Just thinking......

I remember when I was little and my biggest worry was if I was going to have enough time after school to play outside. I loved being outside. I loved the fresh air. My brothers, sisters, and I made trails in our back yard for riding bikes. I’d spend hours just riding around the trails…sometimes with my brother and sisters, and sometimes alone. As long as I was outside, things were good.


After having my youngest son, Cody, I realized that my love for the outside wasn’t going to be “shared” with him. You see, Cody has Autism and with his Autism, he has unusual and extreme fears and phobias. The number one phobia of my Cody is BEES. Don’t get me wrong, I know that NO kid really likes bees BUT they don’t let that “fear” or “dislike” interfere with their lives. My Cody will NOT play outside if the sun is out. It doesn’t matter how many times people tell him that there are no bees outside. It doesn’t matter to him if someone tells him that it’s too cold for bees. His mind tells him what HE believes, and up until this day, we have yet to find a way to help him “persuade” his mind any other way.

Picnics, beach trips, even amusement park trips are put on hold for us unless the “sun is down”. Sometimes we can actually get him to the beach with a little white lie (bees don’t like water) or sometimes to the amusement park (keep moving and the bees can’t catch you), but it’s not very often. It is so sad how this phobia of bees have taken over my little boy’s life. He is 8. He shouldn’t have the anxiety that he has, yet we can’t find a way to lessen it. Medication works a little, but right now even that is on a hold.

Before the bee phobia, it was a tornado/storm phobia. Have we ever had a tornado, here in Syracuse, NY? Not while my little guy has been alive. We’ve had our fair share of storms though. Like the bee phobia, this also ran his life. He’d be in his Kindergarten class hiding under his desk rocking back and forth while the tears stream down his pudgy little cheeks. He’d stare out the window at the wind and rain and just be beside himself. Teachers didn’t understand his fears. Kids definitely didn’t understand his fears. It seems like only his Mommy understood and was it more that I understood, or just tried so hard to, I do not know. We couldn’t leave our house if there was a storm brewing. He knew the house was safe and that is where he needed to be. We’d pull the shades and he’d just sit in the middle of the living room floor rocking back and forth, back and forth, as the tears silently fell. It is so heartbreaking to watch your child have so many fears and not being able to help him in any way. It is crushing in so many ways.

And that is just the phobias. The sensory issues are almost just as bad. When Cody was a baby, I bought the cutest little matching outfits. Gosh, I loved picking out clothes for him. But by the time he turned 1, things started to change. He could only wear a few brands of diapers (luckily one was a cheaper brand). He hated his hair combed (and he has the cutest strawberry blonde hair). The little baby that once loved baths, threw fits everytime I got near the bathtub. This was the start of all the sensory issues. Today, at age 8, jeans are a “no way” for my little guy. Actually, believe it or not, there is only ONE style of pants that he can wear that don’t “hurt” him. It doesn’t help that each pair costs over $40. YIKES! Shirts are a bit easier for him. I can find a few at Gymboree and Old Navy, but the majority come from Hanna Andersson (thank GOD for that store). The majority of his clothes are organic. Not that I’m that “gung-ho” about organic items, BUT they feel so good for him to wear. My sweet Cody went through months where he could only wear his unders. There were weeks that he could wear nothing at all. It was terrible. He missed a lot of school due to those issues. Luckily, we got him back in to clothes. Yeah, they might be the same style every day, BUT he likes them and they feel good and that is all that counts. Do I get kind of sad when I see other kids sporting their cute baggy jeans and their handsome polo shirts? Yeah, I get a twinge of pain, but I try not to let it bother me. Things could ALWAYS be worse. And if my little guy can only wear sweats and t-shirts, then I can deal with that.

It makes me really sad when I see Cody playing with other kids and they don’t “understand” his way of playing. You see, Cody sees a movie and he “plays” that movie. He plays it like he just watched it. The other kids don’t understand that. They don’t even know what he’s doing. They just see him getting frustrated because they weren’t playing the way “Cody wanted” so they walk away, leaving my little guy even more frustrated. I try and explain this to Cody, but he doesn’t really understand himself. I want him to have friends. He does have a few close friends that are just like him. I like to see them play. They seem to “understand” his quirks because they have the same quirks.

I get so frustrated myself when I take Cody out and people judge us. It happens a lot. The other day we were at Walmart and I told Cody that he could have a chocolate milk after we were done shopping. So we finished (and he did so well), and we walked to the McDonalds and ordered a chocolate milk and what did they say? “I’m sorry, we are out of chocolate milk”…..UGH! It sunk into him before it did me. I felt his hand tighten in mine. I knew what was coming. There was no way around it. My child was looking forward to this. It may be small to someone else, but to him, it was everything. And Cody can’t “deal” with unexpected changes. So out came the blood-curdling scream. Yeah, it’s a scream that I personally can’t stand. It makes me cringe each time I hear it. But it comes when Cody doesn’t know what else to do. Scream, then run! Not that he wants to run. He just needs to get away and running is all he knows to do right then. I stand there, trying so hard not to be embarrassed on what just happened. Why should I be? Cody has a disability and this is just part of it. But it’s so hard NOT to be too. I feel the tears well up in my eyes as I quickly turn to run after my son. He never goes too far. He goes to where no one else is then he just falls to the floor and cries. So here I am running after him while trying so hard to ignore all the people’s stares and remarks. Sometimes, I just crack and say something back to them. Sometimes I don’t. That day I did. Some older woman took a cart and pushed it into my son and backed him into the wall. What the hell? She proceeded to tell him how bad he is and how he should be spanked. My son was in beyond hysterics by now. I grabbed her cart and shoved it away. Cody had scratches on his arms where she pushed him into the wall. I yelled at her to mind her own business and she had no right to judge him when she knew nothing about him. She then decided to tell me what a bad mom I was and how I am the prime reason why kids shouldn’t be having kids. I was 30 years old when I had my son. I call that a far cry from being a “kid”…whatever. Anyways, I sat down in the middle of the floor, not caring what anyone else thought. I cradled my son in my arms and rocked him back and forth (he loves to rock). The lady was still there saying some mumbo-jumbo, but my mind was back to calming down my son. I finally got my boy back and we walked through the staring crowd out to our car. He fell asleep on the way home. His meltdowns take a lot out of him. They take a lot out of me too.

Some people say that I’m babying Cody. That if I spanked him for his behavior, he’d just miraculously “get better”. Don’t get me wrong, Cody does get in trouble. A lot actually. He does have consequences for making bad choices BUT I will NOT punish my child for not being able to “deal” with his emotions. That is part of his disability. Instead of punishing, I sit and we talk about what he could have done. Not that he remembers that the next time, but in time I believe he might. If my child hits another child or says not nice things, yes, there are consequences. And no, he doesn’t like the outcome, but I stick to my rules. He is 8 years old and he does cause the “8 year old trouble” that the “other” 8 year olds do too. Yes, it’s hard for me to know what part of it needs discipline and what part needs “reassurance” but in the end, I feel I’m doing pretty damn good. If someone doesn’t think so, I really don’t care anymore. God blessed me with my children because he knew that I could teach them and nurture them in the way that they need. My children ARE my life. I will bend over backwards for them.

So am I sad that my child has Autism? I’m not sad that he has it. I am sad that others don’t understand and “accept” him with it. I am sad that the world is such an ignorant place. I am sad that sometimes, even I crack and say things I really shouldn’t and hate myself later. Am I sad that my son is autistic though? No, that is MY SON. Autism is part of my son. Who would he be without his quirks? He is special just the way he is. I just wish the other people in the world could see and feel the same. 