Please, don’t stare…

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I remember a specific time, when Jonah was 3, that I needed to make a trip to the local craft store to gather fabric for a Halloween costume that I was working on with a friend that evening. I had just put baby down for a nap and had a small window of time to go to the craft store, get my fabric and head to my friend’s house. For some insane reason, I offered to bring my son with me. I wanted to spend time with him. I explained to him that we were going to my most favorite store and that he needed to be a good boy and obey mommy. Looking back, I realize that I was either dreadfully naive or completely insane! Probably both because I suffered from major sleep deprivation and fantasy ideals of bringing my son into an environment that I enjoyed so he would too.

I let him look around the store and he ended up playing on the foam mats. But 3 year old boys quickly escalate semi-fun situations to ultimate-fun-destructive-crazy-loud (and embarrassing their mother) situations. Before I knew it, he was crazily pulling out twin sized foam mats onto the floor and jumping on them like a scene from WWF and dragging them throughout the isles, caking them with store floor dirt! Ahhhh!!! In my favorite store! My reputation was at stake here. I frequented this store! People knew who I was! I couldn’t risk getting kicked out!

It probably took me over 15 minutes to get him away from those mats and redirect him (kicking and screaming) to the fabric area. Once there, the fun continued. Jonah played peek-a-boo running crazily in and out of crowded fabric isles. I ran after. Tried to cut him off and catch him and finally gave up. I had to get my fabric. I was on a mission and a time constraint of course.

I finally picked what I needed and went to take my number realizing that there was a sea of faces surrounding the cutting table. I think I was number 725 and they were currently helping number 2! Ahhhh!!! Everyone in the entire valley had come to buy their last minuet halloween fabric. They were all clutching their precious 40 percent off coupons in their sweaty little hands. I considered leaving, but knew I was there to get the job done and was on a time constraint. How hard would it be to wait there with an antsy 3 year old? Again… insane and naive. We would have to wait. And wait. And wait. I believe it took around 45 miutes of waiting. It was a great bonding experience with my son. That’s what I wanted right? I ran after him through isles and isles of fabric, returned to the foam playland over and over again, and once I finally had a proper restraint on my son, he proceeded to lay on the floor and jam his little 3 year old foot into my crotch and kick me over and over and over!! If I picked him up, he punched me in the back, face and stomach. As soon as he was down on the ground the kicking to the crotch continued and out of my child came maniacal little laughs from a messed up little face that was torn with boredom and overstimulation.

And the people watched. All 724 of them. They scowled and looked disapprovingly at this mother that could not discipline her son properly. And I felt like a pile of slop being poured out all over the ground. Unfit and unworthy of being a parent and knowing that somewhere I had screwed up bad enough with my child, that I could not even control him in a simple fabric store! Overwhelmed with feelings that I was such a bad mom because I choose to bring him with me there, instead of the park. And because I had no choice of leaving and coming back without him. We were stuck and I had defeated my intentions to love and spend time with my son. Devastation, anger, resentment… I wanted to scream at the line of disapproving onlookers and say ‘Why can’t I go next?! Do you not see what I’m dealing with?!! I don’t know what’s wrong with him! It’s been like this every moment of my life since he was born! Don’t stare! Help me!! Help me!!’ But I said nothing. I suffered in silence. Sucked back the tears and put on a plastic face of calm and disinterest.

After a lifetime of waiting and a sore crotch, I walked up to the cutting counter. My son immediately took off back into the fabric. The onlookers continued to stare. I told the lady the dimensions. Did not engage in eye contact or conversation. But something did happen at that counter. My ‘inner red’ or my inner strength emerged. It was a defining moment for me. You see, I knew I was being judged. I knew I was being watched. I knew I had disappointed everyone in that fabric line. But it didn’t matter. They did not live my life. They didn’t see his turmoil, feel helpless for him during his inconsolable rages, love him more than life itself only to get attacked over and over and over. They didn’t matter and they were not kind. My son mattered and teaching him to control himself mattered and showing him unconditional love even when I wanted to knock him to the floor mattered. So I took my freshly cut fabric,  tackled the kid as he ran out of an isle, forcefully slung him over my shoulder and marched him to the checkout counter as he flailed, laughed maniacally and screamed guttural screams hanging backward over my shoulder. You’d think I was carting around a mini demon!

