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.

The Chase

Max has been playing more and more people games.  Just this past month he has learned that chasing is really fun.  He used to just stand and watch others chase, look and go back to his own world, or would only run away.  Now he comes back and is the chaser. He is participating in the chase.  Dexter and Max LOVE this game, and of course play it any chance they get. They love playing around the couch.  Max has been loving having his Cousin Charley so close because she is also happy to play "The Chase" with him too.  Charley says "I'm going to get you" and Max now repeats it and says "Get you!"

It has been really fun to watch Max learn these last few months.  He is picking up on more social ques and becoming more confident in social settings.  Nursery at church is still hard, and he does things that make the other kids ask things like "what is he doing?"  Or "Why does he do that?"  But he is progressing.  And my doctor has always told me that progress is progress no matter how big or small. 

Gratitude

I would like to thank you all so much for the outpouring love for Max and our family.  It has been astounding to read emails, messages, texts, and receive phone calls from friends and family.
Last week I posted on facebook this message: 

The post got the most "likes" I have ever had.  I didn't even realize I had that many friends on facebook who care about my little life.  Thank you for those who have shared Spaceship Max with others.  Thank you for those who read the posts. 

This blog has been so theraputic for me.  It has given me a place to write my feelings and show the good, the bad, and the in-between of having a child who is Autistic.  I hope that I am able to help others.  I hope that I am able to teach others about the Autistic Spectrum.

Thank you all from the bottom of my heart.
I can't wait to continue to write about Max and all of his Space Adventures.  

My fears for Max

Max starts pre-school in a few weeks.  I am really excited for him to start a new phase in life, but I also have so many fears.  I have been laying awake at night thinking about not just preschool but elementary school and high school.  I have reservations about sending Max to school, but I know in my heart this is the right thing for him and for our family. 

I am going back to work part time starting this week.  I am going to be teaching 6th grade math at Walden School in Provo.  I am excited.  I love teaching.  But there is part of me that worries about leaving the boys, especially Max.  Will is going to be home with both boys.  Max goes to pre-school two times a week at first, then most likely will switch to three days.  He will be at school in the morning. 

Why do I lay up at night?  Why do I worry?

I hate the term "getting better" because he isn't sick.  He doesn't have a cold, or the flu.  He has Autism.  He improves.  He learns.  He grows.  He has set backs.  He is going to have difficult things to deal with in his life.  Especially socially.  I worry about those things.  I have fears.  

My fears are simple fears. But real to me. 
1.  Will Max make friends.  Real friends.  Not just friends who "deal" with him or are forced to be nice to him.  But friends that will love him and his quirks.  Friends that will understand and accept him for the special boy he is.  Friends that will come over and watch Disney movies and won't care if he has all the lines memorized and all the actions in sync. 
2.  Is he going to be able to leave Will.  Max is so attached to his Dad.  They are best friends.  They get each other.  Will understands Max more than anyone.  And Max uses will for comfort, friendship and making the connection between his own world and the world we live in. 

 3.  Bullying.  Teasing.  And being unkind.  I think I worry about this the most.  I have already seen other kids laugh at him and make fun of him.  I have seen kids laugh at the way he "talks" and mumbles, the way he tantrums and the way he plays with trucks.  I notice.  I hope that Max will learn to stand up for himself, or have a group of friends that will stand up for him. 

The other day we were at the mall.  Max was having a total meltdown in front of The Gap.  I am used to other parents looking, staring and giving me the stink eye.  I laugh at it now, but it used to really bug me.  Sometimes I want to scream and say "so your child is perfect and has never had a tantrum in public, wow, you are blessed!"  But I don't.  I keep calm and concentrate on my son.  But this particular day there were kids sitting on a bench watching him, and laughing.  It broke my heart.  Max looks older, at least 4 or 5.  He shouldn't be acting like this.  But he is 3 and Autistic.  So this is what we deal with. 

4.  I fear that his brother is going to resent him.  I fear that he is going to be embarrassed by him.  I look forward to the day where Will and I get to talk to Dexter about Max.  Explain to him how Max's mind works.  Explain that he needs to be loved and accepted. 

 5.  He is going to be labeled at school as a "problem" or a kid that "has issues."  Trust me.  I am a teacher.  I know these things happen.  I pray that he has teachers throughout school that love him and accept him.  I try to be this teacher in my own classroom.

