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!

How big is a crowd?

Will and I have always noticed Max hates crowds, large gatherings and events with a lot of noise. 
His first birthday was loud, the singing made him cry, there were way to many people, and all the attention was on him.  Disaster. 
Last year on the Fourth of July Max was really shaken up by the fireworks, the loud noise, and all the lights.  We learned our lesson.  He doesn't like surprises.  He doesn't like when he doesn't know people in big crowds.  This has actually gotten worse as he gets older. 
Holidays are hard.  He knows something exciting is happening.  He knows there is an increased excitement, and that overwhelms him instead of making him excited.  Most kids would find excitement in the different schedule, the anticipation of a party or family gathering.  It gives Max extreme anxiety.  Most of the time at a party you will find Max playing by himself in a room where it is quiet. 
A few weeks ago we went to a good friends house for their sweet daughters first birthday party.  Max knew most of the people there.  But it was a new house and it was loud for Max.  They had a great play room that was off to the side and Max stayed there the whole time.  He doesn't eat cake, so to him he didn't miss anything. 
Max likes routine.  He likes Gerald to be close by.  He likes to know his blankets are near.  He likes being home.  He likes his cars, trains and trucks.  He is very particular with how he eats and how he drinks his milk and apple juice.  He has OCD tendencies and gets very overwhelmed and upset when something isn't part of the normal routine. 

Gerald, Blanket, and Mickey Blanket.

Max likes driving in the car.  He likes being in his car seat.  It is tight and safe.  He could drive around for hours.  He loves pointing out all the trucks on the highway.  It is familiar and safe.  We actually have started taking him for drives when the day has been hard.  

The focus is astounding. 

 Things we have learned that help Max:
-If we are going somewhere new we will let the people know that we might not be able to stay long, or even make it into the house.  Most people have been very understanding and have offered help when needed. 
-We talk to those who are at the party and let them know that Max will most likely be on his own planet, but he is okay and he isn't trying to be rude.  He is trying to figure out how to make himself feel comfortable. 
-We bring Gerald and Blankets to all new places.
-We always have a cup of chocolate milk or apple juice. 
-Talking to Max a few days in advance about what will happen does help.  For example we watched Curious George Halloween everyday for the whole month of October so Max would understand Halloween.  And it worked for the trick or treating part, which we thought was actually going to be the hardest part of the day. 
-We now can notice signs of him being overwhelmed before he gets to the tantrum, out of control, crying behaviors.  And when we notice these signs we leave, or remove him from the activity, place we are at, etc. 
-We avoid certain stores, times of the day to go out, and places where a lot of people are gathered.  Max loves walking around the mall but doesn't like it when it is crowded.  So we go during the day, when it is almost empty. 

We adjust.  We learn.  Sometimes we are shocked at how good he is handling a situation, and other times we realize that we made a mistake and shouldn't have brought Max into an environment that worries him, or gives him anxiety.  

And we laugh.  A lot.  Because Max is learning how to be himself, with all his quirks, and it is funny.

One Singular Sensation.

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.

Just sing

When you feel down about yourself SING! 
Max is singing all the time.  He doesn't know all the words, but boy does he try hard.  His current favorites are the ABC's, and the opening credits for "Play with me Sesame" on Netflix or on Sprout online. 

We are making some big decisions about Max's education in the next few weeks and I will share with you what we have been learning, and researching soon.

Here are a few awesome videos of Max singing: 
(You can even make out most of the words)

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. 

"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. 

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. 

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

Introducing...

BIKE AND BUS!
Our fish.
Max named them. 

It was my birthday this past weekend, and we went to the Pet Store.  Max loved it.  So we picked out some fish.  He loves watching them and pointing at them. 
When we asked what their names were, he had no hessitation - BIKE and BUS!  Of course!  Why didn't we think of that?  The most important things in his life all have wheels, why shouldn't the fish also be named after his favorite things. 

So welcome to the family Bike and Bus. 

The Chase

Max has been playing more and more people games.  Just this past month he has learned that chasing is really fun.  He used to just stand and watch others chase, look and go back to his own world, or would only run away.  Now he comes back and is the chaser. He is participating in the chase.  Dexter and Max LOVE this game, and of course play it any chance they get. They love playing around the couch.  Max has been loving having his Cousin Charley so close because she is also happy to play "The Chase" with him too.  Charley says "I'm going to get you" and Max now repeats it and says "Get you!"

It has been really fun to watch Max learn these last few months.  He is picking up on more social ques and becoming more confident in social settings.  Nursery at church is still hard, and he does things that make the other kids ask things like "what is he doing?"  Or "Why does he do that?"  But he is progressing.  And my doctor has always told me that progress is progress no matter how big or small. 

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.  

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. 

Gratitude

I would like to thank you all so much for the outpouring love for Max and our family.  It has been astounding to read emails, messages, texts, and receive phone calls from friends and family.
Last week I posted on facebook this message: 

The post got the most "likes" I have ever had.  I didn't even realize I had that many friends on facebook who care about my little life.  Thank you for those who have shared Spaceship Max with others.  Thank you for those who read the posts. 

This blog has been so theraputic for me.  It has given me a place to write my feelings and show the good, the bad, and the in-between of having a child who is Autistic.  I hope that I am able to help others.  I hope that I am able to teach others about the Autistic Spectrum.

