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.

A small adjustment with huge results.

When something clicks it is the happiest of happiest. 
Max started his new medication about 6 weeks ago.  It took us 4 weeks to notice a difference.  It took us all 6 weeks to realize how something so small could help in a big way. 

Max hasn't been manic at night.  He is on a mood stabilizer so we were hoping the manic behaviors would calm down, and they did!  He is happier at school.  He has been moving through his programs with greater ease.  The biggest thing we have noticed is that his anxiety has decreased.  We are getting really positive feedback at school from his teachers, and it makes me so happy. 

Max has started really loving being surrounded by anything.  Tight, small spaces are his favorite.  This picture is at school. 

"He was very happy."

"Max did great at focusing!" 

 Max still has all his quirks and still has hard days, but they are not for hours upon hours all day every day.  The other night BOTH boys were asleep at 10pm and Will and I found ourselves able to watch Flip or Flop without interruption!  It was amazing. 

Will and I realize medication isn't for everyone.  But we needed to help Max.  And for us this has been an answer to a lot of prayers. 

Now if we could only convince Dexter to sleep in longer stretches things would be pretty perfect. 

If only...

Every Child is Different

Every single child is different. 
They learn different. 
They each have unique qualities that make their individual personalities. 
They react to situations differently.
And over the past four years of being a mom I have learned that both of my children are as different as they come. 
But one thing is for certain they both crave love.  They want to be understood and loved.  And it is my hope that Will and I are doing that for both of them. 

When Dexter was born two years ago both Will and I knew Max and Dexter would have a close bond.  Will witnessed one of the cutest events when Dexter was just a day old.  Dexter had some breathing issues at birth and was in the nursery receiving oxygen.  When Max came to the hospital to meet Dexter, Will went to the nursery to get him.  Will leaned into Dexter's bassinet and said "Time to go meet your brother."  And Dexter smiled big and proud.  He knew how much he already loved him.  Max at the time wasn't expressing many emotions but as soon as Dexter was brought in the room Max put all his cars straight into his bassinet.  Brotherly love is deep with these two!

Dexter has had sleeping issues since birth.  And we have seen so many specialist and had so much advice given to us about sleep.  I have followed my mommy gut on a lot of decisions.  We as a family do not believe in the cry it out method.  Plus Dexter was physically hurting himself at night if he was left to scream and cry.  He would go into full panic mode, and has had many bruises to prove it.  He has never slept through the night and wakes up anywhere between 3-8 times.   
Dexter still nurses and that really has been a blessing.  It is the only thing that calms him.  And on really bad nights even nursing won't settle him down. 

Dexter also has sensitivity to noise.  Especially deep noises, or loud pitches.  This past weekend we were in Salt Lake with my Dad and we ate at Kneeders.  Every once in a while a high pitch beep would be heard from the kitchen.  Dexter would whimper and cover his ears. 

Dexter is very smart.  I know, I know I am his mom but I have never met another 2 year old that knows the alphabet upper and lower case, his numbers 1-20 (can say them and recognize them) and has now started to realize that letters form words.  He has known his letters since about 18 months or even earlier.  It has become a huge obsession just like Max's obsession with trains and wheels. 

About nine months ago we started noticing some concerning signs with Dexter.  Some were the same that we saw with Max and some were very different.  We talked to Max's teacher and also to our pediatrician and determinded that we needed to get him evaluated for Autism and Anxiety disorder.  The process has changed in the past 18 months because of insurance companies taking a more active roll in Autism treatments, which is a good thing, but makes the process long.

This past Monday we went to our final meeting with our case worker and psychiatrist.  And it was determined from all the testing we have done over the past few months that Dexter has a speech delay, Sensory Processing Disorder (SPD), anxiety disorder, and has Autism Spectrum Disorder. This was not a shock to Will or I, but it is still a diagnosis you don't wish upon your child.  We are prepared for the life that this means for our family with two special needs children. We have already started fighting for Dexter just like we do for Max.

