Who needs sleep?

There is a Barenaked Ladies song titled "Who Needs Sleep?"  I have found myself singing the lyrics a lot over the past year.

Who needs sleep?
well you're never gonna get it
Who needs sleep?
tell me what's that for
Who needs sleep?
be happy with what you're getting
There's a guy who's been awake
since the Second World War.

When Max was born he slept. 

Max took awesome naps, he slept through the night very early, and this pattern of excellent sleep was great until about a year.  We have been told and through our own research that most ASD symptoms don't manifest until about a year.  There were some signs when Max was a baby, but sleep wasn't one of them.

Max would literally sleep anywhere.

At about 18 months things drastically started to change.  Max started staying up later and later and having a harder time falling asleep.  He was still taking a solid three hour nap in the afternoon which was a huge help to me because I was pregnant with Dexter.  By the time Max turned two his sleep became a huge problem.  He was struggling with falling asleep, would go into tantrum mode, and unless Will didn't hold him to fall asleep he wouldn't until 1 or 2am.  We didn't change our night routine, we kept everything the same. 

This is how most nights would end, Max crashed on the floor at 1 or 2am.

What changed?  What were we doing wrong?  Were we not strict enough?  Was Max taking advantage of the situation? What was wrong with our son?

We tried everything to get Max back on the schedule we had.  We considered it a small victory when Max would go to sleep before 11pm.  We got Max a big boy bed, had him stop taking naps, would get him up really early in hope that he would be so tired by bed time.  We tried everything.  But nothing was working.
Then Dexter was born.  A newborn and a toddler that wasn't sleeping was killing Will and I.  People kept telling us "he is just regressing because of Dexter, things will get back to normal."  Well normal didn't come back, instead things got worse.  Max was staying up until 2am most nights.  He would scream and cry and spin his hands in front of his face.  He couldn't turn himself off, he couldn't fall alseep.  Then during the day he was a zombie.  It was an awful cycle and this lasted for 6 months until we got some answers and some help.

There's so much joy in life,
so many pleasures all around
But the pleasure of insomnia
is one I've never found
With all life has to offer,
there's so much to be enjoyed
But the pleasures of insomnia
are ones I can't avoid.

Children on the ASD spectrum have a hard time sleeping.  A lot of ASD children do not produce the bodies natural melatonin to allow their bodies to relax and go to sleep. 80% of ASD children have sleep issues.  Once we learned this Max's sleep issues made sense.  He would self stimulate at night to try and calm himself down, but really he was getting more anxious and upset at the thought of going to sleep.  Max also was suffering from Night Terrors.  We needed help.  Our family was suffering.

Max now takes 1mg of melatonin drops every night.  This was suggested by the specialist we saw at Primary Children's in Salt Lake.  We found a slow release drop and it has been working great.  Max now goes to bed around 9-10.  Some nights earlier.  But he sleeps until 8am most mornings.  There are still bad nights, but they are not EVERY night.  He still gets night terrors, but again they are infrequent.  Our life has changed.  Will and I are happier, we are able to get things done during the day, we don't feel like we have been hit by a bus.  We are now capable of helping Max with other aspects of his life.

Aquatic Therapy

Max started Aquatic Therapy last week. (April 31st, 2014)

Since Max was very little he has loved being in the water and watching water.  We have on many instances found Max in the bathroom watching the water pour out of the faucet.  It is soothing and calming to him.  The warm water provides a safe and supported environment, which not only supports Max, but also provides him with pressure that surrounds their body in the water.  Max likes to have pressure around his body, it makes him feel safe.  The aquatic Therapy is also helping with his Social Skills because he is being forced to interact with his therapist and other children in the class. 

Aquatic Therapy is being done at the Provo Rec Center.  Which is perfect for us since it is about a mile away and we have family passes.  His therapist is working with him on "People Games" and also on following simple demands and directions.

People Games are lessons and simple games that help children become independent and learn skills needed in society.  They start out with simple skills to more complex.  The games at first might seem insignificant because they are things you would innately do.  Will and I were doing people games with Max before we even knew they had a "term."  Max enjoys doing things like rolling a car back and forth with a partner, holding hands and jumping up and down, pouring things in and out of a box, and playing chase.  But the KEY to people games is to have Max initiate them. 

Simple directions are things like "One two three jump" and "One two three kick."  They give a direction and a command when to start.  It is organized and scheduled.  These type of direct commands with repetition will help Max focus and complete the task. 

We are going to continue with Aquatic Therapy until Max turns three.  Then he doesn't qualify for Early intervention anymore and we are going to be looking for more therapies for him to do.  But that is another post.

So much to learn...but so grateful for those who have already lead the path to help us best serve Max. 

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:

Max's Favorite App

This is Endless Alphabet.

It's Max's favorite app. And it's brilliant.

Max has difficulty talking. He is still developing speech and language. It's hard to communicate with him. But when he plays Endless Alphabet his face lights up and I know he's having fun and learning.

Max can't say many words, but he now knows about 20 letters and can identify them on command. He points out his favorite letters to us all the time.

Endless Alphabet is made by Originator. They make a bunch of great apps for kids. Check them out.

Note: I swear I'm not being paid to promote this app. I just really like it.

Another Note: As a professional illustrator I really appreciate how well designed and animated the whole thing is. So many apps for kids are ugly garbage. This whole app is beautiful. So much personality in the characters too.

Max's Person

Max has a person and that person is Will.  

It is more than just a bond between father and son.  Max looks for Will in all aspects of life.  Will calms him down, dresses him, changes his diapers, swims with him, wrestles him and puts him to bed.  Will is basically SuperDad. I could do these things and I do when Will isn't available.  But time and time again Max has a panic attack and a huge tantrum when Dad isn't available.

He wants his Dad, he wants his person. 

When Max had his evaluation up at Primary Children's Hospital the doctor explained to us that children on the Autistic Spectrum typically will latch on to one person as a safety net.  Sometimes this person is a sibling, good friend, or grandparent etc.  For Max his person is Will.  We noticed this even as a baby.  It wasn't something I did that made Will his person, it was a choice Max made.  This was very hard for me to understand at first.  A child should naturally want his Mom, but in this case it wasn't about me, it was who made Max feel safe in an otherwise scary world.  Will allows Max to enter the world.  Without a person Max would stay in his own world and never come out. 

This has caused us a lot of interesting problems.  For example, when Will has to go somewhere for work or needs to leave the house for a while, Max has a break down.  He throws things, hits his head against the door and hits his hands on his face.  He wants nothing to do with me.  It is all irrational thinking.  We have figured out ways to calm him before Will has to leave, but some days are better than others.  Max likes to be on a schedule.  And his schedule has to involve Will.  When his schedule is done without his person it isn't right, and Max lets you know.

Will is a very patient and caring Dad.  He is superdad.  He is a great example for Max, and I know as a Mom there is nothing better than watching Max bond with his person.