Be My Guest~ He’s “Spectrum-y” but He’s All Mine

It is hard to believe that the month of April is pushing into May already. Part of my plan for my blog this month is to raise my own and my readers awareness of the often misunderstood diagnosis of autism. Earlier this month a friend shared his family’s personal story. Today’s post is written by my cousin Beth. My invitation to her to share her story on my blog has caused her words to bubble out onto the page. I have learned quite a bit about the trials and joys both of these family’s have faced over the years by reading their hearts story. It is my prayer that you, my reader, have as well.

Yes, He’s “Spectrum-y” but He’s All Mine!

“Spectrum-y”….. it’s a word those of us affected by Autism have come to know oh-so-well. Loving someone who is on the “Autism Spectrum” has it’s challenges, but with each challenge comes a bounty of blessings. One learns not to take the little things in life for granted. All the typical milestones, we as parents count on, become less and less important when one of our children has Autism. Getting through a shopping trip without a tantrum becomes the best day ever. The first day you don’t get woken up by the security alarm going off because your child wants to go outside at 4 AM… it doesn’t get any better! How about the first time you can go out for dinner and not have to leave inside of twenty minutes because after that the screaming begins…all these become milestones of an Autistic parent. A mother learns that the “competitiveness” we feel with other Mother’s is so insignificant- we start to appreciate how much a laugh, smile, reaction, kiss or a hug means more than a winning Lotto ticket could ever mean. Only a parent who lives with Autism gets how important it is to have a moment of peace and a full night’s sleep without having someone erupt into a tantrum. The tantrums can be fleeting and usually tolerable, but when it happens in a grocery store and you have to leave a cart full of groceries just to get the tantrum to stop… it’s always exciting. It’s certainly never dull….

My son was born September 5,1998… I’ll never forget that day. Not just because he was born then, but because it was the same day Mark McGuire tied Babe Ruth’s homerun record. All anyone could hear all afternoon was screaming and yelling- and it wasn’t from laboring women, it was from their significant others cheering the ball game! Interesting to say the least. I thought then, Corey would have have such an exciting life, simply because of the day he was born. How those words somehow “haunt” me, but not really in a bad way. Simply because if I knew then what I know now, I would have shut the doors and turned on a movie- maybe I could have had a little “less” drama. More of a sit-com kind of life? Maybe “Seinfeld” or “Friends” or something to “lighten the mood”. But I went with the moment. Sports were great that year, and I don’t even like sports. But, if you have to watch sports, that’s how you watch them. oh, well. C’est la vie…Corey was always a pretty easy going baby-he went to bed great… no fuss, slept through the night at 7 weeks, ate GREAT- I couldn’t get enough food into him! I never knew babies could eat so much. He was twenty pounds at 6 months old! He was chubby and did exactly what he was “supposed” to do as a baby and life was good… or so I thought. It couldn’t get much better, right? Until about the age of one…then it all changed.

His easiness and contentedness would be sharply contrasted by how angry and annoyed he would get, for what seemed like no real reason. Loud noises bothered him, especially music, drastic changes in the weather like wind and rainstorms affected him and not in a good way! And foods became a huge issue- toddlers learn what they like and don’t like, but Corey was obsessed with macaroni and cheese- ALL THE TIME! Morning, noon, night… and if I ran out… believe me, I was at the store no matter what time of day, buying more. The extremes of his tantrums were getting worse. I was told repeatedly that I “spoiled” him or he needed a “beating” to put him in line. My heart knew better. My heart knew there was something else. Corey may have been what I thought was “stubborn” but he was perfect in my eyes and he LOVED his Mom! He never left my side unless it was for close family and he was only happy when I was in view. He didn’t play with kids, he didn’t even a want to look at them and that was ok with me, for a while. But, eventually, it was more and more like he was in a whole other world not a part of ours… and a part of me wished I could be there with him. I knew in the deepest part of my heart, something wasn’t right.

` After months of hearing, “there’s nothing wrong with him”, “he’s a typical boy”, ” all boys are slow” ( between you and me, I never quite understood what that meant?) and “you’re being paranoid” I FINALLY got someone to “hear” me- she asked me if he was ever diagnosed “On the Spectrum”? Nope. No idea what that even means? So, being the “neurotic” person I am… I Googled it…Oh My Gosh!!! Finally! It wasn’t me! He was everything Google said and more! Fast forward about 3 months when I could finally get to see a doctor and yes… he was officially diagnosed with PDD-NOS- a form of Autism diagnosed in children under the age of 6. Now I could get help from school for him- he qualified for services, occupational therapy, physical therapy, speech and language. Yay. What I didn’t realize in the midst of my happy dance, that while Corey would “qualify” for Special Education, I wasn’t prepared for what home was going to be like… here it comes. I still had a daughter to care for, too. Most of my family didn’t believe me or want to know about it- it was embarrassing. The friends that cared to even know what I was going through asked and the ones who didn’t care, couldn’t tolerate his tantrums and they stopped calling. Going out to the grocery store, mall or a restaurant became the most difficult trips- it almost wasn’t worth it. But I needed to get out and be around other people. Strange noises made him scream, smells made him freak out and unfamiliar places put the fear of God into him like nothing I had ever known. What I didn’t know then, that I do know now, was if I educated myself “enough”, I would have known all those things, right? Being a parent to an autistic child is a learning process. It’s also one where a lot of tolerance is learned, too. I’ve had many people stare at me and him, people have told me I’ m a bad Mother- that one came not only from strangers, but from family, too- if I knew how to be a decent parent, he would never act the way he does. One learns to ignore it. But it makes everything just a little more difficult. Other parents brag about how smart their kid is, how talented their kid is, how many friends their kid has- I had a “party” when Corey wrote his name without assistance for the first time… in first grade!!!! The first book he read by himself… in second grade… was cause for celebration! Mardi Gras paled in comparison to how many people I called and celebrated the news with! With his success came struggles- his OCD. He became infatuated with things that got in the way of his day, sometimes. Sea animals was and still is a big one for him- Star Wars, video games, cartoons, Titanic The Movie- but the biggest was penguins. He talked about them day and night, all the different kinds, he had videos, books… we even went to the penguin exhibit in Mystic- to this day years later, he still remembers everything about that one penguin. That one seemed to take over his life, but we all listened and in a weird way, became educated by him. Truthfully, I’m glad he took it down a notch…but no obsession he has now EVER compared to “The Penguins”… that one was tough. We did it, though.

Corey is 13 1/2 now and in middle school. He likes girls, video games, different types of foods for lunch -pizza and cheeseburgers are his favorites, though- he likes to cook, he likes math. I could never understand that one but it makes sense why… it’s predictable, just like he likes it. Predictable. That’s our life. Our whole family life. Predictable. Sometimes boring, but we do it because it works for him- the peace through the process is something my whole family and those closest to me have had to learn. I know, God doesn’t give me what I can’t handle, but I guess what I’ve learned? He can bring it on! I can handle anything! Sometimes, life doesn’t always go the way we want it to and Corey learns that everyday with great difficulty. I see it in his eyes when he’s faced with a sudden change. It seems so minute for some of us, but for him, he works so hard to just get through the day and when he does, there’s a certain gratification he gets from doing a good job… and so do I. Partly because I know how hard it was for him to do it…but mostly… because I’m his Mom and I get to love every single second of watching him.

Thanks to both of my guest bloggers this month for sharing such courageous stories.

Related articles

• Be My Guest Autism Awareness Post (diggingher.wordpress.com)
• Autism Q & A: Is autism really increasing? (babiestobigkids.wordpress.com)