 

We are very grateful for our family and friends who love, support, and listen to us on the hard days.  Thank you.  It truly takes a village.  

Conquering fears

Last summer when my Dad came to visit we went to Park City and decided to give the Alpine Coaster a try.  We thought Max would love it because it is a car/train that you get to ride in.  Little did we know that after waiting in a line for 90 minutes Max would panic once it was his turn for a ride.  You can read about that experience here. 

This past weekend was a whole different story.  My dad came to visit and we again went to Park City to see if Max would try the Alpine slide and then the Alpine Coaster.  We had no expectations, we just knew once he got on he would love the whole experience.  His brother Dexter is a dare devil and we knew he would want to ride everything also. 

We went on a weekday and during school hours so the park wasn't crowded.  We did the Alpine Slide first.  We road the ski lifts up to the top of the mountain.  Max did GREAT on the ski lift.  He was excited and kept saying "so high" and "look train!"

The Alpine Slide was a huge hit.  I think I was more nervous than Max was.  He sang "Mickey Mouse Road Rally" the whole way down at the top of his lungs.  Will and I were singing along and cracking up. Max was so happy and had no care in the world.  It was awesome!

When we got to the bottom Max immediately wanted to "do it again!" This time we bought tickets for the Alpine Coaster.  This was the same ride that last year he was scared and didn't want ride.  The line was short.  It was only about a 30 minute wait.  When we got to the front of the line we asked Max what color car he wanted to sit in.  He said blue.  Then we asked who he wanted to ride with?  He said "Ride with Poppi!"  I had tears in my eyes, I was so proud of him.  We all rode the coaster, and the whole time my dad said Max was saying "Poppi go faster!"  When the ride was done he screamed "That was AMAZING!"  I didn't even know he knew that word. 

I realize that him being scared is more of an age thing rather than an Autism issue.  I know that being scared is a normal life feeling.  But the fact that he is feeling is what makes this whole event so special.  He is recognizing his own feelings.  He knows when he is excited, happy, and scared and more importantly can express these feelings.  Expressive language is something that children on the autism spectrum really struggle with.  They need to be taught how to appropriately express feelings and not just tantrum or scream.  Max made me so proud this past weekend.  And I can't wait to ride the coaster again!

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! 

Heartfelt Mom Post - Being kind to one another

This weekend was hard.
Friday Max went on a wonderful field trip to the Natural Curiosity Museum in Lehi, Utah.  It was really fun for our family and he had a blast. 

The museum is loud, has a lot of lights, sounds, colors, and even though he had a great time I knew the rest of the day was going to be hard.  His brain was on overdrive.  He was overstimulated and overwhelmed.  One thing after another made him panic, cry, tantrum, and get upset.  He destroyed his bedroom, smeared poop on the walls (I will spare you the picture) and crashed by 7pm. 

Being overstimulated is something that Max deals with on a regular basis.  He has some coping methods, but he almost 4, not almost 12.  When he is really overwhelmed he flaps his arms, hits his head, screams, cries, and acts out.  Will and I try our best to prepare him for a situation, but there is no way we can predict how he will react. 

This is a GREAT video that shows what sensory overload is like. 
https://www.youtube.com/watch?v=IcS2VUoe12M

Church is very hard for him.  He does well in small groups, but the large sacrament meeting, with sounds coming from everywhere, bright lights, and a lot of people his senses are on overdrive.  Just imagine closing your eyes in a large room.  There are sounds everywhere, feet moving on the floor, people talking, shifting of body parts, the building cracks and noises, etc.  Max hears and sees everything, and it is all very hard on his brain. If he gets to overwhelmed he then either acts out, cries, runs away,  physically hurts himself or others, or tries his best to use coping skills to deal with the situation. This is what Autism looks like.  This is what Max deals with daily. 

