My Mom and Max Run Together

Just the other day my dad commented, "The perfect Rust family day is a run in the morning and the rest of the day spent relaxing at the beach." Running literally (okay, metaphorically) runs in my veins. It is a part of my genetic make-up. It is my constant, my first love. My mother taught me this at an early age. I remember going to the 4th of July 10K Race at Washington Crossing State Park with my family.  It was a yearly tradition that my dad would run the mile fun run with Brandon and I, and then my parents would run the 10k together.  Running is something that defines us as a family.  The shores of New Jersey are one of our most favorite places on planet Earth. My very first race that I ever ran in High School was along the boardwalk at the Jersey Shore.  It was symbolic of the many years of running I had ahead.    

My mom passed away August 3rd, 2009 from Melanoma cancer.  Soon after, my family created The Light Up the Room Foundation.  Using Karen's story as a guide, the Light Up the Room Foundation provides support for abused children, victims of cancer, and cancer research.  Each year my family holds the Angels Run to raise money for the Light Up the Room Foundation.  

This year, in addition to raising money for this foundation my brother, Brandon will be raising money for his participation in the New York City Marathon.  He will be running on the Run for Autism Marathon Team as part of the Organization for Autism Research (OAR) in November.  

 "This is a cause that is dear to my heart as both of my nephews, Dexter and Max, are on the autism spectrum.  I have witnessed first-hand the transformation that both of my nephews have gone through when given the right type of support, and it truly is life changing."  -Brandon Rust.

OAR provides research and support for individuals and families with Autism, catering their care to match the needs of the individual--a must for any child along the spectrum.  To help support OAR and Brandon's marathon cause, please visit:

http://angelsshoptoo.org/epages/96e61832-98d2-478e-aeec-7036fe6333c4.sf/en_US/?ObjectPath=/Shops/96e61832-98d2-478e-aeec-7036fe6333c4/Categories/2

Additionally, the Angels Run 5k at Hopewell Vineyards is taking place on September 24th in Pennington, NJ. A portion of the proceeds from that day will go towards supporting Brandon’s marathon effort.  To register for the race, please visit:

https://www.raceit.com/Register/?event=37763

This year I am so excited to be traveling back East for the Angels Run.  In addition to my attendance, the Master of Ceremony, Max will be there!  It is going to be wonderful to see so many people who have not only supported my mom, but also to thank those who have supported Spaceship Max.  I am looking forward to an amazing trip and can't wait to see all of my friends and family at the Angels Run on September 24th.  

Thank you for the support!

Love,

Team Spaceship Max

Facebook Event Page:
https://www.facebook.com/events/142797492792104/?notif_t=plan_user_invited&notif_id=1468356101734285

Graduating from Giant Steps and Interviewing Max.

This last month has been full of a lot of emotions.  As a mom I have felt sadness, happiness, loneliness and pure joy as I have watched Max graduate from Giant Steps.
When he started Giant Steps Autism Preschool a year and a half ago I was scared.  The future was daunting.  I wanted so bad for Max just to look at me and say "I love you." 
With the help of amazing teachers, especially Amber, Max has grown and developed so much more than I could have ever foreseen 18 months ago.

Above picture:  Max's first day of Giant Steps November 2014.
Below picture:  Max and Mrs. Amber on Graduation day June 2016. 

Max still has a lot of growing and developing to do.  He is still socially and emotionally behind typical children his age.  He will receive speech therapy and occupational therapy (for his food and sensory issues) in kindergarten next year and for many years after. Max is working very hard on his reciprocal communication instead of just repeating what you asked him.
For example:
Mommy:  How are you doing Max?
Max:  How you doing Max?
Mommy:  How old are you Max?
Max:  How old Max?
*We are working on him actually answering these questions instead of simply repeating them.

I sat down next to Max while he was playing with his new pirate ship, garbage truck, and castle and also watching the iPad (Yes he does all of these at the same time) to ask him the following questions: 
*All answers are exactly what Max said (or what Max did) to answer each question.

1. What is something mommy always says to you? A toy mom!
2. What makes you happy? A happy! 
3. What makes you sad? I love the T-rex when sad
4. What makes you laugh? I love laugh
5. How old are you? Angry
6. How old is Mommy? You happy mom
7. How old is Daddy? Its good.  
8. What is your favorite thing to do? toys!
9. Who is your best friend?  Daddy
10. What do you want to be when you grow up? everything
11. What are you really good at? Happy
12. What are you not very good at? (head butts me in the arm)
13. What did you do today? a toy!
14. What is your favorite food? strawberries.
15. What is your favorite song? Charlie Brown (music from the Peanut movie)

16. What do you want for your birthday this year? I love presents!
17. What is your favorite animal? Ankylosaurus* 
18. What is love? I love the present ankylosaurus.  (He didn't get this dinosaur for his birthday, we failed as parents this year...)
19. What does daddy do for work? I love happy birthday!
20. Where do you live? big trunk
21. Where is your favorite place to go? I love the school the bus.  

I love my Max with all my heart.  He is the coolest.  He makes me such a proud mom.  And I can't wait for his kindergarten adventures next year. 


*If you are interested in knowing what an Ankylosaurus is click this link.
http://www.livescience.com/25222-ankylosaurus.html
And if you see one in the wild, please make sure to take a picture (or buy it) for Max, his parents will pay you back.   

What Does Autism SPECTRUM Mean Anyway?

Autism Spectrum Disorder (ASD) can be a difficult term to understand. It's the "spectrum" part that gets tricky.

Most people I've talked to are familiar with at least a few of the symptoms of ASD. They know someone with Autism or have read something online. Lots of people have run across something like this diagram on Facebook:

(Illustration Credit: I couldn't find one. Bummer.)

And that's great. I'm glad that people are getting the word out in easy to digest ways. But there's a problem with this diagram and a bunch of others just like it. It's absolute. It shows a kid with Autism and all the things that affect him. Only, I don't know a single autistic person that is affected by every single one of these things. It doesn't work like that.

Autism is a spectrum. There are lots of possible symptoms. Each person experiences different symptoms and to different degrees.  For Max and Dexter the diagram looks more like this:

And that's just a small portion of the symptoms. There are way too many to put into one diagram.

For me, the word "spectrum" evokes imagery from science class. The light spectrum is logical. From short wavelength to long wavelength, it's a linear progression.

(Source: eyelighting.com)

The Autism Spectrum is nothing like this. It's not a progression of "less autistic" to "very autistic." I'll let this excellent comic by Rebecca Burgess explain it: UNDERSTANDING THE SPECTRUM. 

-Will (dad on the spaceship)

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...

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.  

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.