Thursday, January 14, 2016

If you've met one person with Autism...

My oldest son Recker is five years old and was diagnosed with Autism at 16 months old. We spent years learning all there is to know about Autism, Sensory Processing Disorder, all the therapies (OT, PT, SLP, Hippo, Feeding etc..), doctors appointments, everything that went along with having a child with Autism, or so we thought. 

A few years later we found out we're pregnant with another little boy. We were so happy but also a little nervous. We knew the odds of having another child, especially another boy, ending up with Autism as well, were not the best. We told ourselves that when/if that day came we could handle it. We already know what we're doing, right?

Fast forward a year and a half and Déjà Vu...There we were going through the early intervention process and meeting with developmental pediatricians and specialists to find out Ezra has Autism as well. Even then, in that time when he was recently diagnosed, we really believed we already knew what we were doing, it couldn't be that much harder than what we went through with Recker...

We were so wrong!!

If you're apart of this Autism community you've heard the phrase "If you've met one person with Autism, you've met one person with Autism." Meaning that every single individual on the spectrum is completely unique in the way Autism affects them. We learned this very quickly when it came to our two boys. Recker and Ezra are opposites in almost every single way except for the fact they're both male who are nonverbal and have Autism. Its that simple. Here are a few examples of what I'm talking about...

RECKER: Has a sleep disorder and sometimes averages 4 hours a night.
EZRA: Tucks himself into bed most nights and has been sleeping through the night since 6 weeks old.

RECKER: Sensory Seeker
EZRA: Sensory Avoider
EXAMPLE: When we walk into say a big bowling alley with flashing lights and loud music and people everywhere. Recker is in his element, he is calmer and he is ready to run and play. Ezra on the other hand is clawing at the door trying to stay outside, he is covering his ears, closing his eyes,  sometimes crying/screaming and clinging to us for dear life.

RECKER: Play for him is all about running, climbing and jumping off the highest point he can find.
EZRA: He is more on the tamer side and would rather sit and stack blocks or look at a book. 

RECKER: Can't sit still long enough to make it through opening credits of even his favorite movie.
EZRA: Usually can be caught sitting all the way through the end credits of any movie.

RECKER: Very empathetic and caring, he cries when you cry and goes out of his way to comfort you if you're sad or hurt. If he accidentally steps on your toe, he will look at you and touch your toe and say "I'm sorry"
EZRA: Doesn't understand emotions so much, and can be pretty aggressive. He loves to throw things very hard in close range directly at my face then laugh. 
EXAMPLE: Recently I was home with my boys and fell and dislocated my knee, i screamed out in pain and in true form Recker ran to me looked at me concerned then started crying with me. Ezra on the other hand had fallen over from hysterically laughing at me. Then added insult to injury by throwing cheerios at me hahaha 

RECKER: Would rather be left alone to do his own thing, he almost is bothered by us constantly trying to interact with him.
EZRA: Thrives off any kind of attention. He is entirely motivated by positive verbal praise and he would gladly be attached at my hip if that were an option.

RECKER: Still to this day after being in speech therapy for almost 4 years he is nonverbal. He is able to repeat words when fully prompted, and will sometimes be caught echoing a phrase or two from a movie (right now its "P-I-E...PIE" from word world) But he is unable to independently communicate with words, signs, a device, pecs or even gestures.
EZRA: Is also nonverbal but is able to say a few words and signs independently without prompting. He uses the word and sign "MORE" for most things he wants. But he is trying very hard and picks signs up pretty good. He can get our attention, and he will try to tell me what he wants and when i don't understand him i can say "show me" and he will guide me to what he needs and point at it. 

I could go on and on with how opposite they are but the list would never end. Our boys are so different from each other and you can imagine how that makes our day to day life pretty hard and tricky. If you take anything away from this remember that just because someone has Autism does not mean they will automatically be like any other person you've met or know of who has Autism. I have never to this day met another child with Autism that is like my boys or anyone else. Autism does not fit into this cookie cutter definition of "rain man" or even the amazing Temple Grandin. That is not what Autism typically "looks like." Autism looks different to everyone. Both of my children have Autism, came from the same parents, same genes, same house, same everything, but they are entirely different. 

Autism is hard. Impossible some days. But these amazing boys of mine, while they are completely opposite, they work so hard everyday to adapt and live in a world that is not readily adapting for them and for that I admire and love them so much for that.