Thank you Giant Steps - Year 1.

Words can't describe how blessed Will and I feel to have Giant Steps Preschool in our life.  Max started Giant Steps in November 2014 and has made amazing progress since then.  Early intervention is so important when a child is diagnosed with Autism.  It helps build a foundation for the future and gives the child coping skills they will use for the rest of their lives.  Giant Steps is amazing, and I am so happy Max has another year left in the program.  Giant Steps helped Will and I enter his world, and boy are we glad we did!  It is one amazing world to be a part of. 

What a difference 8 months has made:
-Max can now say over 50 words and makes some two-word statements.  In the beginning of November Max was almost non-verbal. 
-His tantrums have decrease tremendously. 
-He has inflection in his voice. 
-He can say names including his own, some friends, close family, and his teachers. 
-He is 80% potty-trained.
-He will look you in the eye when asked. 
-He loves school!  (Even though some days drop off still is hard and there are tears.)
-He is more confident.
-He is eating a little better.  He still mostly has a liquid diet, but has done a food program at school and will at least lick new foods.  
-He has friends at school and knows their names. 
-He knows how to follow directions with multiple steps.
-Knows when to use "please" and "thank you" and "sorry".

We are working on:
-Dressing himself.
-Potty training at home.
-Not running away. 
-Asking for things using "Can I...?"
-Sleeping. 
-Eating.
-Drinking from a regular cup. 
-Writing letters and cutting with scissors.  (He is left handed like his Grandma Strong!)

This summer Max will be attending the Giant Steps Summer Program two days a week in July.  We are going to try our hardest to keep Max on a schedule.  *Try* is the key word.  

A few of Max's amazing teachers who we love so much:

This is Amber, the Autism Specialist in Max's class.  She is amazing and has helped our whole family. 

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This next year Will and I have been made Co-Chairs of "Friends of Giant Steps" (FOGS), which is a non-profit organization that provides support for the Giant Steps Preschool.  We are both nervous and excited to have the opportunity to serve the program.  We are very proud to be a part of such an amazing organization, and we have blessed with so much love and friendships.  Wish us luck!  And when the Charity Auction comes around in March 2016 I hope to see you there!  We would love your support. 
If you would like to stay up to date on Giant Steps Events make sure to "Like" the FOGS facebook page:  Link here.  

"Are you a hobo?"

Max loves to mimic.  He will mimic anything you say, and sometimes it comes out right and sometimes we get interesting interpretations. 
We have had our fair share of "curse" words come out and Will and I just laugh, and then he repeats it, we correct him.  But to be honest hearing your three year old say "shit" is pretty funny. 

Max mimics almost anything, but his favorite thing is movies.  He can watch a movie once and it is stuck in his mind.  His current favorite is WRECK IT RALPH.  If you haven't seen if then you should, it is a really cute-fun-family-friendly movie.  There is a part in the movie where Ralph (the main character) meets Vanellope (the cutest little girl).  Vanellope asks Ralph "Are you a hobo?"
Here is the clip from the movie. 

Vanellope leans over a tree branch and asks the question.  This is Max's favorite part.  He laughs and laughs.  Max can mimic the whole scene.  He leans over the back of our couch and says "Are you hobo?"  It is pretty cute and he is so proud because he gets a good laugh out of Will and I.

I wish I had a better video of Max, but he turns off the charm once my camera comes out. 
I am loving this movie memorization phase and I hope it stays around for a long time. 

Singing

I love hearing Max sing.
He has always loved music.
Recently he has been singing everywhere and repeating songs he has learned at Pre-School.  He doesn't know all the words, but he has great pitch and can stay right on beat.  It is pretty awesome.
He knows the ABC's including the ending.  He will randomly sing it while in the car, in the shower, and even while watching his truck videos.  He loves the sound of his voice.

I wish I had a cute video of him singing.  But as soon as I pull out the camera he gets really shy and stops.  So instead you are getting a video of him doing a somersault.  This is his other new trick.  He is a monkey!  Since being at Pre-School for the last month Max has progressed in leaps and bounds.  His vocabulary is increasing, he is saying more things rather than just screaming for help, he is putting 3-4 word sentences together, and has mastered the art of saying "hello and goodbye!"  When I come home from work he is very serious about making sure he says "Hi Mom!"

Max is very black and white.  So when he learns something about a social cue he takes it very seriously.  We say hello and goodbye to everyone.  He knows that when someone leave a room or he leaves he says "Bye" and when we enter or someone walks into his area he says "hello or hi!"  It is funny sometimes because he will say hello and goodbye in the funniest places, or in a place where you don't really need to say either.  But again, black and white and very proud!

Will and I have looked back over the last year and thought about where we were a year ago.  We were constantly stressed, we were not happy parents, we were worried about Max, he was always having a tantrum and hurting himself, and no one in our house was sleeping.  Fast forward 365 days and we are still learning a lot, but we are happy, Max is learning and progressing, and we are better parents because we entered Max's world.  I am so happy he let us in!

