Thursday, March 2, 2017

Honesty

Writing a blog about our autism journey has been so therapeutic.  Will and I are able to look back and see the progress that Max and Dexter have made in the last 2 years.
This week I have been looking back a lot.

Max and Dexter have made progress but some days, weeks, even months feel like we are drowning and can't catch a breath.  That has been the last two weeks.  Max is regressing in school and at home.  He isn't sleeping, and it is taking a toll on our family.  He tantrums most of the night. From about 5pm until he falls asleep.  And his tantrums are becoming more violent and extreme.  He is also a big 5.5 year old, weighing 53 pounds and 48 inches tall, who can physically hurt you if he is in a rage/manic stage.  We do a lot of therapy methods at home, and try to stay as calm as possible, but some nights I loose my cool.  I yell and cry and get upset with Max.  I then have a pity party and Will tries his hardest to tell me what a great Mom I am.  These nights are hard, and I know it is just a part of our life, but some days I just want some normality.
Why the tantrums?

Will and I have been asked "Are you sure they are autistic?  They seem so calm when you are out. And your pictures show how happy they are."
Another common statement we often hear about Max and Dexter is "They are just acting like children, they are growing up, you must be too soft on them, and you are worrying to much."

I often don't know how to respond to these statements or questions.  Two years ago I would have been on the defense, but now I am confident with both boys diagnosis.  If you spend time with them at different parts of the day, and for more than a few minutes at a time, you will begin to understand what Will and I experience daily.  Max often holds emotions in all day at school, but then at night his brain is overworked and overwhelmed.  This is when he becomes aggressive, angry, and what other people would describe as depressed.  His emotions change minute to minute some nights. He is being taught at school and at home (through therapy) how to show emotions in a positive and constructive way. His processing speed is slower than a typical child so progress is slow.

Real life vs. social media life can be deceiving.  I try to share our real life.  But if I only showed the hard times I would get depressed.  I find comfort in looking back at the happy and positive moments, it also shows the progress we have made as an Autism Proud family.

Both Max and Dexter have such amazing attributes. 
Max is so sensitive and has been since he was born.  He studies the world.  He loves his family, and even takes a picture of us to school with him each day.  He loves Dinosaurs more than anything, to the point where he believes he lives in a dinosaur world.
Dexter is a ball full of energy.  He gives the best hugs and can smile his way out of anything.  He loves letters and has been able to identify the letters of the alphabet since 14 months old.  He is really into video games, and can make his own Mario Maker levels.  He also is a great brother to Max and has helped Max find his physical voice.

Will and I have days filled with fear and doubt, but they are often forgotten when we see the boys accomplish something new, or put a shirt on by themselves for the first time. Those moments make us feel like we are doing something right as their parents.

Sunday, December 4, 2016

What is it like to live in the dark?

It is 5:30 on a Sunday night.
We are currently sitting in the dark.  Not because we are watching a movie, or going to bed, but because Max hates lights.
This is Max running to turn off the lights I just turned on.  (My bad.)
Max's OCD and anxiety have been getting worse.  He follows us around the house closing all of the doors. The doors and lights have to be closed and off for him to be able to relax and calm down. He has to have the lights off (or what he calls "the moon") from sunrise to sundown.  It is becoming a hard way to live.
If we put the lights on he goes from calm Max to over-the-top, out-of-control Max.  He cries, tantrums, throws, bites, kicks, and argues - which can last for up to 2 hours.  Yes, we have tried a lot of coping mechanisms, we have tried tents, sunglasses, and other ways to make it dark for him beyond just turning off the lights. (Because that just leads to a meltdown.) Will and I have talked to his teachers, other autism families, consulted Dr. Google and alas they have no ideas other than what we have been trying.

