What is it like to live in the dark?

It is 5:30 on a Sunday night.
We are currently sitting in the dark.  Not because we are watching a movie, or going to bed, but because Max hates lights.

This is Max running to turn off the lights I just turned on.  (My bad.)

Max's OCD and anxiety have been getting worse.  He follows us around the house closing all of the doors. The doors and lights have to be closed and off for him to be able to relax and calm down. He has to have the lights off (or what he calls "the moon") from sunrise to sundown.  It is becoming a hard way to live.
If we put the lights on he goes from calm Max to over-the-top, out-of-control Max.  He cries, tantrums, throws, bites, kicks, and argues - which can last for up to 2 hours.  Yes, we have tried a lot of coping mechanisms, we have tried tents, sunglasses, and other ways to make it dark for him beyond just turning off the lights. (Because that just leads to a meltdown.) Will and I have talked to his teachers, other autism families, consulted Dr. Google and alas they have no ideas other than what we have been trying.

We are hoping this is a phase.  One that will go away quickly.  But for now we are trying our best to stay calm.

That is Max.  In the dark.  Under a tent.  With the lights off. 

Autism just doesn't go away, there is always something new and unpredictable.  So when people ask "He seems to be doing better?"  or "Is the Autism going away?" Or they comment to us how "lucky we are to have an easy autistic child!"  Yes, we are very blessed to have a sweet boy.  Max struggles daily, and sometimes his struggles come out in unforeseeable ways.  Autism is magical, but is also frustrating and hard and something our family lives with.  There are silver linings and amazing moments, but there are also moments where I want to run and hide.  (And cry and wonder what the hell I am doing?) 

So currently if you come to our house, bring a flashlight, and some patience.  You will be in the dark.  And Max still doesn't wear clothes in the house, so expect him to be in his cute boxer briefs.

*And for me writing down my frustrations is the best way to deal with stress.  Hence this blog post.*

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! 

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. 

 

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. 

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. 

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. 

What doess Max eat?

Max is a big boy.  We call him THE TANK.  People are always shocked when we tell them that he hardly eats.  I am sure most people think we are lying.

Max ate well as a baby.  It was the transition to solid food that was hard.
He was bottle fed and at about 16 months we transitioned him to a sippy cup.
He would drink milk and apple juice from his sippy cup.
We noticed at a very young age that he was picky.
We tried to give him everything we were eating for dinner and he would fight us.  He wouldn't open his mouth and hit our hands away. 

Solids Max will always eat:
White Bread
Colby Jack Cheese - only.
Popcorn
Plain pasta
Strawberries - not cut up the whole strawberry
Raspberries - they are his favorite, and have been since he was very very little.

Solids Max will occasionally eat:
(And when I say eat I mean take a few nibbles...)
Pizza - but plain cheese.
Mashed Potatoes.
French Fries
Pancakes

Things people have suggested to us:
Force him to eat.
He will get better when he is older.
Have you tried vegetables and fruit with him?  Have you tried multiple times? 
(Yes, thank you we haven't thought to give our child vegetables...)
Blend in things to his milk.
Don't let him have anything else until he eats a solid food you are having for dinner.

Some suggestions have been helpful, others have made both Will and I feel like dumb parents.  People don't realize how hard we have tried to get Max to even lick food.
But we have learned it isn't the food, it is the texture.

Max has Sensory issues when it comes to food.  So right now, we do what we can.  We are patient and NEVER force him to try something he doesn't want.  We respect that he has a hard time with food, but ALWAYS give him options.

There are days Max will only drink apple juice and milk.  And you know what, this is okay.

The YOGURT STORY:
At about 18 months Max was eating yogurt.  He would eat smooth vanilla yogurt.  Our doctor suggested, bless his heart, to add yogurt flavors to his milk to give him a bit more calories during the day.  The two textures together didn't sit well with Max, and he stopped eating yogurt.  He hasn't wanted it since.  I am so glad that he didn't stop drinking milk. 

 

We know we have a lot of work to do, but we are hopeful that one day he will like ice cream and chocolate.