Dinosaur Karen

My Mom passed away from melanoma cancer in 2009.  My mom, Karen Rust, would have been a fantastic grandma.  She would have been Max and Dexter's biggest fan.  I can picture her running in all of the Autism Speaks Races, and wearing blue the whole month of April.  She might not be here on earth, but I know she is watching out for our family.

The one thing that has always been hard for me was not having my mom physically around for the birth of Max and Dexter.  Max was born two years after my mom passed away.  There are things I wish I could have asked her about being pregnant, about caring for my body after birth, about caring for newborns, and just having the time with my mom surrounding the birth of my boys.  I know she was there in spirit, and I know she gave me a lot of strength, but there is something about being physically there. 

Max lives in a world of dinosaurs.  He believes dinosaurs are alive.  Max is a dinosaur and wants to protect and love all the dinosaurs.  Dinosaur world is where he goes when he is overwhelmed with the real world, it is his safe place. It is hard to get him to leave dinosaur world.  A few months ago he started talking about a dinosaur named Chomp.  Chomp the dinosaur would come back daily and Max would incorporate him into his dinosaur world.  Soon after Chomp another dinosaur came along and this dinosaur had the name Karen.  At first I thought it was a funny coincidence.  But honestly we have never said "Grandma Karen" to Max.  When talking about my mom we either say "Grandma" (which if you knew my mom you know she would have hated being known as a grandma) or "Mommy's Mom".  
Karen soon became a regular in Max's dinosaur world.  He would talk to Karen, tell us about Karen, and remind us that Karen was in the room.  Karen would come up more and more especially when Max was upset, he would call for Karen and tell Karen what was making him scared.

I picture my Mom in heaven with her big smile (also laughing) because her grandson had turned her into a dinosaur.  A large, dirty, loud dinosaur.  She is loving it!  And Karen is here to stay.  Max talks about her daily.  We have asked Max where Karen came from, and he just says "It Karen!"

Just now I asked Max the following:

Me:  Tell me about Karen.

Max:  I love Karen.

I do too Max.  I do too.

So as cheesy as this sounds, my mom is here, she is a dinosaur.  She is protecting Max from the scary real world.  She protects him from the loud sounds, the bright colors, and the confusion of daily life.  Karen the dinosaur is pretty amazing.  And I love her.

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

It take a Village

There are some days I sit and cry.  I cry with frustration, with tiredness, with negative thoughts that I can't be the mom my boys need.  And every single time I have had a moment, or even a full day like this I have had a friend or family member reach out to me and offer to help, or just talk, or even just take a drive around the block.  (Sodalicious has become a major stress relief in my life.) I can't tell you how grateful I am for these moments, and for the village Will and I have formed to help raise our two special boys. 

People often ask "What can we do to help?"  or "Do you and Will need anything?" 
We don't know how to answer this.  Our personalities are not one who ask for help.  We like to serve.  We like to help and be helpful to others.  So asking for help is hard.  But we are learning. 

There are not many people who can watch Max and Dexter.  They are hard boys and I totally understand make people nervous.  Dexter is so anxious to be without Will or myself and will cry for hours.  Max can bolt at a moments notice, and honestly that scares me.  Then Max and Dexter both have sensory issues with food.  So we tend to do everything as a family.  We go everywhere together and travel as a pack.  It is just easier. 

There have been so many people who have helped us.  So many people who have come to our rescue and have made our lives easier.  The emails of support, the texts on hard days, and the middle of the phone calls mean the world to us.  Will and I feel so lucky to have such a huge village.  It is the stranger in the food store who helps me when both of the boys are melting down in the busy parking lot.  Then there are the group of BYU boys who live across the street from us who have on multiple occassions cleaned up our outside toys and have saved Max when he has run into the street.  These acts of kindness make me have so much faith in humanity. 

