Tuesday, July 1, 2014

Guest Post: Max

Today we get to learn about Max, who was diagnosed with autism. I met his mom, Tiffany, through my specialreds facebook page, and we have become virtual friends! I really admire all she is doing for Max, and what a wonderful mom she is. I hope you enjoy hearing their story.

Max was born after a long 54 hour labor.  He had a large head, chubby little body, and a very small amount of blond hair.  He looked exactly like his dad.  He was a very quiet baby.  Hardly cried and slept through the night at a very early age.  He was a tank and was never sick his first full year of life. Still to this day he has only really been sick once and has had two ear infections. 
Max was a big boy.  By his first birthday he was 28 pounds and 31 inches.  
He stayed chubby and happy until he started to walk, and then he stretched out although he is still thick and tall.  At 2.5 he was 38 pounds and 38 inches.  
Max was a little late developmentally but we were never really concerned.  
At 11 months we went on a trip to California.  Grandma Strong has an amazing collection of Disney CARS.  Max was in heaven.  That was the first time he really played with so many cars. He would play for hours.  Lining them up, ordering them, and specifically looking at how the wheels moved.  Everyone thought it was amazing how he would spend so much of his day playing with and looking at cars.  He wouldn’t want to do anything else. 
For his first birthday we had a huge party.  It was fun for everyone except Max.  He was so overwhelmed.  When we sang happy birthday he just cried and cried, and wouldn’t calm down. Ever since then any time happy birthday is sung he still cries.  
At around 14 months Max started walking.  He would run on his tip toes.  He loved being mobile, but still didn’t want much to do with anything besides cars and the occasional train.  Max wasn’t talking hardly at all.  He signed, but no words.  He would yell to get our attention or have a major break downs.  This is when I started to wonder if he couldn’t hear.  I looked up online about hearing loss or deafness in one or more ears.  At his 18 month check up we had his ears and eyes checked.  No problems.  The doctor told us boys talk later and to just keep reading and working with him at home.  So that is what I tried to do.  My teacher in me came out, I made flash cards, got books upon books, looked up apps on our iPad to help him talk, and we started watching the show Word World on PBS.  He wanted nothing to do with his mom and her crazy ways, he wanted cars.  This was upsetting for the teacher in me, I wanted him to like learning, I wanted to teach him.  He wasn’t talking he was frustrated, he would yell at us and cry.  He wouldn’t point to things or ask for help, he would just yell or cry.  Will and I were also getting frustrated.
At 18 months Max was able to go to Nursery.  In our church Nursery starts at 18 months and is for two hours each Sunday.  Basically the toddlers play with toys, sing songs, and enjoy being social for the first time in a huge group setting.  In Max’s nursery class there were about 10 toddlers, and 4 adult leaders.  Max would go and play by himself with cars.  During the transition from toys to singing time there was always a meltdown.  The nursery leaders would try to calm him down, but he ended up having to be taken out and calmed down by Will or me.  This happened week after week.  When we would look at him while he was playing, he wouldn’t even notice the other kids, he would be by himself playing with cars.  When singing time started he would go into a corner and rock and sway by himself.  This started to concern me.  But honestly I kept being told by others that “it is normal, social situations are hard, he will learn to play with others, and don’t worry.”  Max was my first child, so I was not aware of things I should be concerned about, but in my heart I knew something wasn’t right.  
At Max’s 2 year old check up I was 33 weeks pregnant with our second son.  I had a rough pregnancy and I was excited to be done with being pregnant and give Max a little brother to play with.  Dexter was born three weeks early on July 25th, 2013.  
Having two boys at home was fun.  I was so excited to see how Max was going to react to Dexter. But he pretty much ignored him.  His sleep got worse than it had been in months.  He was lethargic during the day and taking longer than normal naps.  Will and I tried so many things to get him to sleep better at night, even taking away naps.  But the weeks of bad sleep turned into months.  With a newborn and a toddler who wasn’t sleeping it became a whole family problem. Max was staying up until 2am.  Something wasn’t right, we had to get help.  
Around my birthday in September I started having a lot of anxiety about Max going to preschool.  I knew it was a year away, but I started getting so worried.  How would he be able to play with other kids?  How would he eat while he was there?  How would he go to preschool without his Dad? Potty training, Heaven help me?  I started to think this just wasn’t going to work.  
Max was also displaying other concerning behaviors.  He was having tantrums.  Not the typical 2 year old tantrums but ones that would last for hours.  He would hit his head against the door, floor, and anything hard.  He would throw everything in sight.  He would ONLY calm down for Will.  Will learned early on that he liked to be held tight and rock in place.  That was the only way he calmed down.  Max only wanted Will.  It was heartbreaking.  I was his Mom, why couldn’t I give him enough love to calm him down?    He also couldn’t be in large groups of people without having a huge breakdown.  He still wasn’t talking much at all, saying maybe 10 words.  And if he gained a new word he lost one he had the day before.  Max also loved watching running water and the fan, something I thought only newborns did.  He still wasn’t pointing when he wanted something, and was getting more and more difficult to parent.  

Food was another whole issue.  He drank milk and apple juice.  He lived on those two things.  And it wasn’t for lack of trying.  We offered him everything, he just wouldn’t touch it.  He sometimes would eat WHITE bread, WHITE cheese, Popcorn and randomly raspberries.  But those were seldom.  It was heartbreaking.  People would always say to us “WOW Max must have a great diet and eat a ton, he is so big.”  And we would shake our heads and explain that his diet was milk and apple juice.  I am pretty sure people thought we were lying.  
Around November of 2013 I started doing research on Autism.  At first I would make mental notes of what was going on with Max.  Then I started seeing correlations of what was going on with Max and what I noticed online. One of my good friends worked for the Alpine School District in Utah, specifically she worked with the Autistic Kindergarteners.  I called her.  I cried to her.  I told her my concerns.  She was so loving and supportive, but encouraged me to get Max help and to go and talk to our pediatrician.  And that conversation was the turning point for our family.  I told Will my thoughts and feelings and he was too on board.  We also told our parents, and they too noticed things in Max that was concerning.  

At Max’s 2.5 year check up Max took the MChat.  It is a preliminary test to see if your child might have Autism.  Max didn’t pass.  We then took him to Primary Children’s Hospital in Salt Lake to get more help, diagnosis and a plan to help Max learn and thrive.  
After a lot of prayer, love and support from friends and family, and a lot of information given to us by doctors, speech therapists and psychologists we finally felt like we had a direction for Max.  We finally felt that after months and months of wonder, we had some answers.  

Max has Autism. He is still Max.  He is still my little boy who loves music, Phineas and Ferb, cars, trains, and Winnie the Pooh.  Max is very loving and gives awesome hugs.  Max is going to thrive, and be successful.  He isn’t broken or sick.  He has Autism.  I don’t feel sorry for him and don’t want others to feel sorry for him either.  What I want is for people to be accepting, to try and understand him, to realize that he might not learn or develop like the typical child, but he will learn.  

"A child with Autism is not ignoring you, they are waiting for you to enter their world."
Will and I have decided to start a separate blog for Max.  We want to post things that have helped us, and how Max is progressing.  We hope others can find it helpful and informative.
Max's Blog:  http://spaceshipmax.blogspot.com/


  1. Thank you so much for featuring Max. He is a special little boy and I am so blessed to be his mommy.