My gut feeling

I think the most asked question I get about Max is "When did you know something was wrong?"  This is a hard question to answer, because it wasn't a specific even but a series of things that made me wonder if my child was "different."

One
His first birthday.  Max was always a very laid back child.  He smiled and was quiet.  But being the center of attention was something he didn't like.  At his first birthday he screamed and cried uncontrollably at the first note of happy birthday.  It took him 15-20 minutes after the song was over to calm down.

This was a blog post from March 2012, when Max was 9 months old:
"Max has started clapping and it is darling.  If you say "Max Clap" he will.  He still doesn't like a whole room of people clapping and I still see him get a sad face during a clapping moment in Elmo's World, but he can clap now and that is what counts. "

Two
Every mother compares.  And even though I was told not to, I still did.  Max wasn't saying words or even sounds at one, or even 18 months.  He wasn't waiving bye-bye or saying hi.
This was a huge indication to me.  But again, even my husband, said he will learn, he is only 18 months.

Three
Nursery.  Watching my little baby stand in a corner and cry was heart wrenching.  He wouldn't interact with the other children, he would flap his hands and hit his hands against his head.  When snack time or singing time came around it was a huge melt down.

Four
The tantrums.  He was physically hurting himself.

Five
I just knew.  I don't know how to explain it, but I knew from the time he was very little that there was something wrong.  But now I know that it isn't a "wrong" but just a different way.  Max just learns different.

Today I went out alone with Max.  He didn't have his Dad, he was on a date just with his Mom.  We held hands, we made three different stops, and we looked at trucks.  He didn't tantrum, he didn't run away, he held my hand.  It was perfect.  My gut isn't hurting like it used to, I feel good about what we are doing for Max.  I feel empowered.  I am Max's Mom.  

I want to emphasize to go and get help if you think something isn't right.  Even if nothing comes of it, go with your gut.  I am going to do a post of the initial tests we filled out for Max and how they confirmed my gut feeling. 

Trampoline Fun

Max is very busy.  Like most two year olds (who are almost three) are.  He constantly wants to be outside, running, moving, and often will tantrum if these activities are not done "right away!"  He will bring us his shoes and all of the shoes he can find to help us "get the hint" that he wants to go out.  He also will bring the stroller and start putting cars in the stroller in hope that someone will take him on a walk.  Sometimes he will even sit very quietly in the stroller just waiting...

About a month ago we decided to buy a mini trampoline.
This was the BEST 40 dollars we have ever spent.
He bounces on it all the time.
He bounces on it watching movies and singing along to his favorite songs.
He gets energy out and he loves it.

This has helped so much with rainy days, and moments when we just can't take him outside to play.

I would suggest this to anyone with a toddler!

In the video below it is Max bouncing on the mini trampoline watching Mario Brothers on You Tube.  You can hear him saying "Mario"!

Good News Minute

This morning we went to Sunrise Preschool in Provo.
Max qualified for the special needs program and he will start in the Fall.
We are so happy and excited for him.
I am grateful for the help and to learn more about how Max learns!

Happy Day!

I am so proud of him.
He had to go through 5 different types of tests.  He did great.  He qualified in 4 areas.  The only area that he didn't qualify in was his fine motor and gross motor skills.  He can stack dice like a pro! 
To qualify he needed to score at a 2% or below in only one area.  So we are good, he did that in 4 areas.  He got to meet his teacher for next year and walk around the school.  I couldn't be more excited for him.  We know we have a lot to learn, but it is a step in the right direction.

I can't wait to go shopping for his first day of school outfit!
 

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. 

Music - Part 1

Max has always LOVED music.
Since he was a baby he has loved the sounds music makes.  We used to have a CD player in his room when he was newborn, we would play Disney Lullaby's on it.  He then got a Fisher Price Mobile that he LOVED and would even turn it on in the night when he could reach the buttons.

He can memorize music and the beat like nobody else.
It started out with Elmo's world and Yo Gabba Gabba.

It is a amazing to me sometimes he will hear a song once and know the beat and some of the catch words.  He memorizes not only the beat but the motions that go along with it any song.  Currently he loves Phineas and Ferb, Winnie the Pooh and the Muppets, but he will memorize anything with a beat.  Even though he doesn't say most of the words, he knows the inflections. 

For example in the movie cars he knows the music with words, but also the background music and the motions the cars make when they are driving.  

Music calms him.  He is soothed by listening to music, especially music videos.
Story Bots are some of his favorite music videos.
If you haven't see the You Tube Channel for Story Bots you should check it out, they have so many GREAT educational videos and they are done with great animation.

Here is a GREAT story about Music, Chimes and Autism:
http://www.autismspeaks.org/blog/2014/04/11/chimes-autism-inspired-boys-passion

ASD signs in babies

I wish I could go back and be more aware of the signs Max showed at a baby that he had Autism.  We are grateful that we picked up on the signs as early as we did so that he can get the help he needs now, but the guilt is still there.

Why didn't I notice the signs?  Why didn't I pick up on little things?  Why do people say "don't feel guilty, don't feel bad, you didn't know..." when in all honestly they too know they would feel the same guilt?  Max was our first child we didn't know what to expect for a lot of these things. 

A lot of things we have learned through Dexter.  He IS doing these things, and we are grateful for him because it was Dexter who showed us that Max wasn't hitting the natural milestones.  

Here is our list of things we wished we would have noticed:
1.  Max could sit on his own and stare at the fan for as long as we would let him.  Without needing anything, crying, fussing, or  making much noise at all.

We were told time and time again "What a good baby he is, he is so quiet, he hardly needs you for anything..."  And he was a great baby, and a very cute one at that.  

2.  He didn't make eye contact or stay focused.  He would turn his head and look at you in the corner of his eyes.  He wouldn't follow me around a room and wasn't concerned about where we were.

3.  Max wasn't making babbling noises or much noise at all.  He wasn't communicating.  We taught him some sign language and that was very helpful.

4.  He didn't point, clap, or wave bye-bye.  These three things are something we now know to be an indicator that your child isn't picking up on social cues.

5.  Max didn't reach up for us to pick him up.  He would wait for us to pick him up.

6.  Max made unusual body movements.  He would stiffen his legs, arch his back, flick his fingers in from of his face, or hit his head against the floor repeatedly.

7.  Max DID smile a lot, but he wouldn't imitative other emotions like sad, and mad.  He still only recognizes happy.  Mad and sad are emotions that he just doesn't understand. 

A lot of these things Max still does.  We are working hard to improve all areas.  Right now we are currently working on social cues like saying bye bye and waving.

There is a false idea that autism can't be diagnosed in someone so young.  This is false.  The earlier the diagnosis the better.  Early intervention programs can be so helpful and can encourage your child to have more success in school, and in life.  

Here are some links that we found helpful:
http://www.cbsnews.com/media/10-early-warning-signs-of-autism/

http://www.helpguide.org/mental/autism_signs_symptoms.htm

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: