it.