Max still has hard days.  When people see him, they usually see him in his element or at a good moment.  But when our condo door closes and he has a meltdown, a panic attack, or stays up until 3 or 4 am that is reality.  That is what we deal with.  It is hard to explain to people "Yes he is doing well, he is learning new things, he is saying more words."  When the night before was hard.  When he hit his head so hard on the wall that he has a bruise. 

 Fears.  These are also real.  

Schedule vs. Routine

Max has a definite routine.  He has a way he wants things done and has a very hard time deviating from the routine. 

• Max always has to have Gerald and his two blankets to drink anything.  He holds onto them when drinking from his sippy cup.  He will look all over the house before he calms down to drink anything. 
• He eats popcorn out of a specific bowl in the kitchen.
• He likes to fall asleep on the floor and then we carry him to bed.
• He needs Will to be with him when he falls asleep.  Even if he is just in the room he is okay but Will must be visible.
• He puts himself down for a nap, not at the same time, but the same way.  He must have his blankets and Gerald and a cup of chocolate milk.  
• The way he plays with his cars is a routine.  He lines them up a specific way, and remembers where certain cars go.  If you take a car out of the line up, he will find it and put it back in the same place.
• When he does say words it is because he has made it a routine.  For example right now we are working on hello and goodbye.  He routinely says hello and goodbye to people, animals, and even things (like the pool) but he doesn't make great eye contact.  He just knows this is what we do when we leave or when a person walks into the room.  Hearing him say "hi dawg" and "bye bye pool" is pretty cute.
• When Max asks for cheese, he always wants a piece of bread.  He will rarely eat one without the other.  

Our family schedule changes constantly.  He does have a bedtime routine and we do things the same each day, but as long as his "routine" isn't off he does okay.  We are traveling right now to California.  He does well with traveling as long as he has his daily routines.  He doesn't even mind sleeping in a hotel or in a new place.

Routine is very different than a schedule.

Music - Part 1

Max has always LOVED music.
Since he was a baby he has loved the sounds music makes.  We used to have a CD player in his room when he was newborn, we would play Disney Lullaby's on it.  He then got a Fisher Price Mobile that he LOVED and would even turn it on in the night when he could reach the buttons.

He can memorize music and the beat like nobody else.
It started out with Elmo's world and Yo Gabba Gabba.

It is a amazing to me sometimes he will hear a song once and know the beat and some of the catch words.  He memorizes not only the beat but the motions that go along with it any song.  Currently he loves Phineas and Ferb, Winnie the Pooh and the Muppets, but he will memorize anything with a beat.  Even though he doesn't say most of the words, he knows the inflections. 

For example in the movie cars he knows the music with words, but also the background music and the motions the cars make when they are driving.  

Music calms him.  He is soothed by listening to music, especially music videos.
Story Bots are some of his favorite music videos.
If you haven't see the You Tube Channel for Story Bots you should check it out, they have so many GREAT educational videos and they are done with great animation.

Here is a GREAT story about Music, Chimes and Autism:
http://www.autismspeaks.org/blog/2014/04/11/chimes-autism-inspired-boys-passion

Aquatic Therapy

Max started Aquatic Therapy last week. (April 31st, 2014)

Since Max was very little he has loved being in the water and watching water.  We have on many instances found Max in the bathroom watching the water pour out of the faucet.  It is soothing and calming to him.  The warm water provides a safe and supported environment, which not only supports Max, but also provides him with pressure that surrounds their body in the water.  Max likes to have pressure around his body, it makes him feel safe.  The aquatic Therapy is also helping with his Social Skills because he is being forced to interact with his therapist and other children in the class. 

Aquatic Therapy is being done at the Provo Rec Center.  Which is perfect for us since it is about a mile away and we have family passes.  His therapist is working with him on "People Games" and also on following simple demands and directions.

People Games are lessons and simple games that help children become independent and learn skills needed in society.  They start out with simple skills to more complex.  The games at first might seem insignificant because they are things you would innately do.  Will and I were doing people games with Max before we even knew they had a "term."  Max enjoys doing things like rolling a car back and forth with a partner, holding hands and jumping up and down, pouring things in and out of a box, and playing chase.  But the KEY to people games is to have Max initiate them. 

Simple directions are things like "One two three jump" and "One two three kick."  They give a direction and a command when to start.  It is organized and scheduled.  These type of direct commands with repetition will help Max focus and complete the task. 

