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.  

What therapies does Max get at school?

Each week Will goes into volunteer at Giant Steps.  This is part of being a family in the Giant Steps program.  They didn't have us volunteer in the classroom until Max was settled and in school for a month.  I think this is so smart. 

Max has a strict routine he follows at school. 
His school color is yellow.  Everything he does, every line he walks in, every bin he uses has yellow. 
When he comes to school in the morning he puts his name marker in the yellow pocket. 
He loves the color yellow now, for obvious reasons.  It is HIS color. 

He has speech group work, ABA therapy, social group, and then "work" centers. Max also does Kindermusic at school twice a week.  Each time he finishes these activities he gets to play with toys and other classmates.  It is very preschool oriented.

What is ABA therapy? 
Applied behavior analysis (ABA) is the use of these techniques and principles to bring about meaningful and positive change in behavior.
Behavior analysis focuses on the principles that explain how learning takes place. Positive reinforcement is one such principle. When a behavior is followed by some sort of reward, the behavior is more likely to be repeated.

For Max his reward is playing with special trains and cars that Will and I bought for him.  They keep these special cars and trains in a yellow bin just for Max.  He only gets to play with them after ABA therapy sessions, so for him they are very special.  We have already put in new toys and try to mix things up for him once a month or so.  Each child is different, but usually food isn't used as a reward. These children are only 3 and 4 years old, so toys usually fit the bill as a reward.  

Max is working specifically on "hands down feet down" when sitting, and then "hands down feet down eyes up" when spoken too.  They play games with him and do activities that help him learn how to do this.  It is repeated over and over.  And it works.  He is doing much better at looking at people, he responds, and he is learning.  He is also learning about social situations like saying "hi" and "goodbye" and "thank you" and "you're welcome."  Which is funny because Max will put all of those together, just to make sure he gets them all in.  My favorite is when he says "thank you mom, you're welcome."  I don't even need to respond, he did it for me!

We get daily and then weekly reports on how he is doing.  There are a lot of stats that are recorded and as a teacher myself I am AMAZED at all the data that they have on Max.  

Playing after Speech

ABA therapy session with Evan.  He is fantastic with the kids. 

Max is learning how to take pictures and smile for pictures in one of his ABA sessions. 

They have a place for everything and a picture to go with every toy. 

I need to do this in my own house!  The organization is amazing. 

There are a lot of different experiences with ABA therapy in the Autism world.  There are mixed feelings.  A lot of parents feel that it doesn't work, that it is to formulated, and that the students don't get enough play.  There are more strict ABA therapists, and then there are more relaxed "play" rewarded ABA therapies like at Giant Steps.  Max is 3.  I want him to still enjoy school.  I am really happy with how ABA therapy and how all the "work" groups are run at Giant Steps. 

I am also glad that Will gets to see how the school runs the different therapy sessions so we can be involved with Max and how he learns.  We are all learning together. 

The Christmas Program

Max's school Giant Steps put on an adorable Christmas Program.  There are four different Giant Steps schools in Utah County, which has a total of 45-50 Autistic Students.  So imagine all of these 3-4 year old students on stage in Santa hats.  It was cuteness overload.  They sang a medley of Christmas/Holiday songs which lasted about 25 minutes.  It was the perfect little program. 

Max came out on stage and you saw the fear in his eyes.  He doesn't do well in crowds, with loud noise, or when all the attention is on him.  So as soon as he figured out what was going on he got really sad.  His bottom lip started to tremble and you saw the tears coming.  His amazing aid, Brooke, put him right on her lap and did her best to try and make him smile.  Once the program was over, and Max saw Will all was well with the world. 

We took pictures of the program but had to sign a release that said we wouldn't share other children's pictures, which I completely understand and respect.  I cropped a few pictures so Max was just viable. 

This program was another testiment of how wonderful Max's school is.  We are so lucky to have such wonderful teachers taking care of Max during the school day.

