Today I am happy to feature a guest post from my friend Jill. Take a moment to read about her story and her beautiful boy Mason
My life was forever changed on December 20, 2012 when I heard the following words…
“Your son has an Autism Spectrum Disorder”
Those words make you numb. And still. And your brain goes silent.
And that is not the worst part.
An hour later after you have digested what is told to you, you have no idea what to do next. That fear is basically debilitating.
Imagine being a parent, and being so overwhelmed that you cannot grasp what you need to do to help your child.
I have found that people take very lightly the diagnosis of ASD (Autism Spectrum Disorder), and I am really not sure why.
My son is extremely good looking (seriously. It is really true. Look at his picture hehe). He smiles. He hugs. He does not “seem” like Dustin Hoffman in the movie Rain Man.
What people do not know is that his receptive and expressive language skills are in the first percentile. Yup-that is right- the first percentile. The next percentile is off the charts and not in the good way. Only one percent of children for his age have a worse understanding of language.
But listen to me…THERE CAN BE HOPE.
Ok I know. My son Mason is only 2 years old and there is no way to know where he will fall on the spectrum later in life.
But what I can tell you is that being aware and being proactive has helped Mason so much.
April is Autism Awareness month and I really think awareness about the spectrum disorders is very very important. I feel like everyone is “aware” of autism but they do not really understand it and therefore there is widespread panic or just the opposite, a shrug of the shoulders.
I knew nothing of Autism Spectrum Disorders before I had Mason. I was one of the people who heard of autism, thought it would be horrible to have a child with autism but…that is about it. I knew people with the disorder were “in their own world” but that is really all I knew and to be honest, I really had no idea what that meant.
My first “clue” that something was up was odd play behaviors Mason was showing. As a baby, he would flick objects on toys instead of do normal things that babies do-bang on the floor, try to hit buttons to make things light up. He would only “play” with toys that had something he could flick. As he got older, the flicking turned to spinning. Any toy with wheels he was fascinated with. He would turn toy cars over and spin the wheels. I remember he had a toy basketball net when he was 10 months old. I could never get him to put the ball in the hoop-he had no interest. He ignored me when I tried to play a little basketball game with him. All he did was spin a wheel that was on the back of the toy.
I decided to google “baby spins toys” and everything that came up had to do with autism.
Later I would learn that this is called stimming
I googled signs of autism in a toddler
To my horror I read the following:
The following delays warrant an immediate evaluation by the child’s pediatrician:
- By 12 months: Lack of response to name.
- By 12 months: No babbling or “baby talk.”
- By 12 months: No back-and-forth gestures, such as pointing, showing, reaching, or waving.
My heart broke in 1 million pieces.
Mason did not respond to his name.
He did not babble- He actually only made one consonant sound which was a “d” sound.
No gesturing. At all. No bye bye, no reaching to get picked up, no reaching for his sippy cup. No pointing. Ever. Never to a picture in a book. Never to a bird in the sky. Never to show me something he was enjoying.
I took these signs very seriously and contacted our State’s Early Intervention Department.
Now all am going to say about Early Intervention is this- if you have concerns…CALL. IT IS A FREE EVALUATION PEOPLE!!!. Not calling is not going to make a problem go away, it is only going to make it worse!
I did get some push back from people who were of the “wait and see camp”. Not me. Everything I read about autism was that early intervention was KEY for autism treatment in toddlers. Not that I knew for sure that Mason had autism, but he was displaying the main red flags.
Somehow, through a lot of strength, I was able to get over the initial denial that there was an issue. It was right in front of my face. He was now 15 months old and I had no idea when he was hungry or thirsty. He did not understand a basic command like “bring mommy the ball”. He had no awareness of where he was. Sure he hugged and smiled. But to me he seemed to be in his own world. How could I choose to look the other way? How could I do that to Mason?
We had our Early Intervention screening and as I thought, Mason was very delayed. At 15 months, he scored between a 7-9 month level in the areas of language (receptive and expressive), Cognition, and Social and Emotional behavior.
Mason began seeing a Developmental Therapist once a week for an hour. Now, that does not seem like a lot of time, and it really is not. But a big part of Early Intervention is follow through from parents at home. I did everything we worked on in that one hour throughout my entire week.
It was frustrating the first few months because I really saw no progress. And then all of a sudden…it was like things started clicking for Mason. He could get me a ball if I asked, he began to point at pictures, he waved hi, he walked over to his high chair and stood there when he was hungry, he brought me his cup when he was thirsty, he understood that objects had names.
I still felt like something more needed to be done. Mason still had his obsession with spinning toys. He still had no words and almost 1 and a half. He still used very limited gestures (like I am talking the bare minimum). I felt this warranted an autism evaluation.
No mother is prepared to hear the words no matter how prepared they think they are. I felt strong, ready to face what I knew was coming. But I overestimated myself.
We took him to CNNH for his evaluation. It was a very tense day.
Mason was administered the following tests:
Mullins Scale of Early Learning- (LINK)
Adaptive Behavior Assessment System.
At the end of the session, my horror was confirmed.
Mason was on the Autism Spectrum.
I will never forget how I felt that day. I felt my heart turn black. I was so very sad.
But I was ready to face the challenge. I knew I had done what is best for my son. I want to look back on this time and have no regrets, wish I had done something sooner. I want to know that I did everything for him so he can have the best life possible.
I chose to face this head on because of Mason. I chose to understand the disorder. If I do not understand it, who will for Mason? I am his advocate, his number 1 cheerleader.
Mason turned 2 on March 1st. He is a completely different child than he was in July. In February, we had him reevaluated by early intervention to see if he qualified for speech therapy (um…I would say that was an easy one since he only said 2 words). The therapist who evaluated him was the same one who did the evaluation in July. She COULD NOT BELIEVE it was the same child. She was so happy to see the progress. We added an hour of speech therapy to his week.
Mason now attends a preschool for autistic children-it is actually an inclusion school so he interacts with peers who have no developmental delays. The school performs ABA therapy in the least restrictive environment. We are hoping to get 30 hours of ABA approved for Mason by our insurance company. (What a nightmare, but that is another story).
Next month, we will be participating in the Walk Now for Autism Speaks walk for Autism. Our team is called Mason’s Monsters because we are monsters who are not scared of anything! Even Autism Spectrum Disorders! I chose to do this walk because I thought it would be something fun to look forward to, and a good way to continue to educate friends and family on Mason’s disorder.
I hope my story has brought awareness to some, and hope to others.
I do not know what the future holds for my son. I am scared
Sometimes I get so overwhelmed I want to curl up into a ball and just give up.
But then Mason will walk up to me and clap twice (he just learned how to clap a few weeks ago), rest his head on my leg, and smile at me.
I long for the day when he will look at me and say “mama”.
That alone is motivation to plug forward on my crazy, unpredictable yellow brick road that leads to the unknown.
It’s my very own yellow brick road.
And Mason is guiding my way.