So if you see us at church or any social event it might look like this: playing with trains (toys), he might be laying on the floor watching the wheels to calm himself, letting him jump up and down, spin in circles in the doorway or hallway of a building, letting him play on the iphone or ipad, allowing him to use his voice to tell us what is wrong.  He might repeat the same thing over and over and get louder and louder, and of course we will explain to him what is appropriate for the situation but we can't predict his outbursts.  He might hit his head with his hands, or run from us even after calling his name over and over.  This is all normal. These things are not an indication of our lack of parenting, this is us trying to help our child cope with the world.  Because his world can be lonely, scary, and really hard.

Yesterday I put on my facebook:  Be kind to one another. Judging hurts at any age and in any situation.

On the outside Max looks like a typical (almost) 4 year old.  He is taller than his peers.   He is now in the 100% for height and the 80% for weight.  He wears boys clothes not toddler clothes anymore. He is expect to communicate like a 4 or 5 year old.  But he is about 2 years behind those of his peers.  People stare at him, and that is okay, he doesn't notice for now.  But he will.  And Will and I notice, we notice the whispers, and the faces of those who are judging the way my child is acting.  Will and I have heard it all, we have watched adults and children laugh at Max.  It hurts.  Max one day will notice, and we will be there to love and support him.  To tell him how special he is, how smart he is, and how lucky he is to have so many people who DO support him.  I know we have so many who support us, who care for us, and pray for our family, but that doesn't take the hurt of that one judgmental comment away.  Will and I are human, trying to be super heroes to both our special boys. 

Our parenting style has to be different, it has to look different, and that is okay.  Just because we are doing things our way doesn't make it wrong. Max has taught me to be more compassionate, to care more, to be more understanding of all people.  I adore him and his unique traits.  I have learned more about trains, firetrucks, Pocoyo, and construction sites than I ever thought possible.  I have also learned how valuable friendships are and how important it is to have a village to help raise a child. 

Life isn't Typical for our Family - Dexter Update

The one thing I wanted to accomplish by having a blog for Max was to be a advocate for early intervention. Your child's Well-Check-Ups are so important and being completely honest with your child's doctor. I used to hate filling out the questionnaires for Max because he wasn't meeting hardly any of the age appropriate milestones. I will admit that a few times the right answer was not what I admitted too. I wanted to have a typical child. But what I have learned is nothing is typical.

Because of early intervention, our pediatrician and being an advocate for Max we have been able to help him strive. We have found a preschool that we all adore with a community of parents that all want the best for their Autistic children. 

The reason Well-Check-Ups are so important because they help monitor progress. Max started really having Autistic symptoms that were very noticeable at age two. And this is common. As children with autism develop their symptoms become more prevalent.  And in some cases Autistic Signs might not even be seen until 2 or 3 years.  They could even have typical development but then start to loose them. This would include communication skills, motor skills, and the ability to be self aware. (Being self aware for example is seeing emotions in others like being sad, happy, mad, responding to your name, being able to self sooth, etc)  That is what happened with Max.  He lost words, and the ability to communicate and then stopped making sounds or hand gestures all together around age 2. 

Max is about 20-24 months behind his peers. His communication skills and self awareness is something that is developing at a slower rate. And that is okay. Progress is progress. 

Dexter (Max's brother) is now 21 months. He will turn two in July. 

 

Dexter has been slower to develop in the communication and gross motor area but it wasn't a worry for me. Dexter also has great eye contact and has since birth. Dexter loves to smile just like Max does and is generally a very happy toddler. 

Around Halloween last year (2014) we started slowly noticing things that worried us.  They were subtle at first but then over time they became more and more concerning.  We talked with his doctor and we were told to watch him, document specific concerns and even take video of our concerns, then if needed contact the early intervention program we used with Max. We also spoke with Max's teachers and expressed our concerns. Dexter is currently seeing an early intervention specialist for speech and Occupational Therapy (OT).  Things have been changing for Dexter and in the future I expect him to need some TLC just like Max.  But for now we are doing all that we can at his age to help him communicate and develop.