Merry Christmas!

With Brooke before the program started.  She loves Max and the feeling is mutual.

Family Picture after the program.  Max was so proud of himself and very happy to be off the stage and with his Dad.  

Progress is Progress

This time last year Will and I started to research Autism.  We started to wonder if our son was on the Autistic Spectrum.  In December  of last year Max had his 30 month well-check from his amazing pediatrician and it was determined that Max was on the spectrum and we needed to get him officially evaluated.  Dr. Adams said something to me that day that has stuck with me and I say it to myself daily: 

"Progress is progress no matter how big or how small."

He gave me a lot of guidance last year.  He sat with me alone and talked with me one on one.  He told me that mothering Max would be different, but it would be magical.  And he has been right. 

Max has made tons of progress this past year.  Some of the progress he has made seems small, and for the average child it might not even be noticed. 

Here are some of the small but MIGHTY progressions Max has made in the past year:

1.  He is occasionally speaking in complete sentences.  "Oh no, what happened?" and "What you doing?" are his current favorites.  He mostly says one or two words, but he tries new words all the time. 

2.  He is a great mimic.  He can memorize shows, movies, and songs like no one I have ever seen.

3.  He has made friends with his cousins and his little brother.  He makes eye contact with all of them.

4.  He says "Hi and Bye" on a daily basis. 

5.  He is sleeping with the help of melatonin, but he is sleeping. 

6.  He doesn't run into the street anymore, he stops at the end of the sidewalk.

7.  He is pretend playing.  This just started a few months ago, and progress has been slow, but he is doing it more and more. 

8.  He doesn't have daily 45 minute - 60 minute tantrums. 

9.  He can build a train track all by himself.  He interlocks the pieces and puts a whole track together.  This is a huge progression in small motor skills. 

10.  He can be separated from Will for long periods of time.  He understands that he will see Daddy again. 

11.  He says Mom now, which to me is the BEST progression of the whole year. 

12.  He has been learning how to drink out of a cup (without a top), we have had a lot of spills, but he is learning. 

Why all the progress?
Will and I entered his world.  We have been open to telling people about Max instead of being embarrassed about him. 
His teachers at school have helped us so much, without the therapists and amazing Autism specialists at Giant Steps we wouldn't be as far as we are now. 
Constant love and support from friends and family. 

Max is a very special boy who does make our life magical.  And we are so lucky!

Max's first week at Giant Steps

Max started Giant Steps Preschool this Wednesday. 

I was very nervous to send him but knew it was the exact place he should be at. 
Giant Steps is a Government Funded Preschool specifically for those children age 3-5 with Autism.  I put Max on the waiting list last January and never thought he would get in.  There are 131 children in Utah County on the waiting list.  That is a lot of children.  There are three Giant Step Classes in Utah county and each class has 12 students. 

Max attends school Tuesday - Friday from 9am-3:30pm.  It is a long day, but worth it.  He gets one-on-one Therapy three times a day, plus Music Therapy, Physical Therapy, Computer and Speech Therapy, and even Food Therapy.  The day is packed, and busy. 

My biggest concern was Lunch time.  Max doesn't eat much in the way of solid foods.  We were told to pack a bunch of different foods that he is tried or even liked in the past.  The first day he hardly ate anything.  When he came home is drank two full sippy cups full of carnation instant breakfast.  Max only drinks out of a specific sippy cup.  And if we get him to eat one piece of solid food during the day we call it a good eating day.  He mostly drinks his diet of Chocolate milk and apple juice.  And YES we have tried everything, we have done everything and made anything he wants to get him to eat solid foods.  It is a texture issue and with some therapy and help outside our home we are hoping for an improvement.  So after three full days he started eating more and more.  I know he is hungry!!

Each day we drop Max off at 9am.  He can't be late.  They are on a very strict schedule.  And right at 3:30 Max is done and waiting for us outside the building.  The parents don't go inside.  Max doesn't bring in Gerald.  And he walks in with the help of an Aide.  It is all a system, and it is wonderful for a child who is Autistic. 