This past weekend we took part in The Utah Walk for Autism Speaks.  We created a team for Spaceship Max.  We didn't have any expectations for the walk and we really just wanted to go and be a part of the Autism Speaks event.  I was blown away by the support we had.  We had many who supported us by donating to our team and then we had a great group of friends who came and walked with us.  The event was loud, which for an Autism event was strange, but all and all it was a great morning!  Our family is blessed with so much support.

I love my family!  

Super hero dad

Walk Now For Autism Speaks - UTAH

This year our family is walking in the Walk Now for Autism Speaks - Utah Chapter.  Autism Speaks is a world wide charity organization.  We are really excited to give back to such a wonderful community.  We know first hand how beneficial being a part of a community of support means to a special needs family. 

If you would like to walk or donate to our team click on the link below. 
We would love to have a great turnout to support SPACESHIP MAX!! 
The walk is:

 SEPTEMBER 12th, 2015 

Sandy, Utah

South Towne Expo Center 9575 South State Street Sandy, UT 84070 - See more at: http://www.walknowforautismspeaks.org/faf/help/helpEventInfo.asp?ievent=1137386&lis=1&kntae1137386=CA431B1F9BAE4AA488E00F44CA7B808E#sthash.RdtjqmXs.dpuf

Sou

South Towne Expo Center 9575 South State Street Sandy, UT 84070 - See more at: http://www.walknowforautismspeaks.org/faf/help/helpEventInfo.asp?ievent=1137386&lis=1&kntae1137386=CA431B1F9BAE4AA488E00F44CA7B808E#sthash.RdtjqmXs.dpuf

South Towne Expo Center 

Here is the link to become a part of Team Spaceship Max:

South Towne Expo Center 9575 South State Street Sandy, UT 84070 - See more at: http://www.walknowforautismspeaks.org/faf/help/helpEventInfo.asp?ievent=1137386&lis=1&kntae1137386=CA431B1F9BAE4AA488E00F44CA7B808E#sthash.RdtjqmXs.dpuf

South Towne Expo Center 9575 South State Street Sandy, UT 84070 - See more at: http://www.walknowforautismspeaks.org/faf/help/helpEventInfo.asp?ievent=1137386&lis=1&kntae1137386=CA431B1F9BAE4AA488E00F44CA7B808E#sthash.RdtjqmXs.dpuf

http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=1137386&lis=1&kntae1137386=CA431B1F9BAE4AA488E00F44CA7B808E&supId=0&team=6429013&cj=Y

Anxiety and Therapy Animals

I am an overly anxious person.  I am not afraid to admit that I take medication for my anxiety and have for years.  It helps me sleep and be a happier person overall. 

I never realized how anxiety can effect a child.  Especially when a child can't vocalize what they are feeling.  Max's anxiety has gone up a lot in the last six months.  It is effecting his school performance, and also how he reacts at home.  Autism and anxiety actually go hand in hand, so does ADHD, ADD, and Sensory Processing Disorder.  This is not saying that if you have one you have them all, it is just common that with Autism another side effect could be one of them. 

I love how it is explained in this article from Autism Speaks:
Children with autism express anxiety or nervousness in many of the same ways as typically developing children do. We often see separation anxiety, for example, when children must part with trusted parents or caregivers to go to school or camp. Many children worry and become preoccupied with challenges such as homework, friends or health issues. These issues commonly affect both children with and without autism. However, social anxiety – or a fear of new people and social situations – is especially common among kids with autism.
If your child suffers from anxiety, he may experience strong internal sensations of tension. This can include a racing heart, muscular tensions, sweating and stomachache. Intense anxiety can result in repetitive behaviors that appear to serve no function, such as shredding paper or clothing.
Of course individuals with ASD often have trouble communicating verbally. So outward manifestations of anxiety may be the only clue that something is bothering them. Some researchers also suspect that outward, physical symptoms of anxiety may be especially prominent among those with ASD.