Dexter has never slept through the night. His longest stretch since birth has been 4 hours. He panics, screams, gets a rapid heart beat, hits his head against the wall and has major anxiety.  He has been making himself so upset that he throws up.  It is very scary to experience, and make me feel so helpless. The only this that calms him is breastfeeding. So yes I am still breastfeeding my 21 month old. Sleep has progressively gotten worse along with other concerning signs that something with Dexter isn't right. Will and I are so grateful that we have some knowledge to understand what to look for and where to go for help. As of right now prayers that we are lead in the right direction for Dexter and for our whole family would be greatly appreciated. 

Will have some hunches and gut feelings about what is going on but until we know for sure and have a family plan we want to stay positive and do what is best for Dexter. 

A rare occurrence that only last 10 minutes but it was a peaceful ten minutes.

For now we are working with Max's amazing team of teachers, our pediatrician and other people to help us with Dexter. Sleep is so important. But finding out the cause is also another piece to the puzzle. My family means the world to me. We have our struggles and our life isn't typical. I might only be getting 2-4 hours of sleep a night but right now I wouldn't have it any other way. 

 

Improving language skills

A year ago Max was official diagnosed with Autism.  He hardly spoke, but instead would cry and tantrum.  He didn't have more than 10 total words he used on a weekly basis.  He didn't have any words linked together and had a severe language delay.  Max has really had a major improvement with his language this last month.  He is starting to talk on his own without being prompted.  He has his own thoughts and remembers what he has said for future conversations. He isn't caught up to people his own age by any means, but he is making amazing progress.  And progress is progress. 
Max's conversations are 4-5 words and might even have multiple topics but he is trying on his own.  As his ability to communicate has improved his tantrums and frustrations has drastically decreased.  His understanding of the world he lives in has also increased.  He has a schedule, he has ways to cope when he gets overwhelmed and over stimulated, and he has people in his daily life that he trusts and are his safety net.

What our family is loving the most right now is how much he sings!  He sings songs he has memorized while he playing trains, while taking a bath, in the car, even at school while at recess or during a break.  It makes me so happy to know he feels comfortable using his voice.  His memorization skills are astounding.  Singing has really helped his vocabulary and speaking voice. 

The video below is Max helping Will and I sing "I am a Child of God."  It made me tear up and also make me realize how far we have come in just one year.  The next video is Max singing to the Sesame Street with no prompting. Just playing trains and singing. 

Be an advocate

Ever since I can remember I have wanted to be a teacher.  I was still playing school secretly in my room in 8th grade.  I would organize grade books, make lesson plans, and even grade fake papers.  When I got to college and started to take developmental psychology classes I was convinced I wanted to teach early elementary students.  Boy was I wrong.  I adore 6th grade.  I love ages 11-12.
Fast forward 10 years and I still enjoy the hormonal 12 year old students.  They have taught me so much about my own life and I am very grateful that I am a teacher.  Teaching and understanding education has really helped me be a better mother to Max and Dexter.  I feel like Heavenly Father knew I would need this important career to help my own family. 

On Tuesday nights Will and I attend parent training for Giant Steps.  These training have been very helpful and have allowed Will and I to make connections and friends with other parents in the program.  There is about an hour presentation on many different topics and then after we get into small groups and discuss anything that we need help with.  We have been given a lot of good advice especially with eating, potty training, and dealing with meltdowns.

He tried it once, and never has liked it since. 

This past Tuesday the topic was IEP's and 504's.

What is an IEP?
An Individualized Education Program (IEP) is a written education plan designed to meet a child's learning needs.

What is a 504?
The 504 Plan is a plan developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives accommodations that will ensure their academic success and access to the learning environment.

IEP's are for education and learning, 504's are for typically behavior.  Behaviors don't have to be negative.  If a child has high test anxiety a 504 can be written so that they are given extra time on tests, can be tested in a separate room, can have multiple breaks during a test etc.  I have seen so much good come from a 504.  The allow the student to reach the curriculum and help them be successful.