We are going to continue with Aquatic Therapy until Max turns three.  Then he doesn't qualify for Early intervention anymore and we are going to be looking for more therapies for him to do.  But that is another post.

So much to learn...but so grateful for those who have already lead the path to help us best serve Max. 

What is an ASD tantrum?

All kids have tantrums now and again.  Usually it is over frustration or not getting what they want.  I remember the first time I met my oldest Nephew, he was in 6th grade at the time.  He is a senior in high school this year and is a calm, intelligent and all around great young man.  I couldn't even imagine him having a tantrum.  Will tells the story of a time where this calm, cool, and collected nephew had to be carried out of Target on Will's shoulder because Will wouldn't buy him the toy he had his heart set on.  Will says he screamed and cried all the way out of the store and into the car.  I feel like it is a right of parenting passageway to have one of these episodes with your child.  These tantrums are normal.

Then there are the out of control ASD tantrums that Max has that warren a concern.  At first glance it looks like a tantrum, but then it turns into rage.  Max was having 5-6 of these a day at one point.  Max's ASD tantrums would last anywhere from 5 minutes to an hour. A lot of the time they would come on suddenly without a motive.  Max would hit his head against the floor or wall, his hands would hit his face and he would run all over the house screaming and throwing things.  His whole body would be in a state of panic.  There have been times I have had to call Will home from work because I wouldn't physically calm Max down from a tantrum.

Why do Autistic children get so out of control?  What causes these tantrums?

"One of the most misunderstood autistic behaviors is the meltdown.  Frequently, it is the result of some sort of overwhelming stimulation of which cause is often a mystery to parents and teachers.   They can come on suddenly and catch everyone by surprise.  Autistic children tend to suffer from sensory overload issues that can create meltdowns.  Children who have neurological disorders other than autism can suffer from meltdowns. Unlike temper tantrums, these children are expressing a need to withdraw and slowly collect themselves at their own pace." From The Examiner.

We have learned a lot about tantrums and how to avoid one, and how to calm a tantrum when one comes on.  Will and I ARE NOT perfect, but we are learning how to stay calm and not over react.  The most important part of a tantrum is to keep the child safe from harming himself and others.

Here are some things we have been doing to help us manage The Tantrum:

• Max tantrums a lot more if he is overtired.  Sleep is a whole other topic.  But bottom line is, when Max gets sleep, the less he tantrums.  
• Max is calmed by physical touch.  Will holds him really tight and does deep breathing with him.  This has been helping Max since he was really little.  
• Max loves to watch the fan spin.  If we can get him focused on the fan and drinking a cup of juice or milk that will help calm him.  
• Max has sensory overload with loud noises, and large groups of people so we try to avoid these places as much as possible.  
• Talking in calm voices ALL the time helps.  
• Not over loading him with toys also has helped.  
• Getting physical exercise 
• Not taking Max to places that naturally cause tantrums - like a toy store.  
• Having a plan if a tantrum happens.  For example in church if the music is to loud, we immediately take Max out into the foyer.  This stops a tantrum before it happens.  
• Teaching Max by role playing "people games" to illustrate what proper behaviors look like has helped.  
• When we leave somewhere now we say "bye-bye pool, or bye-bye ducks (at the pond)" to illustrate that we are leaving but will be back.  It has started to help with transitions from one activity to another.  
• Patience - we are learning and will keep practicing our patience.

Will and I are learning more and more each day.  Each child on the ASD spectrum is different, and on some days NOTHING works and we have to wait out a tantrum.

To read more about tantrums My Aspergers Child has some great information. 

I also LOVE this statement about tantrums:

Echolalia

One of the very first things Will and I noticed, and questioned, about Max was his constant repitition of sounds.  He would go into another "world" which now we call "Max world" and repeat the same set of sounds over and over for up to 5 to 10 minutes.  Sometimes he would rock while making the sounds, other times he would be playing with cars, other times he would be standing alone.

What Max was doing is called Echolalia.  Or Echoing.  It has been reported that up to 75% of verbal persons with autism can exhibit echolalia in some form.

His echoing has become clearer in the last few months as he has gained more words.  So typically he will end a long string of sounds with a word he knows.  For example "ba da ba la ba ba ba Car" or "ba da ba la ba pppp Tire."  

Here is a video of Max Echoing:

-Tiff