Uncle Brandon's Unconditional Love

I am the proud sister to Brandon Thomas Rust.  Not a day passes by that I am not reminded how lucky I am to have a brother like Brandon. 

Brandon is 3 years 9 months younger than me.  When he was born I immediately loved him.  I still remember vividly going to the hospital to meet B for the first time. 

Growing up Brandon excelled in athletics and academics and I was so proud.  I loved being Brandon's sister.  Brandon had a special relationship with my Mom, and growing up I would dream of the day I would have a son that looked at me the way my Brother looked at her. 

My brother would come to all of my cross country and track races in high school.  I loved knowing that he was there cheering me on.  And I know he was my secret weapon to having a fast kick at the end of many important races. 

When Max was diagnosed with Autism at age 2.5 nothing changed, Brandon was supportive.    Anytime I call with new information about Max he always asks "what can I do, and are you okay?"

Then 2 years later when I made the call to Brandon to tell him that Dexter was also Autistic, he again wasn't phased, but was supportive and concerned with how he could help.  My Brother is a lot like my mom, he loves deeply, and cares about his friends and family with all his soul.  And his special needs nephews are no different he just loves them. 

I have never been able to run a marathon.  It was always a dream of mine, but in 2003 I had major reconstructive foot surgery.  I now have only 75% mobility in my left foot, and have to be very cautious not to hurt it again.  Running was such a huge part of my life, and to have it end so abruptly hurt my soul.  When my Mom passed away running really felt so distant.  Running bonded my mother and I.  It was where we had our deepest conversations and most memorable experiences.  The loss of running and my mom left me feeling very empty. 

Then my brother started running, and in November 2009 he ran his first Marathon in memory of my Mom.  Running came back into my life with a new light.  Brandon might be running for my Mom every November, but he is also running for me.  

The Angels Run is in memory of my Mom, Karen Rust, but also helps my Brother raise money for the NYC Marathon in November.  And this year Brandon is running for Autism. 

To support Brandon's marathon efforts please click the link below:
http://lightuptheroomfoundation.org/angels-sponsor-here/

To be a part of the Angels Run please click the link below:
http://lightuptheroomfoundation.org/angels-run/

**And please feel free to share this blog post with friends and family. 

So much love to you and yours. 
Tiffany Strong

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.