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.

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 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. 

 

Underwear Required

Max lives in a very naked world. Underwear required. 

Max is now potty-trained which was a HUGE deal! 
He still wears pull-ups at night, but most nights will wake up dry and go potty right when he wakes up.  It has been life changing.  He gets so excited about going and screams "I did it!" after every success.  But beyond being potty trained his sensory issues have taken a huge nose dive. 
He hates clothes and takes them off any chance he gets.  Now, we understand that being naked is a part of childhood, and it is "normal", but Max screams, cries, fights, and tantrums over the thought of getting dressed.  He has taken his clothes off in inappropriate places and we have had to fight to put them back on.  He doesn't like the feeling of anything on his skin, not matter what fabric.  He tolerates it when he is forced.  We do know that cotton clothing and soft materials are more tolerable than others. 

At school he wears these noise blocking earphones to help block noise. 

Dexter has his own sensory issues.  He doesn't like anything covering him while he sleeps, he hates loud noises and gets overwhelmed in loud places.  Dexter is starting to become very picky with textures of food, and just like Max, is starting to drink more of his diet than eat solids.  We are trying different methods to get Dexter to eat, and when either Max or Dexter requests something to eat we are happy to oblige for them.  We just need both of them to get calories.  People are always shocked when they hear how Max eats because he is off the charts in height and weight, but Dexter isn't even on the charts and can use the calories!

One thing that Will and I wish people would understand about Max and Dexter is how overwhelmed they get in large groups, on holidays, and anything that is out of the norm.  For example, Thanksgiving Day was spent at Aunt Katie's house.  We had a great time, and Max and Dexter actually did great.  Max had one major melt-down but other than that the day went smooth.  On the way home Max got fixated on a helicopter that he played with at his Aunt's house.  This turned into a tantrum that lasted all the way home, and then into the night.  It took us two hours to get him calm and into bed once at home.  Then the next day his body was exhausted and he spent most of the day calming his brain down.  He spent so much of Thanksgiving trying to stay calm which takes a lot of brain power for Max.  We have to pick and choose how many events we do in a day and in a week because too much can really be hard on our whole family once we get home. 

Holidays and social situations have changed for us.  But our boys are teaching us that it is okay to be different.  Different is good. 

Overwhelmed on Halloween

Being overwhelmed is such an awful feeling. 
It can be described as: 
-to overpower or overcome, especially with superior forces; destroy; crush.
-to cover or bury beneath a mass of something
-to load, heap, treat, or address with an overpowering or excessive amount of anything 

(a child overwhelmed with presents; to overwhelm someone with questions.)

 

I get overwhelmed and anxious when I have to much scheduled in one day.  I start the day feeling tied and worried about the long-jammed-packed day ahead.  I also get overwhelmed if I get behind on grading and the piles are stacking up against me.  

 

This year for Halloween we were prepared for Max to be overwhelmed by the end of the two day holiday.  This year Halloween was two days because it was celebrated in school on Friday and also on the actual day of Halloween.  This year was better than last year, and I am sure in years to come  will be even better than the last.  

 

Max gets overwhelmed easily.  He doesn't lash out, or hurt himself like he used to, but he gets very emotional and screams and cries.  His overwhelming behavior might not be apparent until later that night or the next day.  His mind can only take so much stimulation and once it hits maximum capacity he spins downward.  He goes into manic behaviors especially at night.  He can't fall asleep, he talks very fast and in gibberish, he cries, and can get physically violent.  It is very hard to watch.  This is why we have to be careful as parents to pick and choose what activities we do around the holidays.  We want Max to be involved but not at his expense.  

Children and teens having a manic episode may:

• Feel very happy or act silly in a way that's unusual
• Have a very short temper
• Talk really fast about a lot of different things
• Have trouble sleeping but not feel tired
• Have trouble staying focused
• Do risky things.

This year Max had two packed days.  Between his classroom party and then trick-or-treating on Saturday with his cousins Max was done.  Saturday night he was up until 2am and mad at the world.  Will and I knew this would happen, and we prepared for it.  But finally on Sunday his body crashed.  He wanted to do nothing but sit and watch his i-pad.  Which we let him.  He needed his brain to relax.  He needed to re-focus.  It is all about balance and being okay with taking a day (or even two) to regroup.  And yes, that means Max has a lot of "screen" time, and yes we are okay with this.  