Thank you all from the bottom of my heart.
I can't wait to continue to write about Max and all of his Space Adventures.  

The Good Day

Max had a great day yesterday. 
A day of no tantrums is ALWAYS a good day.
Nothing huge happened.  It was just a good day.
He called me "Mommy" for the first time.  That was amazing.  He looked at me and said "Mommy!"  We hugged and he knew he did something very good.  
He woke up after a solid night of sleep.  We are still giving him melatonin each night, but that 1mg has changed our sleep and our life. 
He loves his new sand box, and asks to play outside multiple times during the day.  He is in his happy place.  He zones out.  He talks to himself in his own language.  It sounds a little bit like the language from Lord of the Rings.  He is so happy. 

We went to Costco.  There were no melt downs, no tantrum in the middle of isle 3, and he stayed by the cart the whole time.  In the checkout lane he pointed to Will and Said "Dad", and then looked at me and said "Mom" and then pointed at Dexter and said "the B!"  He likes to say "the B"!

We went to our neighborhood party and Max showed everyone his belly, touched a girls shirt that had flowers on it,  and spun in circles for almost an hour.  As he grows he gets more clumsy.  He trips over his feet and falls all the time.  He didn't interact with other kids who were playing but he did run around, smile, giggle and even ate some chips.  Chips are his new found food of choice. 

Max was happy.  He was himself.  His special self. 
These days make me realize how happy Max is.  How the smallest things are huge for him.  How going for a drive and pointing out every single MACK truck we pass is the best part of his day.

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.  

Are we enough?

Will and I talk a lot about Max.  We talk about new ideas we have to make his (and our) life easier, to make his tantrums less, to allow him to enter our world for a bit, and to grow as an individual.
I know all parents have hopes and dreams for their children and who am I to say that our feelings are not similar to other parents.  But I do know being Max's parent is a challenge. There are some days I feel like the worst mom on the planet, and I question my ability to raise such a special child.
I know I am not alone, I know every parent at one time or another has feelings of guilt, feelings of inadequacy or feels like the lack the ability to be a good parent.

When Max was around two Will and I decided that we would start a time-out routine with him if he did something wrong.  We would do the "Super Nanny" approach.  We established mini rules, would tell him no, explain in a very simple way why he couldn't do what he was doing, and then if that didn't work, he would go sit in time-out.  We started out with 30 seconds and we would sit with him.  Then after we would talk to him and tell him we love him.
His favorite activity at the time (and still a favorite) is to throw things.  Clear across the room.  Breaking things, hitting people, and being destructive.  When he does these things it was an automatic time out.  We would put him in time out over and over - sometimes up to 30 times.  Consistency is the key, right? Wrong.  With Max timeouts made everything worse.  He would tantrum the whole time, would kick, hit, scream, hurt himself, and in the end would still throw things.  He wasn't understanding.  He couldn't read our mad voices, he didn't understand our faces, he wasn't picking up on the social cue of "Mad" and it was SO FRUSTRATING.  It is still frustrating. 

Will and I are not perfect.  We yell, and we get mad.  We make mistakes.  But we are trying our best.  We have bad days.

It is hard to listen to people tell us "Oh you are doing so well with Max!" Because on most days he is a challenge.  And we don't feel like we are the right parents for the job.  We are trying not to make excuses for Max.  We want him to learn what is right and wrong, what is socially acceptable behavior and what isn't.  But it is so hard. 

But...then there are days when ONE thing makes it all worth it.  Like when he said "Thank you!" in Costco in the correct context.  Or when he comes and snuggles up to me and we watch a show together, or when he makes his brother laugh and laugh.

Are we enough?  I don't know.  But I do know I have so much love for Max.  And I know he loves me.  Even if he doesn't say it.   

Look but don't touch

My Dad has been in town from New Jersey for the past five days.  It has been really great to have him around.  The last time he saw Max was back at Easter.  Max's Autism diagnosis was still fresh at Easter time and we were still debating on pre-school, therapy and other interventions for Max.  Since then we have made a lot of changes to our daily life, and my Dad noticed.  My Dad said Max is more relaxed and is trying to communicate a lot more.  Something we have been doing a lot of is using Facetime.  I truly believe this has helped Max get to know family that is far away better.  It only took a few hours to warm up to my dad instead of a day or two.  By the end of my Dad's visit Max was giving him hugs. 

While my Dad was here we did a lot of fun activities, but the one I was most excited and also nervous about was the Alpine Coasters in Park City.  Cousin Michael was in town so he also came along for the fun.  We drove up to park city, bought the tickets and waited in line.  Max did great in line.  It was a miracle, because the line was over 45 minutes long.  He played with dirt most of the time and was very well behavied.  When we were a couple people away from the start of the coasters my Dad took him in his arms for a closer look.  The coasters are on a track, they look like cars, and they looked to be perfect for Max.  He was excited, he kept pointing and saying car.  He even identified that he wanted the "bu" (blue) one!  As soon as it was our turn to get on the ride, Max wanted nothing to do with it.  He yelled and squirmed all over Will's lap. 

We tried.  We didn't get mad.  We were glad he was so good in line.  Will, Michael, and my Dad still went on the coaster.  Max, Dexter and I watched as they took off. 

Max really has made leaps and strides these last 9 months.  He truly is growing (literally) and learning.  things take time.  The LITTLE steps are HUGE in his world.