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.

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.  

Autism Awareness: What have I learned in the past year?

Last April 2, 2014 Autism was so new to me.  It was very fresh. I was so lost and confused.  I was heartbroken and very worried about Max's future.  Will and I had little knowledge about Autism and we didn't know how to help our son.  I have over the years as a teacher taught some students on the Autistic Spectrum, but I had never thought about having a child of my own with special needs.  And honestly who does?  How can you prepare for that?

Christmas 2013 - Max was official diagnosed January 2014.

Fast forward a year.  I am still learning everyday.  I want to continue to learn as Max grows and enters different stages of life.  One thing is certain I am more confident as a Autism Mom.  I am not angry or upset, but have the deepest joy and love for Max.  He is amazing just the way he is.  He has led us into his world, and I am so lucky he has.

10 things I have learned in the last year in not particular order:

1.  You have to take suggestions of how to "treat" a child with Autism just like that - a suggestion.  We have been approached by so many people telling us about the latest treatments: Natural oils that cure Autism, do not vaccinate, not allowing him to drink cows milk, taking red dye out of his diet completely, etc.  Some suggestions have been wonderful and we are grateful for them. But we don't use all suggestions because we have to do what we feel is best for our child. 

2.  Vaccinations do NOT cause autism.  It has been proven over and over again.  Then end.

3.  Early intervention is KEY.  I have said this so many times but if you notice something doesn't seem right developmentally with your child or you have a gut feeling that your child isn't thriving socially talk to your pediatrician.  Early intervention can start as early as 18 months.

4.  Find a support group.  I don't know what I would do without friend and family, but sometimes you just need to talk to someone who has a child that is dealing with the same issues your child is.  I love being a part of the Giant Steps community.  I love being able to connect with other Moms to share stories, ask questions, and get advice.

Max's first day at Giant Steps November 2014

5.  Take time for yourself.  Everyone needs a break.  Everyone needs time to be alone and not be in charge.  I go to the gym, I zone out on my ipod, and I watch bad television.  But it helps.

6.  Be honest with your feelings.  There are really tough days.  There are days where Max has had tantrum after tantrum that last anywhere from 5 minutes to 45, didn't sleep the night before, has only had chocolate milk to drink all day, and won't put on anything but a diaper.  Oh and to top it off has watched the same Thomas the Train Episode on repeat.  This is a frustrating day.  And it is okay to be frustrated.  It is okay to cry, to be mad, and upset.  Validate your feelings.

7.  Progress is progress.  Max is about 18 months to 2 years behind his peers.  It is hard to see other friends with children the same age as Max doing things that Max can't do yet.  But on the flip side it is so rewarding to see him accomplish even the littlest thing.  Max is working on full sentences with commands at school right now.  He says "I want choco-milk."  Or "I want bread."  This is huge progress.  Socially Max says "Hi and Bye" and waves to people who are entering a room.  I love progress because it can be little or big but it is moving forward, it is a step in the right direction.

8.  I used to be so scared to take Max out of the house.  I hated taking him anywhere because I didn't want people to stare at him while he was having a tantrum, or crawling on the floor watching the wheels of the shopping cart, or repeating the same word while flapping his hands.  I was embarrassed.  And that was the wrong thinking.  Max isn't embarrassed, he doesn't know any better, and you know what he is happy crawling on the floor.  I needed to change my thinking.  Max deserves the same experiences other kids have, and if that means a few tantrums and people saying something rude or staring at us, so be it.

9.  Talk about your child.  People are curious.  It is human nature.  I am open to telling people Max is Autistic.  I am not trying to excuse a behavior, I am hoping it makes people aware.  People are different.  Children are different.

"Everyone is handed adversity in life. No one's journey is easy. It's how they handle it that makes people unique."

10.  Laugh.  A lot.  Oh do I laugh a lot.  Max has said and done the funniest things.  He makes jokes, and wants to make you smile.  He is a fun kid.  Entering his world as been the BEST decision I have made as a mother.  I love his laugh, and I hope he continues to like mine.

Autism Awareness Month April 2015 - I hope you all Light It Up Blue for Max and for Autism.

Thank you for your love, support, encouraging words, and prayers.  It means so much.
Tiffany Strong

My gut feeling

I think the most asked question I get about Max is "When did you know something was wrong?"  This is a hard question to answer, because it wasn't a specific even but a series of things that made me wonder if my child was "different."

One
His first birthday.  Max was always a very laid back child.  He smiled and was quiet.  But being the center of attention was something he didn't like.  At his first birthday he screamed and cried uncontrollably at the first note of happy birthday.  It took him 15-20 minutes after the song was over to calm down.

This was a blog post from March 2012, when Max was 9 months old:
"Max has started clapping and it is darling.  If you say "Max Clap" he will.  He still doesn't like a whole room of people clapping and I still see him get a sad face during a clapping moment in Elmo's World, but he can clap now and that is what counts. "

Two
Every mother compares.  And even though I was told not to, I still did.  Max wasn't saying words or even sounds at one, or even 18 months.  He wasn't waiving bye-bye or saying hi.
This was a huge indication to me.  But again, even my husband, said he will learn, he is only 18 months.

Three
Nursery.  Watching my little baby stand in a corner and cry was heart wrenching.  He wouldn't interact with the other children, he would flap his hands and hit his hands against his head.  When snack time or singing time came around it was a huge melt down.

Four
The tantrums.  He was physically hurting himself.

Five
I just knew.  I don't know how to explain it, but I knew from the time he was very little that there was something wrong.  But now I know that it isn't a "wrong" but just a different way.  Max just learns different.

Today I went out alone with Max.  He didn't have his Dad, he was on a date just with his Mom.  We held hands, we made three different stops, and we looked at trucks.  He didn't tantrum, he didn't run away, he held my hand.  It was perfect.  My gut isn't hurting like it used to, I feel good about what we are doing for Max.  I feel empowered.  I am Max's Mom.  

I want to emphasize to go and get help if you think something isn't right.  Even if nothing comes of it, go with your gut.  I am going to do a post of the initial tests we filled out for Max and how they confirmed my gut feeling. 

Trampoline Fun

Max is very busy.  Like most two year olds (who are almost three) are.  He constantly wants to be outside, running, moving, and often will tantrum if these activities are not done "right away!"  He will bring us his shoes and all of the shoes he can find to help us "get the hint" that he wants to go out.  He also will bring the stroller and start putting cars in the stroller in hope that someone will take him on a walk.  Sometimes he will even sit very quietly in the stroller just waiting...

About a month ago we decided to buy a mini trampoline.
This was the BEST 40 dollars we have ever spent.
He bounces on it all the time.
He bounces on it watching movies and singing along to his favorite songs.
He gets energy out and he loves it.

This has helped so much with rainy days, and moments when we just can't take him outside to play.

I would suggest this to anyone with a toddler!

In the video below it is Max bouncing on the mini trampoline watching Mario Brothers on You Tube.  You can hear him saying "Mario"!

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: