Taking the "Stares" (from Kayla)

If I could teach one thing about Autism, it’s that everyone is different. People should also know that just because someone looks like a “typical child” it doesn’t necessarily mean they are.

One of the hardest things for my husband and I is the staring. When Hudson is in full meltdown mode the staring from others is sometimes harder than the actual meltdown. I imagine all the people with their eyes glued to us are thinking, “I would whoop my kid’s butt if they acted like that” or “Why don’t they leave? They’re not teaching him anything.” They don’t have to say anything I can already tell they are judging my parenting. Sometimes I’ll get a pity smile, and honestly those can be just as hurtful, too.

The thing is my child is a beautiful, blonde haired, blue eyed boy. He’s got a 100-watt smile. You’d never know he is Autistic by looking at him, and that’s the thing. People see him melting down and think that he’s a spoiled brat. They don’t see him for who he is and understand that he is struggling internally and literally cannot help himself.

This past weekend is a perfect example; we were all experiencing cabin fever and needed to get out of the house and do something fun. After a lot of debating my husband and I decided to take our boys to a large children’s museum. We knew it might be a struggle for Hudson, but we also knew he might have a great time. We prepared ourselves and set out for the day. It started out fantastically, even at the busy restaurant where we stopped for lunch. I thought for sure he’d meltdown when we saw the long line, but we were able to get in and out without a fight.

Once we were at the museum everything continued to go well, but then we saw a train ride. It had a somewhat long line and my anxiety immediately crept up. He had already noticed the train, so we knew there was no skipping it. Fortunately, it had a play train nearby, so I told my husband I’d take the baby and save a spot in line for Hudson while they played with the train. I thought it was a no-brainer, but I was wrong. Hudson noticed me waiting in line and immediately broke down. There were some toys in line to play with, so I handed the baby over to my husband and let Hudson stand next to me and play with them. Wrong again. He continued to lose it. I did everything in my power to calm him down; I did breathing exercises, did deep pressure points, I hugged him tight, and just spoke calmly as possible to him.

Everyone stared at us. I so badly wanted to apologize to the families next to us, but I knew if I opened my mouth to speak to them, I would lose it. We eventually made the ride with nothing hurt but our pride. While I was glad that I was able to stay calm during the wait I was mad at myself for not having the courage to speak up for my son.

And yes, I could’ve taken him away from the train and moved on, but I know that would not have solved anything. Not only that, it would’ve been unfair to Hudson. He deserves to ride that train just as much as any other child in that line. I also firmly believe that the more we continue to expose him things that are difficult for him; such as lines, that he will eventually learn and conquer the waiting. Just like anything else in life it all takes practice and if we were to avoid lines every single time, I think we would be failing Hudson.

So, next time you see someone struggling with a child who is having a meltdown I encourage you to not judge, not stare. You have no idea what the struggle may be or what they are trying to overcome. Instead, offer a sincere smile and maybe a high five. It could make all the difference.

First Letter - "Hudson's Story"

Hudson is an incredibly gifted four year old boy. He is currently obsessed with dinosaurs and prehistoric sharks, but also has a love for monster trucks and cars. On the surface, you'd think that he was a typical boy. 18 months ago, he was diagnosed with Autism.

At a very early age, Hudson began to exhibit many of the tell-tale signs of someone on the Spectrum. He would line up his cars in perfect rows, and stare at the details of their wheels for several minutes on end. He would flap his arms when excited. His speech and motor skills were delayed. But my wife Kayla and I were first time parents when we had Hudson, and didn't give much thought to these signs early on.

Kayla is the Librarian for our school district, and I owe her the world. Without her desire to dig in and learn more about Hudson's behavioral patterns, we wouldn't have gotten him the help that he needed as early as we did. I traveled for work frequently during Hudson's first year, leaving her to conduct research and eventually arrange sessions for therapists to come and observe Hudson. Without her efforts, Hudson would not have gotten into Early Intervention as early as he did - or gotten on the track towards diagnosis.

Hudson began receiving Early Intervention services not long after his initial observation occurred. This involved a Special Instructor coming to his daycare to spend time working with him on various activities. Kayla started us on this journey, and Hudson's Special Education Itinerant Teacher (SEIT) pointed us in the right direction. I'm not sure if she's on Facebook - or will ever see this group - but we are incredibly grateful for all that she did for Hudson, and for pushing us to get a diagnosis.

Having a young child tested for Autism is a difficult challenge in and of itself. It takes hours of phone calls, pre-screening paperwork, and patience. LOTS of patience. When we first obtained our referral to have Hudson tested, we were told that it could take 6-12 months for his tests to be scheduled. As a parent, a week of not giving your child the help they need feels like an eternity! After 9 months of waiting, we were finally given a testing date.

Kayla and I made the two hour drive to Syracuse the day before Hudson's tests were scheduled. It was the last typically normal day we would have with Hudson, before our definition of what "normal" is would change drastically. We went to the zoo, visited the mall, and had as much fun as we possibly could. Hell, we even agreed to booking a timeshare presentation vacation in Myrtle Beach on the drive up (that vacation is a story for another post)!!

Diagnosis Day seems like a blur now, but it was a rough one for us. We got to the testing site early in the morning, and were warmly greeted by the receptionist. The office had a small play area for kids, and Hudson immediately immersed himself in a steering wheel on the wall that had mirrors above it. We were told that the doctors would come in to see us shortly. 10 minutes later, a team of doctors and therapists walked in. They briefly introduced themselves to us before ushering Kayla and I into an observation room, while taking Hudson into his testing room. Kayla and I were in tears at this point; trying to listen to the doctors in the observation room while watching Hudson through a two-way mirror. He was at a table in a strange room, with people he had never met asking him to do a rapid series of tests. We tried our best to listen to what the doctors were saying to us, but our minds were focused on one thing - Hudson.

We broke for lunch a few hours after his testing began. When we came back to the facility, we heard the words that we weren't fully prepared to hear - "we're diagnosing your son with Autism."

A lot has happened to our family since that day. We have had good days, bad days, laughter and tears. We added another son to the family and do the best that we can to give Hudson everything he needs.

My hope is for this blog to be a place where we all feel comfortable sharing our stories. Autism Awareness is growing, but it's still very difficult for the world to really understand the Spectrum - and how it impacts people differently. Kayla and I have good and bad days all the time, and I hope that you find something helpful in reading our Letters From the Spectrum.