Monkey Man Max

Talking isn't a requirement

Max might not talk much, but boy there is a lot going on in his mind. 
He is very smart.  
He can mimic with the best of them. 
He has the coolest gibberish, and tell us a lot of stories.  We don't understand anything he is saying, but his inflections are spot on. 
If he is in a room of adults and they are all talking and using their hands, he will stand right in the middle and mimic their motions.
He loves to memorize movies.  He memorizes the actions in the movies, and has been doing this since about a year old.  Currently we are very obsessed with Wall-e.  In this clip Wall-e is doing his "job."  He makes trash cubes.  Max will run over to all his toys, collect them in his shirt and then dump them out.  He mimics.  It is his favorite thing to do.

He also memorizes songs.  The beat especially.  He knows all his A-B-C's and can count to 10 without skipping a beat.  They are a formula.  He memorized them.  He doesn't realize they make words, but it is a system. 

He also knows that there are certain formulas in life. For example when we leave somewhere he says "Bye pool" or "Bye Trucks" or "Bye bikes" or "Bye car" because he knows we are leaving.  And he now understands people say "bye" to indicate they are leaving. He is VERY diliberate.  He is black and white, no gray area at all. 

He is very happy or very sad, there is nothing in between.
We are figuring him out.  And I love learning about Max. 

Trucks.  His happy place. His favorite part of life.  When my brother was visiting he said "I don't know if anything makes me THAT happy."  And he is right.  Max is over the moon happy about Trucks.  And it shows.  He is just awesome!

His facial expressions are his way of talking.  And you are see the joy in his face when he sees a truck on the freeway or when the school bus passes our condo.  He doesn't need words, we understand. 

A wonderful story - Book recommendation

Will and I just started listening to the book Life Animated and so far it has been an emotional journey for both of us.
Will and I get suggested books to read ALL THE TIME.  And to be honest we just don't have the chance to sit down and read a book.  That would be nice, maybe one day...
But we are in the car a lot, and Will loves audiobooks. 


Here is a summary of the book:
Here’s how this survival story begins. Just shy of his third birthday, a seemingly typical, chatty child became mute. He suddenly didn’t sleep or eat, and cried inconsolably. His only solace: the Disney animated movies he loved before the autism struck. But they had changed, too—they’d become gibberish, because the boy’s ability to understand speech had also vanished. So he memorized them, dozens of them, based on sound alone. What follows are a series of startling breakthroughs, as, for years, the family began to communicate with their lost son in movie dialogue. Recite one line, he’d look you in the eye and recite the next. But was he understanding?

Will and I both have cried in multiple spots.  We have held hands and looked at each other without saying anything, but just understanding each others feelings.  Max is this child.  Max has the same issues.  There are other families just like ours.
Max does the same thing the little boy in the book does.  He memorizes movies.  He recites the lines and talks to the characters.  But when you ask Max about the characters or about a movie scene he won't respond or repeat lines from the movie, he only does this when the movie is playing.  He goes into another world when he watches Winnie the Pooh, Mickey Mouse, Elmo, Perry the Platypus, and Wall-e.  He understands them, and for a split moment he is a typical child, responding, being social, and even repeating words.  But as soon as the show is over the moment is gone.  I am glad Max has characters in his life to connect with.  I am glad there is something that he can communicate with. 
And Will and I feel lucky to have Max and his movies in our life.

Another summary of the book:
In fact, their young son had invented a language to express love and loss, the bonds between brothers, the nature of beauty, and the true meaning of the words “happily ever after.”
At its core, this brilliantly crafted narrative—written by the father, but shaped by his wife and children—isn’t about autism or Disney, though you’ll never view either one quite the same, again. It’s the story of a family’s resilience when their world is turned upside down. It’s about perseverance and hope.
A child disappeared into confusion, frustration, and silence. But deep inside his dark cave of isolation, he and his family began to dig for diamonds, working year by year, trial by trial, on a most improbable project: to find a way each of us can learn to animate our lives.
  

 

Will and I have been looking back at pictures of Max, and we have been talking about things we now notice as "not typical" or "on the spectrum."  I even think in some pictures Max is honestly trying to tell us something isn't right.  I feel so lucky that Will and I both listened to the spirit and started seeking out help for Max.  Max is learning in his own way, through movies, tv shows, and books.  He has friends who are very real to him.  He has his own "Winnie the Pooh" who he talks to and communicates with.  His friends might not be people, and socially he might be far behind other typical boys his age, but he is learning and progressing.  Will and I notice a difference in our family, and it isn't Max who has made a huge change, it is us.  We are allowing Max to be himself, we are allowing him to stay in his world.  Max is slowly entering our world, but we needed to jump into his first. 

I am looking forward to listening to the rest of the book with Will. 

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. 

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.

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.