We got back the testing this past week and although I am not going to share his test scores, because in the scheme of things they don't matter.  We know he is Autistic, and the testing just confirms that.  But we do have a better understanding about where developmentally he is.  His speech is the most delayed, and soon Dexter and Max will catch up to each other in the way of speech development.  He is more sever in a few areas, and we will work with the Giant Steps teachers to help him in these specific areas. 

The first day I texted his teacher and she was so nice to send us pictures and text us back at lunch and share how he was doing.  They also send home a progress note daily that shares with us how he did during his Therapy Sessions.  So the "What did you do at school today?" question is answered each day by this progress note. 

Progress Report

So far so good.  Will and I are extremely happy with the choice we made.  It was made with prayer and guidance from Heavenly Father and I know he is watching over Max.  We are also overwhelmed by the support of friends and family.  Thank you so much for the notes, text messages, emails and phone calls asking how Max was this week.  We are so blessed to have such a great support system. 

School Changes

Max has some big school changes coming in the next few weeks.
This decision was one Will and I had to make with tons of thought, research and of course prayer.
We want to give Max access to the best education for him.  We want him to learn and grow in an environment that will nurture him. We are just like any other parent, we want the best for our child.  I think being a teacher has really opened my eyes to realize that children all learn VERY differently.  And my child is no exception.  And as his parent I want to make sure I am putting him in a school that will help him reach his own potential.

Currently Max is at Sunrise Pre-school in Provo.  It has been great for him.  But he needs more.  We have noticed growth but we have also noticed a plateau in his learning.  His teacher talked to me two weeks ago and she agrees.  Sunrise is a school for children with developmental delays.  They don't specialize in Autism.  They don't do some of the proven therapies that would help Max thrive.
Will and I started researching and finding out about our options.
Last year we put Max on the waiting list for a program called Giant Steps. And I honestly forgot about it because I was told that he might never get in.  The waiting list was very long.
Giant Steps is a preschool for Autistic children.  The main school is in Orem, but they started an extension program for 12 students in Provo.  And fortunately for Max there is a spot open!  We have a home visit to see if Max would be a good fit.  Giant Steps is an intense program.  He would go to school 4 days a week for 6 hours.  This is a lot of school, but it is also a lot of therapy that Will and I couldn't provide at home.  This program is also free and the state of Utah provides funding for the program.

Another option is a school called Clear Horizons.  It is a Private School in Orem specifically built for Autistic Children Pre-school to 17 years old.  We went on a tour on Friday and Will and I were very impressed.  They have a new Principal and he seems to be great at his job.  The facility is beautiful and Max would benefit from all of the technology, tools, and sensory rooms that the school provides.  The hard part is that it is a private school and therefore it has a tuition.  The tuition is expensive and not something we have in our budget right now, but we are hoping that in the future we can get Max into Clear Horizons.

I want to write more about the different therapies in another post.

These therapies include:

• Principals of Learning and Behavior Modification such as Applied Behavior Analysis (ABA)
• Attending Leveling (taken from “Getting Ready to Learn” model) and Curriculum Progress
• Principals of Greenspan’s FloorTime/DIR
• Basic principles of TEACCH (picture schedules)
• Alternative Communication Methods such as simple Sign Language or the Picture Exchange Communication System (PECS)
• Social Stories

But right now we are praying a lot and figuring out the best place for Max.

Pumpkinland

Max went on his first preschool field trip today to Pumpkinland.  He got to ride the big yellow school bus which was the most exciting part of the trip.  His teacher said he loved the bus! 
Will met him at Pumpkinland, which was a good thing because Max became very overwhelmed at the amount of other kids and people there.  This has been happening a lot lately.  Max doesn't do well in big crowds.  He keeps his head down, gets scared, and then melts down.  The loud noise, the commotion, and the constant movement of people really effects him and he gets super stimulated. 
Max likes the normalicy of our house, a few people, and his trucks. 

