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.*

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

And a second article:  http://www.ot-mom-learning-activities.com/hand-dominance.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. 

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.

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.   

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. 

 

Giant Steps Auction 2016

Hello wonderful friends and family!

For the last 2 years, Max has attended Giant Steps, an amazing preschool just for autistic children.  When dealing with Autism, early intervention is very important.  One March 31, Giant Steps is having a charity dinner and auction.

The auction raises funds to pay for field trips, occupational therapy, music programs, classroom supplies, and a bunch of other fantastic stuff.  Our family wants to raise enough money to sponsor a table at the event.  We are organizing a donation team called "Spaceship Max" and we want you to join!  Your donation, combined with the donations of other friends and family, will make a big difference in the lives of some very special kids.

Please help us give back to a school that has changed all of our lives.  Giant Steps has helped us to enter Max's world.

For more information on how to donate go to friendsofgiantsteps.org.  When you make a donation, either by PayPal or by check, be sure to note that you are a part of team "Spaceship Max."  Use the memo line on a check, and to donate online click the donate button on the website.  Then once directed to paypal type a note by clicking on "add special note to the seller" line.

Thank you, from Will and Tiffany Strong

*A special thank you to Bryan Sours Photography for taking the amazing pictures of Max.

Autism can be complicated.

A much needed update on my sweet Dexter. 
Something I have learned over the past 2.5 years of Dexter's life is to always go with my gut.  I have always thought there was something going on with Dexter, and it was more than just a virus.  And in between all the blood work, doctor visits, specialists, and sleepless nights I knew there was something else going on with my sweet little boy. 

In November I sought out a second opinion about what I have continued to notice with Dexter.  I am so grateful for Dr. Heather Harrison and her listening ear.  Because of her in December we were able to have an EEG and MRI of his brain done.  It was noticed in the EEG that he was having seizures. 

We then were sent to a Neurologist.  We finally got into the Neurologist yesterday.  Dexter has Autism induced Epilepsy.  This is common with kids with Autism. (33% of kids with autism have epilepsy) The doctor (Dr. Nelson in Provo) was very knowledgeable with children with autism and he was great at answering our questions.  Dexter is going to be starting a daily medication that he will take most likely forever.  The medication will need to be adjusted, like all medications, as he grows.  There are side effects, but hopefully we will see minimal.  He goes back for follow-ups monthly.  Then twice a year visits once the medications are stable. 

Dexter is autistic, and epilepsy is a side effect.  Most likely his sleep issues are from autism and also the seizures.  We are hopefully that once the seizures are under control his sleep will improve.  There are a lot doctors who don't know about autism, but there is a lot doctors know about seizures.  So we are grateful for that.  Over stimulation is a primary cause of seizures for children on the spectrum.  We need to start being more aware of what overstimulates Dexter and what makes his brain seize and body shake. 

Here is a good article explaining the links and what Dexter has been dealing with since birth:
https://www.autismspeaks.org/family-services/epilepsy

Dexter is a very strong little boy to have been dealing with this since birth.  He has been dealing with night terrors, fevers, failure to thrive, growth issues, headaches, daily seizures, little sleep, and psychotic episodes (uncontrollable screaming, shaking, not knowing where he is, hallucinations, etc).  But if you know Dexter you will notice he is a very happy kid.  This is a huge blessing.  I am so glad he hasn't lost his sense of happiness through all of these trials.  

Thank you for all your support.  We know our family is complicated but Will and I honestly wouldn't have it any other way, we don't know any other way.