Mason’s Yellow Brick Road

I never imagined I would have a special needs child…I don’t think anyone does.

My son Mason was diagnosed with autism when he was 21 months old. I always felt something was “off” with his development but I brushed it off as being a new mom.

At 15 months old he had never babbled, never waved, never made a sound other than crying or shrieking. He did not respond to his name. He had never gestured, never mimicked. I thought he was deaf. I wasn’t sure he knew who I was.

He had every Autism red flag.

Mason also had a very unique skill. He could spin objects. I had never seen another child do this before. He was not even 2 and he could throw a quarter in the air and spin it. He would spin everything. When he was around 18 months old I googled “toddler spins objects”.

If you google “Toddler Spins objects”…this is what comes up:

  • Childbrain.com/PDD/Autism
  • Signs of Autism. Mom Answers
  • Autism Symptoms in Toddlers

Anyway…you get the idea.

Early Intervention

At that point, like many other mother’s, I was still in denial.  So, I sought out Early Intervention to ease my fears. I was hoping they would come out and tell me I was a nut job…but that didn’t happen.

At the end of the evaluation I was told my son…who was almost 17 months old was developmentally between 7 and 8 months in the areas of social, language, and cognition. He obviously qualified for early intervention.

Thankfully, I loved our therapist! But we were only receiving 1 hour a week and then I had to implement everything that the therapist did in that one hour.

I did not feel like a mom. I felt like a therapist.

All I wanted was for my son to point and say “mama”. At 21 months I knew we needed more help so I scheduled an autism evaluation and his diagnosis was confirmed…My son had Autism.

I thought to myself  “If we do this now…it will be gone and he will go to kindergarten and be just like everyone else.” It was my own form of denial. I know a lot of people thought I was crazy. I actually FELT crazy.

I felt like a clock was ticking in my head and that if I got Mason help RIGHT AWAY….his autism would go way.

Applied Behavior Analysis (ABA)

When Mason was 24 months he started intensive therapy at an ABA/Inclusion school. It was a great school with a nursery, Pre-K and Kindergarten program.  The autistic kids were in a class all day with neurotypical kids and got pulled out for ABA therapy.

In the beginning of ABA it was basically as if the therapists had to teach Mason to learn. He had never mimicked in his life and he was 2 years old. Think of a baby doing “So Big” or clapping when an adult claps. Mason never did that. He literally would just sit and spin objects.  The first thing ABA worked on was mimicking and once he was able to do that, I felt his world opened up.

In the beginning it was SO REPETITIVE and honestly it reminded me of dog training and I cried my eyes out the first few days. ABA uses positive reinforcement as incentives for the kids to participate. When Mason was 2, he had no interests other than spinning things and looking at fans.

So, his positive reinforcement had to be food. I watched them work on mimicking. I watched the therapist touch her head, and say “do this” and then put her hand over Mason’s hand and touch his head.

And then she gave him a cracker.

I was seriously like WTF. I felt like I was watching my dog being taught how to sit.

The therapist explained to me that it would not always be this way, that Mason developmentally was at an 8-9 month old level so there was really nothing more they could use other than food to get is attention. I got it, but it was hard and I questioned if I was doing the right thing.

I will never forget the day she said “Do this” and touched her head.

And then Mason touched his own head.

We both jumped up and screamed and I think I cried. He was 25 months old.

Once Mason was able to mimic, ABA became a bit easier. He began to be able to mimic sounds, sitting down at a table, building with blocks. He moved away from food as incentives and began to make requests like watching a fan or ringing a bell.

Once a skill was mastered he never lost it. The incentives were not needed and we could move on to something else. I felt as if I was watching a baby develop…except now he was almost 3. Eventually he began to gesture. And then babble. Oh, and before he could talk, he could say the alphabet backwards. Mason is hyperlexic but that is a whole other thing to get into another day.

Accepting Autism

Mason was progressing and gaining language…but so were his peers. I felt like we were playing a never ending game of catchup.

And I remember the day I felt like a frying pan hit me in the face and I said to myself…”this is not going away. This is who he is”

He was probably around 3.

It was the day I truly accepted autism. It was the day I decided I needed to be “helping” my son, and not trying to “cure” him or make him into a different person. Once the invisible frying pan hit me in the face, my brain felt like it slowed down.

Making Progress

We continued ABA and Mason began to develop language. He used echolalia to communicate which is typical for verbal autistic children. Near his 4th birthday, he began to speak in multi word sentences. But, he was still not potty trained and he still did not understand birthdays or holidays.

Actually, he would SCREAM if anyone sang happy birthday and holidays were pretty much a disaster. He hated Halloween, Christmas was too much. You name it.

