Monday, July 28, 2014

Look but don't touch

My Dad has been in town from New Jersey for the past five days.  It has been really great to have him around.  The last time he saw Max was back at Easter.  Max's Autism diagnosis was still fresh at Easter time and we were still debating on pre-school, therapy and other interventions for Max.  Since then we have made a lot of changes to our daily life, and my Dad noticed.  My Dad said Max is more relaxed and is trying to communicate a lot more.  Something we have been doing a lot of is using Facetime.  I truly believe this has helped Max get to know family that is far away better.  It only took a few hours to warm up to my dad instead of a day or two.  By the end of my Dad's visit Max was giving him hugs. 

While my Dad was here we did a lot of fun activities, but the one I was most excited and also nervous about was the Alpine Coasters in Park City.  Cousin Michael was in town so he also came along for the fun.  We drove up to park city, bought the tickets and waited in line.  Max did great in line.  It was a miracle, because the line was over 45 minutes long.  He played with dirt most of the time and was very well behavied.  When we were a couple people away from the start of the coasters my Dad took him in his arms for a closer look.  The coasters are on a track, they look like cars, and they looked to be perfect for Max.  He was excited, he kept pointing and saying car.  He even identified that he wanted the "bu" (blue) one!  As soon as it was our turn to get on the ride, Max wanted nothing to do with it.  He yelled and squirmed all over Will's lap. 

We tried.  We didn't get mad.  We were glad he was so good in line.  Will, Michael, and my Dad still went on the coaster.  Max, Dexter and I watched as they took off. 

Max really has made leaps and strides these last 9 months.  He truly is growing (literally) and learning.  things take time.  The LITTLE steps are HUGE in his world.  

Wednesday, July 16, 2014


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

Wednesday, July 9, 2014

A wonderful story - Book recommendation

Will and I just started listening to the book Life Animated and so far it has been an emotional journey for both of us.
Will and I get suggested books to read ALL THE TIME.  And to be honest we just don't have the chance to sit down and read a book.  That would be nice, maybe one day...
But we are in the car a lot, and Will loves audiobooks. 

Here is a summary of the book:
Here’s how this survival story begins. Just shy of his third birthday, a seemingly typical, chatty child became mute. He suddenly didn’t sleep or eat, and cried inconsolably. His only solace: the Disney animated movies he loved before the autism struck. But they had changed, too—they’d become gibberish, because the boy’s ability to understand speech had also vanished. So he memorized them, dozens of them, based on sound alone. What follows are a series of startling breakthroughs, as, for years, the family began to communicate with their lost son in movie dialogue. Recite one line, he’d look you in the eye and recite the next. But was he understanding?

Will and I both have cried in multiple spots.  We have held hands and looked at each other without saying anything, but just understanding each others feelings.  Max is this child.  Max has the same issues.  There are other families just like ours.
Max does the same thing the little boy in the book does.  He memorizes movies.  He recites the lines and talks to the characters.  But when you ask Max about the characters or about a movie scene he won't respond or repeat lines from the movie, he only does this when the movie is playing.  He goes into another world when he watches Winnie the Pooh, Mickey Mouse, Elmo, Perry the Platypus, and Wall-e.  He understands them, and for a split moment he is a typical child, responding, being social, and even repeating words.  But as soon as the show is over the moment is gone.  I am glad Max has characters in his life to connect with.  I am glad there is something that he can communicate with. 
And Will and I feel lucky to have Max and his movies in our life.

Another summary of the book:
In fact, their young son had invented a language to express love and loss, the bonds between brothers, the nature of beauty, and the true meaning of the words “happily ever after.”
At its core, this brilliantly crafted narrative—written by the father, but shaped by his wife and children—isn’t about autism or Disney, though you’ll never view either one quite the same, again. It’s the story of a family’s resilience when their world is turned upside down. It’s about perseverance and hope.
A child disappeared into confusion, frustration, and silence. But deep inside his dark cave of isolation, he and his family began to dig for diamonds, working year by year, trial by trial, on a most improbable project: to find a way each of us can learn to animate our lives.
Will and I have been looking back at pictures of Max, and we have been talking about things we now notice as "not typical" or "on the spectrum."  I even think in some pictures Max is honestly trying to tell us something isn't right.  I feel so lucky that Will and I both listened to the spirit and started seeking out help for Max.  Max is learning in his own way, through movies, tv shows, and books.  He has friends who are very real to him.  He has his own "Winnie the Pooh" who he talks to and communicates with.  His friends might not be people, and socially he might be far behind other typical boys his age, but he is learning and progressing.  Will and I notice a difference in our family, and it isn't Max who has made a huge change, it is us.  We are allowing Max to be himself, we are allowing him to stay in his world.  Max is slowly entering our world, but we needed to jump into his first. 

I am looking forward to listening to the rest of the book with Will. 

Saturday, July 5, 2014

The 4th of July

Will and I are still learning.  Every new activity and adventure we have as a family is a learning experience with Max.  The Fourth of July was nothing different, there were very good moments and then some that we wished we approached differently. 

What went REALLY well:
Max loved the parade.  Especially the fire trucks.  He would jump up and down, wave, yell and scream, and was the happiest kid at the parade.  It was very fun! 
At one point the "Wells Fargo" horses passed and Max said "hi cows" but then cheered the LOUDEST for the poop truck that was following the horses.  I am pretty sure he was the only kid cheering for the poop. 

After the parade instead of trying to go swimming and packing the day with tons of 4th of July activities, we came home.  We let him play with trucks inside and we watched the Lego Movie while Max jumped on the trampoline.  It was perfect, and something he was comfortable with. 

What went WRONG:
We took Max to a night time party at our good friends house.  They live in a great neighborhood and have a party to celebrate the Fourth each year that is called the "Cul-da-sac of Fire"!  There is music, lots of people, fireworks and food.  Everything was going great, we brought Max trucks to play with and food for him to eat.  Then it started to get dark and the fireworks started.  They were popping all over Provo.  He was hearing every sound from all over the Valley.  And because his hearing is very sensitive it started to really overwhelm him.  He started crying and hitting his head with his hands, and pulling his ears.  He hated all of the random noises and was making it known.  He cried a lot even when inside where the fireworks were quiet. 

So even though he has made strides, there are a lot of things that we still need to be cautious of.  Loud noises that he isn't expecting is one of them.  I am grateful to our friends the Merrill's and McGuire's who understood what was going on and went out of their way to help us, it means a lot.  We know there is going to be a lot of situations that Max isn't going to be able to handle, but we are lucky for the situations he handles with ease.