But the field trip was good and we are excited to go on a little family outing this weekend to the Big Red Barn to pick our family pumpkins. 

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

Good Luck Max!

Max started Pre-School today.
We tried to get pictures, but he heard "car, school, go!" and wanted nothing to do with pictures.
So we caught a few going down the stairs.
A few college students passing said "awe cute!"  And I agree he was pretty cute walking all grow-up with his backpack pack on.
I am feeling so blessed to have a pre-school like Sunrise so close to our condo.  I am so lucky to have teachers who know how to teach a child with Autism.  I am one lucky Mom.

I can't wait to see him after school today!
Here is hoping for a tantrum free school day.

 Love you Max Strong!
You are going to love school this year!

UPDATE:  Will went and picked him up at school because I was a work.  His teacher said that for the first 30 minutes he was on the floor not moving, upset, and mad.  Then after about 30 minutes she said he started to move and play with toys.  She said after that he was fine for the rest of the day.  HE was VERY happy to see Will and the big buses outside after school.
It is going to get better each day.   He is going to get into a routine and I know he is going to love school.
DAY TWO:  This was a rough one.  He was upset going to the car.  He was upset walking in to his classroom and he was upset when I left.  But I had to leave.  His teacher, Mrs. Becky, is darling.  She knows I am a teacher, and she knows I worry.  So she emailed me during my prep time and told me "Max cried for only 5 minutes after you left, drank his juice, and then played with magnets.  He is currently doing great."  This is exactly what I needed to hear.  I know everyday is going to be different, but I know we are doing the right thing by sending him to preschool even on the hard days.  

My fears for Max

Max starts pre-school in a few weeks.  I am really excited for him to start a new phase in life, but I also have so many fears.  I have been laying awake at night thinking about not just preschool but elementary school and high school.  I have reservations about sending Max to school, but I know in my heart this is the right thing for him and for our family. 

I am going back to work part time starting this week.  I am going to be teaching 6th grade math at Walden School in Provo.  I am excited.  I love teaching.  But there is part of me that worries about leaving the boys, especially Max.  Will is going to be home with both boys.  Max goes to pre-school two times a week at first, then most likely will switch to three days.  He will be at school in the morning. 

Why do I lay up at night?  Why do I worry?

I hate the term "getting better" because he isn't sick.  He doesn't have a cold, or the flu.  He has Autism.  He improves.  He learns.  He grows.  He has set backs.  He is going to have difficult things to deal with in his life.  Especially socially.  I worry about those things.  I have fears.  

My fears are simple fears. But real to me. 
1.  Will Max make friends.  Real friends.  Not just friends who "deal" with him or are forced to be nice to him.  But friends that will love him and his quirks.  Friends that will understand and accept him for the special boy he is.  Friends that will come over and watch Disney movies and won't care if he has all the lines memorized and all the actions in sync. 
2.  Is he going to be able to leave Will.  Max is so attached to his Dad.  They are best friends.  They get each other.  Will understands Max more than anyone.  And Max uses will for comfort, friendship and making the connection between his own world and the world we live in. 

 3.  Bullying.  Teasing.  And being unkind.  I think I worry about this the most.  I have already seen other kids laugh at him and make fun of him.  I have seen kids laugh at the way he "talks" and mumbles, the way he tantrums and the way he plays with trucks.  I notice.  I hope that Max will learn to stand up for himself, or have a group of friends that will stand up for him. 

The other day we were at the mall.  Max was having a total meltdown in front of The Gap.  I am used to other parents looking, staring and giving me the stink eye.  I laugh at it now, but it used to really bug me.  Sometimes I want to scream and say "so your child is perfect and has never had a tantrum in public, wow, you are blessed!"  But I don't.  I keep calm and concentrate on my son.  But this particular day there were kids sitting on a bench watching him, and laughing.  It broke my heart.  Max looks older, at least 4 or 5.  He shouldn't be acting like this.  But he is 3 and Autistic.  So this is what we deal with. 

