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. 

It take a Village

There are some days I sit and cry.  I cry with frustration, with tiredness, with negative thoughts that I can't be the mom my boys need.  And every single time I have had a moment, or even a full day like this I have had a friend or family member reach out to me and offer to help, or just talk, or even just take a drive around the block.  (Sodalicious has become a major stress relief in my life.) I can't tell you how grateful I am for these moments, and for the village Will and I have formed to help raise our two special boys. 

People often ask "What can we do to help?"  or "Do you and Will need anything?" 
We don't know how to answer this.  Our personalities are not one who ask for help.  We like to serve.  We like to help and be helpful to others.  So asking for help is hard.  But we are learning. 

There are not many people who can watch Max and Dexter.  They are hard boys and I totally understand make people nervous.  Dexter is so anxious to be without Will or myself and will cry for hours.  Max can bolt at a moments notice, and honestly that scares me.  Then Max and Dexter both have sensory issues with food.  So we tend to do everything as a family.  We go everywhere together and travel as a pack.  It is just easier. 

There have been so many people who have helped us.  So many people who have come to our rescue and have made our lives easier.  The emails of support, the texts on hard days, and the middle of the phone calls mean the world to us.  Will and I feel so lucky to have such a huge village.  It is the stranger in the food store who helps me when both of the boys are melting down in the busy parking lot.  Then there are the group of BYU boys who live across the street from us who have on multiple occassions cleaned up our outside toys and have saved Max when he has run into the street.  These acts of kindness make me have so much faith in humanity. 

This past weekend we took part in The Utah Walk for Autism Speaks.  We created a team for Spaceship Max.  We didn't have any expectations for the walk and we really just wanted to go and be a part of the Autism Speaks event.  I was blown away by the support we had.  We had many who supported us by donating to our team and then we had a great group of friends who came and walked with us.  The event was loud, which for an Autism event was strange, but all and all it was a great morning!  Our family is blessed with so much support.

I love my family!  

Super hero dad

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!