I do a lot of research daily and read as much as I can about Autism.  It is fascinating to me.  I know as a mother and also a teacher it really helps me to be informed and to learn as much as I can so that I can best care for my child.  A few months ago Autism Speaks had a article about how animals help with Autism and Anxiety.  (This is the original article I read via Huffington Post) I talked to Will about the idea of getting a pet for Max.  We have fish, and to be honest, they are boring.  Max hasn't bonded over them.  He has put things in the fish tank a few times to "share" but they don't really do anything for his anxiety.  I started looking into a kitten.  I wanted something that was for Max, that we could help him learn with, that he could help care for, and could be an instant friend.  Therapy animals also help with social skills and making friends. 
I read a lot about therapy animals, specifically cats, talked to other mom's about animals and having a therapy animal in our condo, and felt so good about it.  Will and I talked to Will's parents, and they agreed that it would be okay for us to have a kitten for Max. 

Three weeks ago one of our friends posted on facebook that they just had a new litter of kittens.  It was perfect timing.  And I fell in love with a white and gray kitty they posted a picture of!  Will and I set up a time to come look at the kittens, and the very next day we brought home our kitty home.

Introducing:  The Magnificent Marvelous Mad Madam Mim.  We call her Mim for short. She is named after one of our favorite villains in Sword in the Stone. 

She is so tiny, has the cutest little nose and little kitten meow.  She is very loved.  Max adores her and has since she was introduced to him. 

The first night she was with us she snuggled up to Max and went to sleep next to him. 

When Max gets up in the morning Mim is the first person he looks for, when he gets home from school Mim is the only thing he cares about, and at school his teacher told us all week Mim has been a very popular topic of conversation.  He calls her "My kitty Mim" and I am really excited to see how much she helps our whole family. 

 He has even shared Gerald with her.  That means it is true love. 

Other interesting articles about Therapy animals not only for Autism for specifically for Anxiety:
http://anxietyfreechild.com/animal-assisted-therapy-can-help-kids-with-anxiety-depression/

http://www.anxietysupportnetwork.com/articles/how_pets_are_powerful_anxiety_reducers.php

http://www.nlm.nih.gov/medlineplus/news/fullstory_152699.html

Autism Awareness: What have I learned in the past year?

Last April 2, 2014 Autism was so new to me.  It was very fresh. I was so lost and confused.  I was heartbroken and very worried about Max's future.  Will and I had little knowledge about Autism and we didn't know how to help our son.  I have over the years as a teacher taught some students on the Autistic Spectrum, but I had never thought about having a child of my own with special needs.  And honestly who does?  How can you prepare for that?

Christmas 2013 - Max was official diagnosed January 2014.

Fast forward a year.  I am still learning everyday.  I want to continue to learn as Max grows and enters different stages of life.  One thing is certain I am more confident as a Autism Mom.  I am not angry or upset, but have the deepest joy and love for Max.  He is amazing just the way he is.  He has led us into his world, and I am so lucky he has.

10 things I have learned in the last year in not particular order:

1.  You have to take suggestions of how to "treat" a child with Autism just like that - a suggestion.  We have been approached by so many people telling us about the latest treatments: Natural oils that cure Autism, do not vaccinate, not allowing him to drink cows milk, taking red dye out of his diet completely, etc.  Some suggestions have been wonderful and we are grateful for them. But we don't use all suggestions because we have to do what we feel is best for our child. 

2.  Vaccinations do NOT cause autism.  It has been proven over and over again.  Then end.

3.  Early intervention is KEY.  I have said this so many times but if you notice something doesn't seem right developmentally with your child or you have a gut feeling that your child isn't thriving socially talk to your pediatrician.  Early intervention can start as early as 18 months.

4.  Find a support group.  I don't know what I would do without friend and family, but sometimes you just need to talk to someone who has a child that is dealing with the same issues your child is.  I love being a part of the Giant Steps community.  I love being able to connect with other Moms to share stories, ask questions, and get advice.

Max's first day at Giant Steps November 2014

5.  Take time for yourself.  Everyone needs a break.  Everyone needs time to be alone and not be in charge.  I go to the gym, I zone out on my ipod, and I watch bad television.  But it helps.