We are hoping this is a phase.  One that will go away quickly.  But for now we are trying our best to stay calm.
That is Max.  In the dark.  Under a tent.  With the lights off. 
Autism just doesn't go away, there is always something new and unpredictable.  So when people ask "He seems to be doing better?"  or "Is the Autism going away?" Or they comment to us how "lucky we are to have an easy autistic child!"  Yes, we are very blessed to have a sweet boy.  Max struggles daily, and sometimes his struggles come out in unforeseeable ways.  Autism is magical, but is also frustrating and hard and something our family lives with.  There are silver linings and amazing moments, but there are also moments where I want to run and hide.  (And cry and wonder what the hell I am doing?) 

So currently if you come to our house, bring a flashlight, and some patience.  You will be in the dark.  And Max still doesn't wear clothes in the house, so expect him to be in his cute boxer briefs.

*And for me writing down my frustrations is the best way to deal with stress.  Hence this blog post.*

Tuesday, October 18, 2016

Max's Kindergarten IEP

I have taught now for 13 years.  I have been to tons of IEP meetings and have met with hundreds of parents for Parent Teacher Conferences.  But nothing can really prepare you for your own child's first parent teacher conference.  It is so weird to sit on the other side of the table.  As I drove to Max's school I was nervous and had a pit in my stomach.  What were they going to say?  What are they thinking our home life is like?  Am I am bad parent?  Did we make the wrong decision to send him to Spectrum?  Do they love Max?  So many unanswered questions were racing through my head.

First, what is an Individual Education Plan or IEP?
Each IEP must be designed for one student and must be a truly individualized document. The IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities.
Both Max and Dexter qualify for an IEP because of their autism diagnosis and their inability to reach the state core curriculum without assistance.  Having an IEP can really help a child be successful.  I have seen it first hand in my own classroom, and with the proper accommodations and goals children really can be successful.  
One of Max's IEP goals is to be able to use scissors properly to cut out a circle.  They will practice first cutting straight lines and then slowly move toward the goal.  He has a year to complete the goal, but if the goal is met before the year mark then we can meet with the IEP team again and establish a new goal.  If the goal doesn't look like it will be met, we can either keep the goal or make a new one.  
Max has 2-3 IEP goals for math, speech, occupational therapy, physical therapy, and also social/emotional skills.  

Something that was very interesting at Max's IEP was learning that Max hasn't picked a dominant hand.  We thought for a while he was a lefty, but when you observe Max for long periods of time you notice he doesn't have a dominance.  This is typically established between ages 3-4.  His brain hasn't established dominance yet and will actually need OT/PT to help his brain.  It is really interesting how Max's brain works.  
If you want to read more about hand dominance and the brain here is a great blog post:  http://www.ot-mom-learning-activities.com/handedness.html

As Max continues to learn and develop his IEP will also change.  Currently Max is in an adaptive skills Kindergarten class.  He is lower on the Spectrum and has challenges that need more 1-on-1 care than other children his age, even at Spectrum. 
I am glad to know he is loved at Spectrum.  I have never felt more confident in the decision we made as a fmaily to send him to school there.

I am also glad that my first parent IEP is over.  I really had nothing to worry about. 
This is Max on his first day of school at Spectrum Academy.  Spectrum Academy is a k-12 charter school for students on the autism spectrum. 








Sunday, August 21, 2016

Autism Goes to Church - #1

From the dad:

Today at church, during Sacrament Meeting (main congregational sermon meeting) Max was having a rough time. The lights and organ and singing and loud microphone voice all combine into one big overstimulation party. Then we ask him to sit still and stay quiet. Ha.

To distract Max and Dexter today I started drawing pictures. First trucks and airplanes.



Then sharks, whales, Mario, and Pikachu.


Then Max started talking about eating vegetables and how they go into your tummy, so I drew a diagram.


Well, Max also knows where food goes after it leaves the tummy and he started talking about it. Then without warning, Max said "I love the POOPIES!" Said it loud and proud. 

I was rolling, trying to keep all the giggles inside. I was partially successful.

Tuesday, July 19, 2016

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

Monday, July 11, 2016

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:


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:


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





Sunday, July 3, 2016

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.