Heather Panko

Kevin’s Story

I have always known my son, Kevin, was different. He hated loud noise with such a passion that I dreaded the 4th of July, New Year’s Eve, and even the fireworks at Disney World. All these things caused Kevin to have terrible meltdowns where he’d scream, hold his ears, and cry until I removed him from the situation. I even took him to Tavares to see his favorite train, Thomas. However, every time the train blew his whistle he would come apart at the seams once again.

Kevin and I visiting Tavares to see Thomas the Tank Engine. His cousins had their pictures taken with Thomas, but this was as close as he was willing to get. We put him in soccer at the local YMCA when he was three years old and Kevin cried the whole first game. After that he would stare at the grass and made no attempt to play. His father and I were beyond frustrated. We were paying for this! Why wasn’t he playing?

Then as he got older my mom pointed out the hand flapping. “You need to have him tested for Aspergers,” she’d say, but I always brushed it off. My son is perfect, how could she suggest he’d be autistic? It was heartbreaking and I didn’t think my son was less than perfect. Soon he went into school and was one of the smartest kids in his class. He’d finish his work long before his peers and cause disruptions as he’d talk to those around him. For these reasons his teachers let him help his peers who were struggling with their work and answer questions of his peers who simply didn’t understand.

Everything seemed fine… But then I noticed other things. Kevin hated heights! And I mean screaming at the top of his lungs, pulling on my arms, and legs at the top of water slides until I hesitantly picked him up and carried him down the stairs. The same thing happened when we went to Disney. Waiting in lines was horrible! He’d be screaming and crying while holding onto my neck. I’d try my best to comfort him and reassure him that we were safe, but Kevin wouldn’t hear it.

At school things were getting harder as he progressed into the next grade. He started having meltdowns as soon as he dropped his backpack inside our house. I’d sit with him and comfort him, all the while trying not to cry because I was frustrated, what happened at school? Why won’t you talk to me? Are you being teased? I met with his teachers and they couldn’t give me any insight. Kevin participated in class and did all his work, so why was he so upset?

The answer came from Oliver, Kevin’s cousin. Kevin was being made fun of and teased in after care at his school. “Why didn’t you tell me?” I asked Kevin, but he only shrugged. My heart broke once again, why didn’t my son confide in me? Didn’t he trust me? We put Kevin in karate so he’d learn to stand up for himself and defend himself if need be… And that went well… For a while…He managed to get his yellow belt

Now Kevin was also old enough to be a part of our church’s boy scout program. Jim did all the paperwork he needed to do to be one of Kevin’s leaders. He was looking forward to spending more time with Kevin and helping him achieve some badges. However, it didn’t last. He hated being in the spotlight and would completely shut down. He wouldn’t answer questions or do as he was told. He’d stare at a spot on the carpet and refuse to look you in the eye.
My boy scouts <3

Jim and I decided these were battles we couldn’t win. We were going to stop forcing him to do things he didn’t want to do. We were exhausted of fighting with him and ultimately feeling like the bad guy when we’d force him to go to boy scouts, gymnastics, karate, and even church. They didn’t seem to benefit him as he’d “mope” the whole hour or three hours we were there.

It was around this time that Jim and I had received our answers. We started taking Kevin to counseling once again because of these meltdowns and wanted professional advice of how we could better help him. The first day upon meeting Kevin, the counselor took me aside and suggested we have him tested for Aspergers. Remember my mom suggesting that? So after seven appointments and after long hours of being evaluated the results were in. Kevin has Aspergers, a high functioning form of autism.

But what does this mean? I went home and announced it on my Facebook wall, asking for advice and good books to read. I wanted to be well informed so that I might understand what awaits us and also how may I better help my son. Right off the bat people offered me condolences and told me to read Jenny McCarthy. I wanted to cry and scream, “There’s nothing wrong with my child! He’s different, yes, but still perfect!” Instead I ignored these comments; but I wanted to say, “My child is different and vaccines did not cause this!”