And then we got to the check out line… and all 724 people that had recently cut their fabric were waiting in at least a 45 minuet line, clutching their little precious 40 percent off coupons in their sweaty little hands. They all looked at me with my demon child slung over my shoulder as I walked to the front of the line and announced (very difficult for a major introvert) ‘I’m going next. You DO NOT want to wait in line with this child’. No one said a word. They looked at me in shock. I turned away, went to the next check out stand, forcefully plopped my kid down on the counter and made my purchase. The clerk did not exchange words with me and nor I with her.

I’m sure there were words exchanged after I left the store that day, but I don’t care. I’m still proud of myself for standing up for my rights as a mother to know when enough is enough and to put my foot down in front of a disapproving audience. You see, parents of children with disabilities struggle with more than any onlooker could ever, ever understand. What you see from an autistic child’s melt down at a store is something that parent sees every hour or every day, or so it seems. When my child is raging, he is absolutely inconsolable and has very little control over his impulses, actions, words (if he can form any) and physical reactions. It is terrifying to me and to him and over 7 years of experiencing this, I have learned to cope and calm him, but this behavior still cripples me momentarily. I have endured him raging in his room for what seemed like hours slamming his head into walls. Or having him lay at my feet, back arched, eyes rolled back, foaming at the mouth and uttering guttural screams like a demon possessed child. All in the name of autism and at the time explained by everyone as normal ‘boy’ behavior. Seriously?! Even the professionals were hesitant to put a name to the behavior and so this mother formed many, many coping strategies. Life was stressful in those early years and there was a constant level of tension that I carried around daily.

I became the ‘super calm’ emotionless mask of a mom because any form of emotion seemed to set my child off. We thrived off of routine and I feared even an unexpected trip to the grocery store because even that had the potential to make him absolutely crazy! I did smile and play and get frustrated and yell…, but when I could see him physically change, I knew we were in for a rage and my coping strategies took over. My reaction was misconceived by my husband and mother as a lack of discipline. Absolutely not! You see, I knew that the ‘normal’ way of dealing with certain behaviors didn’t seem to work with mine. He understood his world differently, explored it in great detail and raged if things were out of order. Looking back, I wish I would have had that one person step in and point out his rigid behavior. I didn’t have a smart phone at that time in life, so easy googling of these symptoms wasn’t routine, but I was also being told by everyone that it was ‘normal’ boy behavior.

But I digress. This past year has been so much calmer. I find myself understanding the temper, successfully communicating actions and feelings and seeing very positive results from my big 7 year old. His diagnosis (although devastating at first) was the biggest relief since the day that child was born! I have finally been able to forgive myself for his behavior and accept him for the little man that he is. It’s not his fault, it’s not my fault, it’s not societie’s fault and not his daddy’s fault (well, maybe a little). NO one is to blame. But everyone can help. You see, autism is being more readily diagnosed, but it is still socially very misunderstood. The parents and family members who experience an autistic child in their daily lives are forced to see the world in a completely different way. I believe that over time, our society will begin to understand and hopefully embrace autism instead of fear it, embrace these brilliant little God made people. The change starts on an individual level. If you see a child raging out of control in the store, don’t stare… ask if they want to go in front of you in line. Give them your spot in the fabric cutting line or let them have some space when playing at the park. If we can all be aware of our surroundings and actually notice that there are kids with special needs around us, we can become more sensitive to their needs and just understanding and offering a kind word means the world to a parent who lives daily in the darkness of autism.





One thought on “Please, don’t stare…

  1. No words…just love. Love this letter, love you, love your heart. I had no idea what you’ve been going through all these years. I’m so sorry. Thank you for making us all more aware of what goes on around us. I hope and pray that I will act on this knowledge when I’m around someone who’s struggling. Thank you.

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