A TEAM helps your child.  And as your child's parent you are a part of their team.  If you are noticing something at home please inform the teacher, allow them to be a part of your life.  Good teachers want to know the WHOLE child, not just if they are passing math or not.  Good teachers want to know if the family dog dies, or if your child has been waking up 8-10 times a night and not sleeping well.  These things effect their education.  After an IEP is made you can meet with the IEP team whenever needed.  It isn't set in stone that the meeting only has to be once a year.  That is just a guideline.

When you meet to go make an IEP or 504 PLEASE be your child's advocate.  Make your feelings and opinions known.  Make sure you understand what your child is going to be working on at school.  Make sure you understand your rights as a parent.  This is so important not just for those children who are autistic or have disabilities, but for all students.  School is such a huge part of life, it is already stressful for the whole family.  If something isn't working, switch it, if you need something changed, change it, and if you are not getting answers from your child's teacher go elsewhere. 

 

This is something that I am very passionate about and this post hopefully shows that.  I love teaching, I love education, I love learning about each one of my students.  Max is very lucky to have teachers who feel the same.  I know he is getting a whole education, and I am hopeful that this will continue.   

Potty Training - just the beginning.

Potty Training is something I have been dreading.  It is something that has given me anxiety.  But with the confidence from Max's teacher last week we started the process.  And it is a process. We started January 29th and here is our 9 day story.  

Max doesn't really feel when he has to go to the bathroom, so we have to help him.  The first day was baptism by fire.  He went to school in diapers, and as soon as he arrived his Thomas the Train Underwear were on.  He had no successes that first day.  None.  He cried when he had to be placed on the potty and came home from school very upset. 
I had 5 pairs of pants to wash and lots of dirty underwear. 

At school Max is asked every 5 minutes if he has to use the toilet.  Then every 30 minutes they put him on the potty.  I can tell you the first few days were very rough.  Max hated being at school.  It was hard.  He would cry a lot.  But then, last week I got a text from his teacher that simple said "WE HAVE A SUCCESS!"  He went.  The happy dance was done by everyone in his classroom and he was happy at school.  And then he didn't go again for a few days.  He was getting really stressed out.  Over the weekend he cried and was having so many tantrums.  So on Sunday I said "Diapers!  Just put one on!"  And that is what we did.  And Max slept, and all was right again with the world. 

But then we started again on Tuesday this past week.  He does much better at school.  He has improved over the week.  He started with 4-5 accidents a day, and today he came home with only one pair of dirty pants.  At home it is harder.  He hasn't gone for us yet.  But we still try to follow the same routine at home.  At night he wears pull-ups with underwear over them.  And if we go out we do the same.  He LOVES his underwear, so we put them right over the diaper. 

Rewards:  Because Max doesn't eat candy, chocolate, cake, cupcakes, or cookies this hard been harder.  He will lick dum-dums, and at school Gerald is his reward.  If he has a success he gets five minutes of Gerald time.  He is allowed to play with trains while he sits on the potty, and we are overly excited when he has a success.   At home we let him sit on the potty with the ipad.  He doesn't really understand stickers or a chart, and because of his sensory issues we don't feel like it is fair for him to have to clean up his own mess.  Maybe when he is older? We have had so many good suggestions given to us, and we appreciate them.  We are not trying to rush him, or give him more anxiety, we want him to be successful. 

But until then, Max sure looks adorable in his little boy undies!

And yes, that is the potty in our living room.  We will try anything.  Anything. 

9 Days in...February 6th...
Say some potty prayers for Max. 

KUTV-2 News Story on Giant Steps

Here is the link for the news story that was done tonight on KUTV-2:
I will have more information soon about the Auction.
I am so proud to be a part of Giant Steps Preschool. I am so proud of our family.
Max is growing and learning, what more can I ask for? 

http://www.kutv.com/news/features/top-stories/stories/For-those-who-can-get-enrolled-program-making-giant-steps-for-families-facing-autism-71995.shtml#.VMmv8naEotw

"Max has found a voice at Giant Steps, you can see it in his eyes."  -Poppi.

No shoes, no shirt, no problem?!