 

 We are learning on step at a time.  

 

This year the boys were Mario Brothers.  It was a perfect, simple, cotton costume.  

 

Past costumes:

Max's First Halloween:

 

   

It's a Horse!

Last week Max's preschool class went to Farm Country. A field trip with 12 preschool kids on the spectrum is like herding cats (cats with serious sensitivities to light, sound, and crowds that can easily overstimulate them and make them behave unpredictably.) So it's pretty important to have at least 147 parent volunteers on hand. I was there. It was fun.

Max was very much excited to go to Farm Country. In school they had been learning all about farm animals for weeks. At least, I assume so; Max came home singing E-I-E-I-O every day. He doesn't have a lot of vocabulary to work with, so when new words show up it's easy to notice. 

We went to Farm Country as a family about a year ago, before Max was attending Giant Steps (his special needs ASD preschool.) A year ago, Max wandered around Farm Country, not engaging with his environment, constantly trying to run away, and hardly even noticing the animals. He could have been in a dirt field, full of weeds and his reaction would have been about the same.

But this time he couldn't wait to see everything and to name it as loudly and energetically as he could. The first animal he saw was a huge, black horse. This particular horse is right up front and has a sign that says "Please pet me." Max's saw him and ran right to him. "It's a horse!" he said. "It's a horse! It's a horse! It's a horse! It's a horse! It's a horse! It's a horse It's a horse!"

And Max actually reached out to pet the friendly animal. I was so proud of him. Honestly I got a bit misty.

Progress is progress no matter how small.

-Will (the dad)

Give me the tools

When I was in Junior High my Dad built a large wood soccer kick board in our back yard.  I grew up in rural New Jersey and we had a good amount of yard space to practice any sport we were playing.  This wood back board became a tool to help me develop the skills I needed in the various sports I played.  I vividly remember throwing and catching lacrosse balls using the back board.  I remember playing one-on-one matches with my dad using the back-board as my goal.  It was a resource which I used to help me improve.  It also was a way to bond my Dad and I.  We spent hours outside together.  We would talk about sports, school, my dad would give me advice, and I would tell him goals I had for the future.  The simple tool of a back board was a special connection with my dad. 

My back yard in New Jersey.

When Max was born I was so nervous to be a mom.  I loved him with all my heart and soul, but I didn't know what I was doing.  Parenting was something new, and it was something I didn't go to school for.  I read books on parenting, on sleeping, on nursing and having a happy well adjusted baby.  But when Max started not hitting basic milestones, was socially behind his peers, and I was unable to connect with him I didn't feel like a good parent.  I failed.  I was failing my child.  I wasn't doing something right.  Max would spend hours screaming all day, would physically hurt himself, and was unable to communicate.  As much as I wanted to understand, I didn't.  I was frustrated, depressed, and worried that I was not a good mom. 

Then a miracle happened.  We talked to our pediatrician and explain the things we have been observing with Max.  He comforted us and told us there is help.  He also told us that we were not bad parents, but instead we are parents of a special child who is going to need our help to navigate through life.  At age 2.5 Max was diagnosed with Autism.  This was a year and a half ago. And since then I have been gathering tools that allow me to enter his world.  The diagnosis WAS NOT the end of the world, it was the beginning of a brand new one.  It was a world that I am so lucky to be a part of.  Autism has helped me reach both my children.  It has helped me be a better mother, wife and teacher.  

Max has been the best guide in the world.  He is a fantastic example of unconditional love, kindness, stubbornness, and devotion to his love for life.  He struggles, we all do.  But at least now he has parents who have tools to help him be successful!  Having two children with Autism gives us even more tools because what we have learned works with Max might not work with Dexter.  We have to be constantly learning. 

Autism isn't a label for my family, it is a tool, a guide, and a world that connects me to my boys. 

iPads and Autism

Hi, it's the dad again. My name is Will.

------------------------------

It's not a secret that tablet computers are great learning tools for kids with ASD. It's been reported on many times. There are even really boring scholarly articles written about it.

