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.  

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. 

 

There are bad nights

Max had an awful night last night.
He was doing things he hasn't done in months. 
We give him 1mg of melatonin to help him relax and allow his body to sleep.  But last night, his poor mind was racing a thousand miles per hour.  He was up saying gibbering, echoing and moving for hours.  Will was up with him almost until 2am when his brain finally turned off.  I went in to check on Max and Will at 12am, and Max was very awake, talking 50 miles per hour.  Now when I say "talking" he repeats sounds, and letters, but they don't mean anything. 

This morning he was up at 7am.  So with very little sleep he is ready to face the day.  And Max is non-stop.  He doesn't rest.  So here is hoping for a good nap for everyone today!

I know there are going to be nights like this.  I know every child has bad nights, and bad days.  It makes me realize how far we have come.  How much good we are doing for Max because he doesn't have awful, frustrating, exhausting nights ALL the time.  I feel so blessed to have found out early that Max is Autistic so we can help him, and that our family can move forward. 

Early intervention is so important. 
Know the early signs of Autism.  
If you question something developmentally with your child ask for help and guidance. 
Go with your gut.  Especially Mom Guts.  They are powerful!
Ask for help, and don't be ashamed of your child. 
Helping your child will help you. 

Max is a champ.  He makes me a very happy and proud Mom. 

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.

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.