Practice what you preach

I have been a huge advocate for early intervention since Max's autism diagnosis.  Early intervention helps not only the child but gives parents resources, a community, and also a place to learn how to better help their child.  Both Max and Dexter have benefited from early intervention through Giant Steps Autism Pre-School.

"If you have met one child with autism, you have met ONE child with autism."
Each child on the spectrum is different.  What works for one child might not work for the other.  Something that might be really hard for one child might not be a challenge for another.  I believe this to be true with all children not just those on the spectrum.  But when you say "my child is autistic" there seems to be a in the box definition. Believe me when I say, autism is never inside a box.

Dexter is going to be four this July. 

Dexter, 15 months.

Dexter has been attending Giant Steps since September 2016.  We are eight months into the program and we have seen amazing strides in his development.  Dexter is really smart, he is cognitively on track with his typically developing peers.  Sometimes I put the other challenges he has aside because he is so smart and so clever.  This week I had a huge wake up call and Will and I had to make some big decisions about Dexter, something that I was not expecting.

The plan for next school year was to have Dexter at Walden.  Walden is where both Will and I teach.  Walden has a preschool and he would thrive academically but there was this nagging feeling that other aspects of his development would regress.  I wanted so bad for him to be at a typical school, and selfishly I wanted him to just "be normal."  Having Dexter at Walden would help our family schedule, our family finances, and would just be easier (day-to-day).

Yesterday I met with Dexter's teacher, his speech therapist, and his OT/PT specialist to go over his progress and some testing results.  And while his cognitive development is great, he struggles in other areas (you know the areas I was ignoring).  I realized that Dexter needs Giant Steps.  He needs the physical therapy, the behavioral therapy, and the occupational therapy that he wouldn't get at Walden.  He needs an autism specialist, and frankly so do I.  Dexter is so different than Max and I need to be educated on how to best help Dexter on his own journey.  The strides he has made this year are astounding, why wouldn't I want him to have another year of early intervention to keep the momentum going?  I was being selfish.  Dexter deserves the same support Max had for two years at Giant Steps.

The future is unknown.  Will Dexter go to Walden, who knows?  Will Dexter go to Spectrum with Max, who knows?  What do I know about his future?  Not much, except that his mom promises to do a better job looking at his whole person.

*A huge thank you to Tiffany (Dexter's teacher) who has been so supportive and loving to Dexter this whole year.  She has been the perfect person for Dexter to learn and grow from.  We love you Tiff.

----------And for the record----------
"My colleague, who is not a parent, and lately has no filter, reminded me that the needs of my children are more of a priority than my convenience. For four hours a day, it is not worth the progress he could be making,' she said in a matter of seven seconds after being questioned. 'Our school isn't equipped to handle autistic children in a way that Giant Steps can. Besides you waited forever to get into that school. It's a no-brainer."'

Thank you Jamie for talking to me and also for being an upfront good human. 
I needed to hear this.

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.

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.

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