I want to give a shout out to some of the best learning apps I've come across. Max and Dexter both love these apps. You should check them out for your kids wether they are on the spectrum or not. Really good stuff here.

Endless Alphabet: I can't say enough about how great this app is. It teaches letters and vocabulary. It is beautifully designed and animated. And it has TONS of personality and fun. Endless Alphabet, Endless Reader, Endless Numbers, Endless Word Play. Get them all. Seriously.

Loopimal: This one teaches cause and effect relationships. And it's crazy fun. I'll even play with it sometimes. It's kind of brilliant.

Sago Mini Space Explorer: There are a whole bunch great of apps made by Sago Mini but my kids' favorite is the Space Explorer. They can be a bit pricey but if you watch you can find them on sale or in discount bundles. A lot of people would say that these apps are "just for fun" and aren't really "educational." But those people are dumb and don't understand just how important fun is in the life of a child.

These apps are great for any young child really. Check them out.

Potty Training - a pain in the butt.

I loath potty training. 
I don't hate a lot of things, but potty trianing is high on my list. 
Luckily I have a very patient husband who has been relentless this summer. 

Max doesn't have a "treat" he likes.  He actualy has made a drastic turn for the worse when it comes to food.  He only drinks his meals.  (Another post about food at a later time)

Potty training has been rought for Max.  And for Mom.  It stressed us both out. 
He doesn't really sense he has to go.  He needed a pattern.  I was still working during the year and felt like I wasn't a big help at all.  I felt really guilty about that.  
We started at school. His teachers were amazing and got him on a great potty schedule.  And once he mastered school we really started working on potty training at home.  We tried to have him on a schedule, we tried to use a sticker system, we tried so many things, but nothing worked.  We were all getting frustrated and upset.  So we stopped.  That was in the beginning of June. 

Max then went to summer camp at Giant Steps two days a week.  And there again, he had accident free days. So we knew he could do it at home. 
Max LOVES trucks and toys.  At school if they have a good work session he gets to have his special toys for a lotted amount of time.  We thought, could this system work at home? 

And then magic happened. 
We bought him the toy he has been wanting.  A rescue bot.  (We actually bought him the wrong one...but Poppi is going to be the hero and send us the correct one!)
Everytime Max is successful using the potty #1 or #2 we allow him to play with his Rescue Bot for 10 minutes.  We set a timer and when it goes off, the toy goes away.  I was reluctant.  I know, negative Mommy moments.  But it worked!  And he put the toy away. 
This has worked every single time.  He even tries to force pee out just to play. He also wants the Rescue Bot show on while playing with his toy.

*The real success story:
Today we were gone at a doctor's appointment for Dexter for 4 hours.  When we came home Max came in the house, he ran to the potty, went and then wanted his Rescue Bot.  Miracles do happen. 

Now, he still wears a diaper at night and in the car.  But, progress is progress no matter how small. 
And we couldn't be prouder of our cute little underware wearing boy! 

Castle Trucks

Hi, it's the dad here. My name is Will. Nice to meet you.

-----------------------------

One of the things I have had to learn with Max is how to enter his world. One of the best ways to do this is just through play. We've been on a LEGO/DUPLO kick lately so we build them a lot.

A LOT.

But we don't build just anything with our highly-sophisticated-interlocking-brick-system. We build trucks. Big trucks with 5 separate sets of wheels. And bulldozer, airplane, and firetruck parts. We call them castle trucks.

It's awesome. Max, Dexter and I all love it. And it helps us connect.

Triggers for Autism

Autism is complicated.  Every child is different.  Every situation for every child is different.  It is unpredictable.  There are definite triggers that can be seen and hopefully be used to prevent major meltdowns. 

The following chart is the best I have seen to visually illustrate the triggers that can set off a child with Autism and SPD (Sensory Process Disorder):

http://www.potsot.com/infographic-triggers-of-behavior-for-children-with-autism-and-spd.html

Some triggers for Max are unfamiliar places with people he doesn't know.  Max has high social anxiety, and hates walking into a new room of people.  Max doesn't like clothes at all.  He would rather be naked with a diaper all day.  He likes soft cotton only.  He doesn't like anything tight on his body, or anything with tags.  Max doesn't like loud noises that come from random places.  He can hear better than anyone I know, so when there are a lot of noises coming from multiple venues he gets very agitated.  This is why a bowling alley, fireworks, large parties, etc. are so overstimulating and hard for Max.