6.  Be honest with your feelings.  There are really tough days.  There are days where Max has had tantrum after tantrum that last anywhere from 5 minutes to 45, didn't sleep the night before, has only had chocolate milk to drink all day, and won't put on anything but a diaper.  Oh and to top it off has watched the same Thomas the Train Episode on repeat.  This is a frustrating day.  And it is okay to be frustrated.  It is okay to cry, to be mad, and upset.  Validate your feelings.

7.  Progress is progress.  Max is about 18 months to 2 years behind his peers.  It is hard to see other friends with children the same age as Max doing things that Max can't do yet.  But on the flip side it is so rewarding to see him accomplish even the littlest thing.  Max is working on full sentences with commands at school right now.  He says "I want choco-milk."  Or "I want bread."  This is huge progress.  Socially Max says "Hi and Bye" and waves to people who are entering a room.  I love progress because it can be little or big but it is moving forward, it is a step in the right direction.

8.  I used to be so scared to take Max out of the house.  I hated taking him anywhere because I didn't want people to stare at him while he was having a tantrum, or crawling on the floor watching the wheels of the shopping cart, or repeating the same word while flapping his hands.  I was embarrassed.  And that was the wrong thinking.  Max isn't embarrassed, he doesn't know any better, and you know what he is happy crawling on the floor.  I needed to change my thinking.  Max deserves the same experiences other kids have, and if that means a few tantrums and people saying something rude or staring at us, so be it.

9.  Talk about your child.  People are curious.  It is human nature.  I am open to telling people Max is Autistic.  I am not trying to excuse a behavior, I am hoping it makes people aware.  People are different.  Children are different.

"Everyone is handed adversity in life. No one's journey is easy. It's how they handle it that makes people unique."

10.  Laugh.  A lot.  Oh do I laugh a lot.  Max has said and done the funniest things.  He makes jokes, and wants to make you smile.  He is a fun kid.  Entering his world as been the BEST decision I have made as a mother.  I love his laugh, and I hope he continues to like mine.

Autism Awareness Month April 2015 - I hope you all Light It Up Blue for Max and for Autism.

Thank you for your love, support, encouraging words, and prayers.  It means so much.
Tiffany Strong

Giant Steps Charity Dinner and Auction

Max goes to a wonderful preschool.  I have been so amazed at the progress he has made because of Giant Steps Autism Preschool.  He has the most amazing teacher, aides, and support team.  They go above and beyond the call of teacher.  They are friends, advocates, and support my entire family.
Just yesterday Max's teacher offered to come to our house to help with potty training.  It is gestures like that that make Giant Steps amazing.

Giant Steps is holding a Charity Dinner and Auction to raise money for the classrooms.  It cost over $250,000 dollars to start a new preschool.  There are currently over 130 children on the waiting list for the five classrooms in Utah County.  Each classroom can enroll 10-12 students.  There needs to be more classrooms in Utah available for children on the Autism Spectrum.  Support for the entire family is key, and so is early intervention before a child enters Kindergarten. 

The Charity Dinner and Auction is MARCH 28, 2015.

Recently the Provo Mayor did a blog post on Giant Steps Autism Preschool.

Giant Steps was also on the news promoting the school and the Charity Auction. You can watch the video on the Mayors Blog post or on the Giant Steps Website. 

We need your help.  

If you know of a business, family, or would like to personally make a donation or be a sponsor please either contact me at Tiffstrong707@gmail.com, or follow the link to directly donate on the Giant Steps Website.  Please share this blog post with others if you feel inclined.  

Follow Giant Steps on facebook.  Join the event page to get updates and also view items that have already been donated for the auction.

And most of all THANK YOU for your love and support.  Max is so lucky to have so many people in his life that love, care, and pray for him on a daily basis.  We are so grateful as a family and feel your love daily.   

 We have entered Max's world 

and it is such a wonderful world to be in!