Max hates wearing pants, or clothes at all for that matter right now.  He likes to be free, and just in a diaper.  He even sleeps just in a diaper.  And it has been cold in Utah!

He is three and a half, and we have been told that it is a toddler thing.  Or is it?
No clothes, no problem, right?

The problem is that he doesn't feel cold. (Or hot for that matter)  Just like his taste buds are super sensitive and he tastes flavors very intensely.  His sense of cold and hot are also heightened.  We talked to his teacher about this and she believes that Max doesn't have a sense of cold.  So why should he have to wear clothes if he isn't cold?  His hands will turn bright red in the snow, but he doesn't care or complain.  His brother on the other hand, cries at the first sign of cold snow.
  
SENSORY PROBLEMS AND AUTISM
Sensory experiences that parents don't even notice may be extremely frightening or unpleasant for a child - the feel of a certain fabric, sounds of certain frequency, particular colors or seemingly bland foods. The child's reactions can easily be interpreted as wilful misbehavior. Along with this will frequently be difficulties in movement, coordination and sensing where one's body is in a given space, leading to clumsiness and difficulty with tasks such as dressing. (From http://www.autism-help.org)

Max does recognize hot things.  And when he sees the oven on, or the stove, or a fire on the TV he says "Firetruck" and "hot"!  Firetrucks are always involved when it is hot.  Just like when someone gets hurt he says "Ambulance"!

So what do we do?  We allow him to help pick out his clothes.  We don't fight him.  Pick your battles, especially inside the house.  But clothes are a must when he goes outside, or to school.  He wears very soft cotton, nothing with tags or anything that itches.  His shoes are the same for everything.  He wears the same shoes to school as he does for church.  He understands they are his shoes and doesn't argue.  He doesn't like socks at all.  As soon as we come in the house he says "Shoes, socks, off" and lifts up his foot.   We try to dress him right in the morning, we have a better chance of him keeping clothes on during the day this way.  But this is hit or miss too.

So if you see a naked toddler running around Provo he most likely isn't cold.  He is just perfect. 

How big is a crowd?

Will and I have always noticed Max hates crowds, large gatherings and events with a lot of noise. 
His first birthday was loud, the singing made him cry, there were way to many people, and all the attention was on him.  Disaster. 
Last year on the Fourth of July Max was really shaken up by the fireworks, the loud noise, and all the lights.  We learned our lesson.  He doesn't like surprises.  He doesn't like when he doesn't know people in big crowds.  This has actually gotten worse as he gets older. 
Holidays are hard.  He knows something exciting is happening.  He knows there is an increased excitement, and that overwhelms him instead of making him excited.  Most kids would find excitement in the different schedule, the anticipation of a party or family gathering.  It gives Max extreme anxiety.  Most of the time at a party you will find Max playing by himself in a room where it is quiet. 
A few weeks ago we went to a good friends house for their sweet daughters first birthday party.  Max knew most of the people there.  But it was a new house and it was loud for Max.  They had a great play room that was off to the side and Max stayed there the whole time.  He doesn't eat cake, so to him he didn't miss anything. 
Max likes routine.  He likes Gerald to be close by.  He likes to know his blankets are near.  He likes being home.  He likes his cars, trains and trucks.  He is very particular with how he eats and how he drinks his milk and apple juice.  He has OCD tendencies and gets very overwhelmed and upset when something isn't part of the normal routine. 

Gerald, Blanket, and Mickey Blanket.

Max likes driving in the car.  He likes being in his car seat.  It is tight and safe.  He could drive around for hours.  He loves pointing out all the trucks on the highway.  It is familiar and safe.  We actually have started taking him for drives when the day has been hard.  

The focus is astounding. 