On his 4th birthday I accepted the fact that my son would never understand his birthday.

In his ABA program, his BCBA really wanted to work on having him be able to sit through a birthday party and the song “Happy Birthday.” I felt defeated. He hated it all.It caused anxiety. And I will never forget what she said to me…

“Jill, he is going to hear Happy Birthday his whole life. If we can eliminate this as a point of anxiety, why not try?”

It made sense to me.

They would practice birthday parties. Practice opening gifts. They recorded me singing on the Ipad. They worked on social situations like the dentist, and hair cuts which were both nightmares. They worked on winter clothing tolerance which was also a nightmare. I could not get a coat on my 4 year old. They created visual schedules so he could understand what was coming next and eliminate the difficulty with transitions

Mason received 20 hours a week of ABA therapy from the time he was 2 years old. There were days when I worried he would never speak or be potty trained. I seriously felt like I had no idea what was going on.

Mason is Now Six

He lines up everything-including all his toys. He asks me to “play” with him, and he just lines up toys and we look at them. The funny thing is though…it is such a huge part of his personality, I crack up every time we do it.

He is obsessed with snowmen, and Christmas decorations and singing Christmas toys with buttons. He talks about Christmas non stop. He socially scripts- this means that when he has a conversation with someone, he takes something he heard someone else say, or something he heard on tv and he applies it to the conversation in the correct context.

Sometimes he has THE EXACT SAME CONVERSATION with me 5 weeks in a row, and if I do not say what he wants me to say, he repeats what he is asking until I say what he wants.

He is obsessed with days of the week, he MUST know his entire schedule for the entire week. If something changes in our schedule, I have to let him know or it is a recipe for disaster.

All of this is part of his personality and I love everything about it.

The beginning of his life was very hard. I try to explain to people that my son had to be taught everything…nothing came naturally for him. That made for some hard days.

Now, in ABA, they work on school work and social situations and his incentive is playing outside for 10 minutes or watching a video on the ipad.

He understands holidays. This past Christmas was the first time he truly “got” it. We did Elf on the Shelf and he loved it so much and he named his elf “Pen”. (Literally he looked around the room and saw a pen on the floor and that is how the elf got his name.)

He kind of understood his 5th birthday but his 6th birthday was really the first birthday he was excited for. He even picked out his cake…Frosty the Snowman…for a March 1 birthday.

Right before his 5th birthday he was officially potty trained. I feel like this past year and a half he has bulldozed through development. He will go to a typical school for 1st grade and be in a general education class with also a special ed teacher and a 1:1 aide to start out.

Autism is Still Autism

I want people to understand that yes, Mason has mild autism, but it is still autism. There will always be challenges. We have to use a timer and have everything on a calendar. There are times when he is not socially appropriate for a 6 year old (for example he doesn’t understand why he cannot strip down naked and jump into a baby pool).

If we go the “wrong” way..it is a huge issue. If an event does not take place in the order he thinks, it is very difficult to get him on track. I know as he gets older we are going to probably face situations I have not even thought of.

People say to me all the time “Well, he doesn’t look like there is anything wrong with him”

It is very frustrating. Yes, he looks completely typical but I wish these people knew his history. They don’t know he had to, and still has to, be taught what comes naturally to neurotypical children.

If you have met one person with autism, you have met ONE person with autism. None of these kids are alike and all of their challenges are different. Our kids work so hard and deserve so much credit.

I did not want to be here…but here I am. Here we all are. And I could not be more proud of all of us and our amazing children!


Jill is a dear friend of mine and blogs over at My Yellow Brick Road.

Written by Jill Potter

Interested in guest posting on Finding Cooper’s Voice. LEARN MORE


This article was submitted to Finding Cooper’s Voice by Jill Potter. Her son Mason was diagnosed on the autism spectrum at 21 months. Jill is a working mommy who actively advocates for her son and actively supports new parents beginning their autism journey. Jill shares their journey at My Yellow Brick Road.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.

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  • Lauren

    April 6, 2017 at 11:15 pm
    Reply

    Wow, thank you for sharing your story. It almost feels like you are relating my own story with my three-year-old son, Bear. He was diagnosed […] Read MoreWow, thank you for sharing your story. It almost feels like you are relating my own story with my three-year-old son, Bear. He was diagnosed at 18 months and has been in intensive ABA therapy ever since. Like your sweet Mason, he is doing amazingly well and people constantly say it looks like there's nothing wrong or it must be very mild autism. I've had a hard time lately with that because, like you said, no one really understands all the work we've done to get to this point. It's an ongoing journey to help him catch up to his peers. Thank you for verbalizing that! Read Less

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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