We try our hardest to anticipate meltdowns and what environments will be overstimulating.  But we also want Max to experience the world.  We want him to try new things even if it does cause a meltdown.  We also want to make sure he learns how to manage meltdowns.  So if we are out somewhere are you hear a screaming child, just remember they could be in the middle of a major Autism meltdown and be kind to the parent and child.  In general, be kind to one another.  

Anxiety and Therapy Animals

I am an overly anxious person.  I am not afraid to admit that I take medication for my anxiety and have for years.  It helps me sleep and be a happier person overall. 

I never realized how anxiety can effect a child.  Especially when a child can't vocalize what they are feeling.  Max's anxiety has gone up a lot in the last six months.  It is effecting his school performance, and also how he reacts at home.  Autism and anxiety actually go hand in hand, so does ADHD, ADD, and Sensory Processing Disorder.  This is not saying that if you have one you have them all, it is just common that with Autism another side effect could be one of them. 

I love how it is explained in this article from Autism Speaks:
Children with autism express anxiety or nervousness in many of the same ways as typically developing children do. We often see separation anxiety, for example, when children must part with trusted parents or caregivers to go to school or camp. Many children worry and become preoccupied with challenges such as homework, friends or health issues. These issues commonly affect both children with and without autism. However, social anxiety – or a fear of new people and social situations – is especially common among kids with autism.
If your child suffers from anxiety, he may experience strong internal sensations of tension. This can include a racing heart, muscular tensions, sweating and stomachache. Intense anxiety can result in repetitive behaviors that appear to serve no function, such as shredding paper or clothing.
Of course individuals with ASD often have trouble communicating verbally. So outward manifestations of anxiety may be the only clue that something is bothering them. Some researchers also suspect that outward, physical symptoms of anxiety may be especially prominent among those with ASD.

I do a lot of research daily and read as much as I can about Autism.  It is fascinating to me.  I know as a mother and also a teacher it really helps me to be informed and to learn as much as I can so that I can best care for my child.  A few months ago Autism Speaks had a article about how animals help with Autism and Anxiety.  (This is the original article I read via Huffington Post) I talked to Will about the idea of getting a pet for Max.  We have fish, and to be honest, they are boring.  Max hasn't bonded over them.  He has put things in the fish tank a few times to "share" but they don't really do anything for his anxiety.  I started looking into a kitten.  I wanted something that was for Max, that we could help him learn with, that he could help care for, and could be an instant friend.  Therapy animals also help with social skills and making friends. 
I read a lot about therapy animals, specifically cats, talked to other mom's about animals and having a therapy animal in our condo, and felt so good about it.  Will and I talked to Will's parents, and they agreed that it would be okay for us to have a kitten for Max. 

Three weeks ago one of our friends posted on facebook that they just had a new litter of kittens.  It was perfect timing.  And I fell in love with a white and gray kitty they posted a picture of!  Will and I set up a time to come look at the kittens, and the very next day we brought home our kitty home.

Introducing:  The Magnificent Marvelous Mad Madam Mim.  We call her Mim for short. She is named after one of our favorite villains in Sword in the Stone. 

She is so tiny, has the cutest little nose and little kitten meow.  She is very loved.  Max adores her and has since she was introduced to him. 

The first night she was with us she snuggled up to Max and went to sleep next to him. 

When Max gets up in the morning Mim is the first person he looks for, when he gets home from school Mim is the only thing he cares about, and at school his teacher told us all week Mim has been a very popular topic of conversation.  He calls her "My kitty Mim" and I am really excited to see how much she helps our whole family. 

 He has even shared Gerald with her.  That means it is true love. 

Other interesting articles about Therapy animals not only for Autism for specifically for Anxiety:
http://anxietyfreechild.com/animal-assisted-therapy-can-help-kids-with-anxiety-depression/

http://www.anxietysupportnetwork.com/articles/how_pets_are_powerful_anxiety_reducers.php

http://www.nlm.nih.gov/medlineplus/news/fullstory_152699.html