 Things we have learned that help Max:
-If we are going somewhere new we will let the people know that we might not be able to stay long, or even make it into the house.  Most people have been very understanding and have offered help when needed. 
-We talk to those who are at the party and let them know that Max will most likely be on his own planet, but he is okay and he isn't trying to be rude.  He is trying to figure out how to make himself feel comfortable. 
-We bring Gerald and Blankets to all new places.
-We always have a cup of chocolate milk or apple juice. 
-Talking to Max a few days in advance about what will happen does help.  For example we watched Curious George Halloween everyday for the whole month of October so Max would understand Halloween.  And it worked for the trick or treating part, which we thought was actually going to be the hardest part of the day. 
-We now can notice signs of him being overwhelmed before he gets to the tantrum, out of control, crying behaviors.  And when we notice these signs we leave, or remove him from the activity, place we are at, etc. 
-We avoid certain stores, times of the day to go out, and places where a lot of people are gathered.  Max loves walking around the mall but doesn't like it when it is crowded.  So we go during the day, when it is almost empty. 

We adjust.  We learn.  Sometimes we are shocked at how good he is handling a situation, and other times we realize that we made a mistake and shouldn't have brought Max into an environment that worries him, or gives him anxiety.  

And we laugh.  A lot.  Because Max is learning how to be himself, with all his quirks, and it is funny.

One Singular Sensation.

Good Luck Max!

Max started Pre-School today.
We tried to get pictures, but he heard "car, school, go!" and wanted nothing to do with pictures.
So we caught a few going down the stairs.
A few college students passing said "awe cute!"  And I agree he was pretty cute walking all grow-up with his backpack pack on.
I am feeling so blessed to have a pre-school like Sunrise so close to our condo.  I am so lucky to have teachers who know how to teach a child with Autism.  I am one lucky Mom.

I can't wait to see him after school today!
Here is hoping for a tantrum free school day.

 Love you Max Strong!
You are going to love school this year!

UPDATE:  Will went and picked him up at school because I was a work.  His teacher said that for the first 30 minutes he was on the floor not moving, upset, and mad.  Then after about 30 minutes she said he started to move and play with toys.  She said after that he was fine for the rest of the day.  HE was VERY happy to see Will and the big buses outside after school.
It is going to get better each day.   He is going to get into a routine and I know he is going to love school.
DAY TWO:  This was a rough one.  He was upset going to the car.  He was upset walking in to his classroom and he was upset when I left.  But I had to leave.  His teacher, Mrs. Becky, is darling.  She knows I am a teacher, and she knows I worry.  So she emailed me during my prep time and told me "Max cried for only 5 minutes after you left, drank his juice, and then played with magnets.  He is currently doing great."  This is exactly what I needed to hear.  I know everyday is going to be different, but I know we are doing the right thing by sending him to preschool even on the hard days.  

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.  

A wonderful story - Book recommendation

Will and I just started listening to the book Life Animated and so far it has been an emotional journey for both of us.
Will and I get suggested books to read ALL THE TIME.  And to be honest we just don't have the chance to sit down and read a book.  That would be nice, maybe one day...
But we are in the car a lot, and Will loves audiobooks. 


Here is a summary of the book:
Here’s how this survival story begins. Just shy of his third birthday, a seemingly typical, chatty child became mute. He suddenly didn’t sleep or eat, and cried inconsolably. His only solace: the Disney animated movies he loved before the autism struck. But they had changed, too—they’d become gibberish, because the boy’s ability to understand speech had also vanished. So he memorized them, dozens of them, based on sound alone. What follows are a series of startling breakthroughs, as, for years, the family began to communicate with their lost son in movie dialogue. Recite one line, he’d look you in the eye and recite the next. But was he understanding?

Will and I both have cried in multiple spots.  We have held hands and looked at each other without saying anything, but just understanding each others feelings.  Max is this child.  Max has the same issues.  There are other families just like ours.
Max does the same thing the little boy in the book does.  He memorizes movies.  He recites the lines and talks to the characters.  But when you ask Max about the characters or about a movie scene he won't respond or repeat lines from the movie, he only does this when the movie is playing.  He goes into another world when he watches Winnie the Pooh, Mickey Mouse, Elmo, Perry the Platypus, and Wall-e.  He understands them, and for a split moment he is a typical child, responding, being social, and even repeating words.  But as soon as the show is over the moment is gone.  I am glad Max has characters in his life to connect with.  I am glad there is something that he can communicate with. 
And Will and I feel lucky to have Max and his movies in our life.