Luckily, I have a friend on Facebook that was and is a huge help. She messaged me that her son was diagnosed with Aspergers at a young age too. They found answers in Tony Attwood books and suggested that we buy “All Cats Have Asperger Syndrome” by Kathy Hoopmann for Kevin and his friends to read. So that’s what Jim and I did. We read the book with Kevin and explained to him his diagnosis, what it means and how it affects him. He’s still perfect, not less of a person. We don’t love him any differently. It just offers explanations and gives us an insight of what his shortcomings are going to be. Top of the list is communication. Many of his meltdowns are because he’s frustrated with himself. He can’t find the words to describe what it is or how he’s feeling and/or thinking.We, too, highly recommend this book

Also we’ve learned that people with Aspergers generally have “sensory overload”. They hate loud noises, like fireworks, and even fans in bathrooms. If there’s too much going on at a theme park (too bright, too crowded, too noisy) again Kevin breaks. Even if it’s a ride we went on a thousand times. Every day is different. He may decide he doesn’t like his favorite foods anymore, that he no longer likes his favorite color, or has a new fear…

People with Aspergers have “irrational fears”. Kevin’s are and have been: anything scary which includes but not limited to: scary movies, scary costumes, spooky scenery, spooky sounds… Halloween is usually an interesting holiday to celebrate with Kevin. Sometimes he’s brave while trick-or-treating and when we get home he’ll sleep in our bedroom because a costume he saw, or decoration, when we started walking hours ago he now can’t stop thinking about or picturing.

Once Jim and I took him to the zoo to go trick-or-treating, thinking it was going to be kid friendly and Kevin would have a blast since he loves animals… It ended up being a horrible idea! It was nighttime, the place was fully decorated with all kinds of Halloween decorations and Kevin ended up wrapping his arms around my waist, burying his face in my side, and Kevin refusing to open his eyes. We looked at the animals far from the haunted houses, got ice cream, and left.

Kevin still doesn’t like to be in the car at night. If he is he’ll cry or bury his face into the seat. For a long time he thought when the wind blew it was monsters moving through the trees, getting ready to attack us. Another time he was scared that the stars would fall from space and kill us; and just recently he’s gotten over his fear of heights and enjoys roller coasters and water slides.

Oliver and Kevin on Space Mountain. He still fears being away from me for any extended period of time and airplane rides, which we don’t fight him on these either. Anything to make my little guy feel safe. We accept him for who he is and knows he will do these things when he is ready. Not when others say he is ready.

Because many don’t understand Kevin or what it’s like to have a child on the autism spectrum we get a lot of criticism. I’ve been told that I coddle him, to let him “grow up”, and other hurtful phrases, however, I am Kevin’s advocate. I know what’s best for my son. I’ve seen him grow a lot these past few years and every time he conquers a challenge my heart rejoices! It’s really the little things: telling me about his day, initiating play with his little brother, waiting anxiously for our turn on a ride, initiating conversation with our new neighbors, asking to have a sleepover. Things that parents whose child isn’t on the spectrum take for granted.

Yes, my heart still breaks when I tell people Kevin has Aspergers, but mainly because people don’t know how to react; or when I explain to Kevin’s friends why Kevin doesn’t want to do something. I know Kevin would if he knew how, but feelings and expressions are still something he struggles with. I don’t ever want him to feel less than perfect, yes, at first the thought crossed my mind, but that’s our society. We’re programmed to think that it’s our fault our child is autistic and had he not been given the vaccine he would’ve been perfect! No, if not for the vaccine my child’s immune system would be vulnerable for diseases that have killed so many in our history! Vaccines keep my child healthy and strong! Kevin was always different, but not anything less than perfect! This diagnosis takes nothing from him! Just clarifies his struggles; and we all have them!

So to those who say I coddle him, you’re right! Because what good parent doesn’t want to protect their child as much as she/he can while they’re young and while we still can! Because once they enter adulthood they’re going to learn that the world is a cruel and scary place on their own… And who wants their child to grow up too soon? They’re only children once and then it’s gone. It’s time you’ll never get back… So I say enjoy them being young… Kevin is already 15, almost 16, and in another 10 years he’ll be 26 going on 27 and I’ll be reminiscing of when he lived with us, playing games, and wanting to snuggle. So I’d rather say I made time for that and I remember that than “I wish I would’ve”…

I do what I think is best for my son. If you have a problem with that then it says more about you than me. I am my son’s advocate and when Kevin is 20 and he’s thinking about me, he’ll say “my mother loved me more than anything else because she always did what she thought was best for me”.I am now 4 months pregnant with Kevin’s little brother.And now he and his brother are my everything <3

Living with disabilities,