4.  I fear that his brother is going to resent him.  I fear that he is going to be embarrassed by him.  I look forward to the day where Will and I get to talk to Dexter about Max.  Explain to him how Max's mind works.  Explain that he needs to be loved and accepted. 

 5.  He is going to be labeled at school as a "problem" or a kid that "has issues."  Trust me.  I am a teacher.  I know these things happen.  I pray that he has teachers throughout school that love him and accept him.  I try to be this teacher in my own classroom.

Max still has hard days.  When people see him, they usually see him in his element or at a good moment.  But when our condo door closes and he has a meltdown, a panic attack, or stays up until 3 or 4 am that is reality.  That is what we deal with.  It is hard to explain to people "Yes he is doing well, he is learning new things, he is saying more words."  When the night before was hard.  When he hit his head so hard on the wall that he has a bruise. 

 Fears.  These are also real.  

Pretend play

We have been in California for the last three weeks.
Cousins are the best.
Older patient cousins are amazing.
Max mimicked them.  He observed their behavior and watched what they did.  By the end of the three weeks he had more words and was even trying new foods. 
If this is ANY indication of how pre-school is going to be I am super excited.
Max is very lucky to have such good role models in his life.

Pretend Play

"Young children learn by imagining and doing. Have you ever watched your child pick up a stone and pretend it is a zooming car, or hop a Lego across the table as if it were a person or a bunny? Your child is using an object to represent something else while giving it action and motion. But this pretend play is not as simple as it may seem. The process of pretending builds skills in many essential developmental areas." -Scholastic Magazine


Max has never done pretend play until this last trip to California.  He is just starting, but any movement forward is progress and we get very excited.  He started pretending to be on the phone, pretending to brush his stuffed animals hair and even feeding a stuffed baby.  He knows what to do, and is pretending to do them.  He usually will come and "show" us his new found skill and then go back to playing with cars or trucks, but we get overly excited.

Children on the autistic spectrum have a very hard time in social situations and pretend play is very social.  Some children pick up pretend play quickly and others, like Max, don't.  He has never showed an interest in anything other than his cars and trucks and things that move.  

Pretend play is important for three major reasons:
1. Imitation skills. Typically-developing children watch how others play with toys and imitate them. For example, a typically-developing child might choose to line up blocks one next to the other the first time they play with them. But as soon as the typically developing child sees others build with the blocks, he will imitate that behavior. A child with autism may not even notice that others are playing with blocks at all, and is very unlikely to observe others' behavior and then intuitively begin to imitate that behavior.
2.  Symbolic play skills. Symbolic play is just another term for pretend play, and by the age of three, most children have developed fairly sophisticated tools for engaging in symbolic play both alone and with others. They may use toys exactly as they're designed -- playing "house" with a pretend kitchen and eating plastic food. Or they may make up their own creative pretend play, turning a box into a fortress or a stuffed animal into a talking playmate. Children with autism rarely develop symbolic play skills without help: They may enjoy placing engines on a track, but they're unlikely to enact scenes, make sound effects, or otherwise pretend with their toy trains.
3.  Social communication skills. In order to be successful in pretend play and imitation, typically developing children actively seek out engagement and communication, and quickly learn how to "read" the intentions of other people. Children with autism tend to be self-absorbed, and have little desire to communicate or engage with playmates.

Here is a great article on pretend play and Autism.

California and Cousin David.

Cousin Andrew graduated from High School.

Pretending with his trucks instead of just lining them up.

But always with a lot of concentration.

Pretending to fix things like Bob the Builder.

Pretending to work like Daddy.

Bottom line - Family rocks.  Learn is amazing.  Growing together as a family with understanding is so important.  Max is so lucky to have a supportive group in his life all over the country.

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!