Another summary of the book:
In fact, their young son had invented a language to express love and loss, the bonds between brothers, the nature of beauty, and the true meaning of the words “happily ever after.”
At its core, this brilliantly crafted narrative—written by the father, but shaped by his wife and children—isn’t about autism or Disney, though you’ll never view either one quite the same, again. It’s the story of a family’s resilience when their world is turned upside down. It’s about perseverance and hope.
A child disappeared into confusion, frustration, and silence. But deep inside his dark cave of isolation, he and his family began to dig for diamonds, working year by year, trial by trial, on a most improbable project: to find a way each of us can learn to animate our lives.
  

 

Will and I have been looking back at pictures of Max, and we have been talking about things we now notice as "not typical" or "on the spectrum."  I even think in some pictures Max is honestly trying to tell us something isn't right.  I feel so lucky that Will and I both listened to the spirit and started seeking out help for Max.  Max is learning in his own way, through movies, tv shows, and books.  He has friends who are very real to him.  He has his own "Winnie the Pooh" who he talks to and communicates with.  His friends might not be people, and socially he might be far behind other typical boys his age, but he is learning and progressing.  Will and I notice a difference in our family, and it isn't Max who has made a huge change, it is us.  We are allowing Max to be himself, we are allowing him to stay in his world.  Max is slowly entering our world, but we needed to jump into his first. 

I am looking forward to listening to the rest of the book with Will. 

The 4th of July

Will and I are still learning.  Every new activity and adventure we have as a family is a learning experience with Max.  The Fourth of July was nothing different, there were very good moments and then some that we wished we approached differently. 

What went REALLY well:
Max loved the parade.  Especially the fire trucks.  He would jump up and down, wave, yell and scream, and was the happiest kid at the parade.  It was very fun! 
At one point the "Wells Fargo" horses passed and Max said "hi cows" but then cheered the LOUDEST for the poop truck that was following the horses.  I am pretty sure he was the only kid cheering for the poop. 

After the parade instead of trying to go swimming and packing the day with tons of 4th of July activities, we came home.  We let him play with trucks inside and we watched the Lego Movie while Max jumped on the trampoline.  It was perfect, and something he was comfortable with. 

What went WRONG:
We took Max to a night time party at our good friends house.  They live in a great neighborhood and have a party to celebrate the Fourth each year that is called the "Cul-da-sac of Fire"!  There is music, lots of people, fireworks and food.  Everything was going great, we brought Max trucks to play with and food for him to eat.  Then it started to get dark and the fireworks started.  They were popping all over Provo.  He was hearing every sound from all over the Valley.  And because his hearing is very sensitive it started to really overwhelm him.  He started crying and hitting his head with his hands, and pulling his ears.  He hated all of the random noises and was making it known.  He cried a lot even when inside where the fireworks were quiet. 

So even though he has made strides, there are a lot of things that we still need to be cautious of.  Loud noises that he isn't expecting is one of them.  I am grateful to our friends the Merrill's and McGuire's who understood what was going on and went out of their way to help us, it means a lot.  We know there is going to be a lot of situations that Max isn't going to be able to handle, but we are lucky for the situations he handles with ease. 

Max's Third Birthday

Max had a very "Max" birthday.  It was perfect for him.  Quiet and not full of any crazy party.
He played in the dirt.
He got new cars.
He had pasta for dinner.
He had tons of raspberries.
He played with water.

 He LOVES balloons!  Grandma Strong got him a ton.  It was perfect.

It was a perfect day.

And this video made me tear up.  This was the first year we sang Happy Birthday to him with out a meltdown or tantrum.  It was amazing.  We sang soft, we cheered soft, and he was happy.
We are entering his world and he is responding.  He is growing, and we are too.

Happy Birthday Max!  This year is going to be your best yet!

We love you.
~Mom and Dad and Dexter too!

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.