To the Editor:
Yesterday, a mom posted a heartbreaking letter on the Hoboken Mom Yahoo group. I would like to share it with you, as we are in April—Autism Awareness Month. She has followed up by saying that her inbox has been exploding with love and support from the Hoboken mom community. This is her post: “Autism at Columbus Park–An open letter.” Hello fellow parents, My son has autism. I love him beyond words, but I live in a pressure cooker. As we all observe Autism Awareness Month this April, I think it’s important to really support families affected by autism. On that note, I highly recommend you all take a moment to read this article. This will give you a big insight into my life. http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/ Today was difficult. I rarely enjoy my time at the park, but I must go, because my son needs exercise and fresh air just like any other child. If anything, he needs it more than a neurotypical child because it helps him regulate. But that’s a different story all together. Today, I was having a surprisingly peaceful moment while my son happily swung on a swing. My baby sat in my lap, and I took the moment to catch my breath. A mother leaned into my son’s face and repeatedly told him his time on the swing was up, and it was time to give others a turn (I could feel my heart speed up, as I was just waiting for him to push her away.) I called to her and explained that he is on the autism spectrum, and if it’s all the same to her, please just understand that he just got on only seven or eight minutes ago, and we are on edge today. She told me it wasn’t fair because of the few other kids that literally just started waiting. She then said “Fine, but then you need to explain to the other kids why they have to wait.” I hesitated for a second out of both panic and disbelief. She then said, “Fine, then I’ll do it.” I looked at the other mom I was sitting next to, hoping for some support, and I said “Just when I get a second to myself, right?” She looked off into the distance. I wanted to cry. She turned a blind eye. I would have been the first one to step up and support a mom in my position. Sad. I then got up and pleaded with my son to move on to the slides or something. I walked back to the original mom, hoping to explain what was happening. I showed her my shaking hand and told her that park situations are always filled with anxiety for me. I really thought she would have backed down, but she gave me a condescending “Well, I’m sure it’s really rough. I just feel really bad for the other kids waiting who all know they only have two minutes on the swing. Why are the rules different for him?” Whoa. First of all, who said anything about two minutes each? You?? Who put you in charge of the park rules? Second, I know for a fact that those other poor kids that maybe had to wait a few extra minutes will do just fine in life. Maybe they should learn the hard lesson of tolerance and patience. They will go on to live great lives (God willing), and my son will have struggles academically, socially, and physically. And third, the rules are different for him because he is different. He has autism. Sadly, what I knew was going to happen is what happened. Minutes later, my son got angry. Really angry. I had to accept the kindness of a total stranger who offered to hold my baby, who I had in an Ergo carrier, so that I could attempt to calm down my son who was kicking me, hitting me, and grabbing my face. Where were you then, oh queen of all things ruley and just in the park? I was hysterically crying, just completely overwhelmed and humiliated. I could feel the stares burning my back. This is all because you couldn’t or wouldn’t understand (or maybe you did, and just didn’t care) that my son simply needed another five minutes on a public freaking swing. And in addition, you wanted me to tell his peers that he is different and needed a few extra minutes? On another happier note, I would like to send love, peace, and warm wishes for life to the two mothers who were loving, supportive, and helpful during the epic meltdown. Every time I thanked them, I started to cry again. In fact, I’m crying again just writing this. I have been in that situation alone more times than I could ever count, and your kindness and compassion saved me today. Please, everyone, skip the blue shirts and really show your support during Autism Awareness Month by reading the article above, and by loving and supporting moms like me at the park. We need you more than you realize! Sincerely, Struggling Every Day.”
And her follow-up post was just as touching: “I am truly humbled and touched beyond words by the support I have received. I have received more than 30 personal emails that I am still getting through. I have felt nothing but sincere, genuine love and support, and I have a renewed faith in the Hoboken mom community. I mean that! I actually considered not posting what I wrote, and was just going to consider it therapy by releasing my thoughts. I’m really glad I didn’t because I have had so many of you tell me that you honestly don’t know much about autism but will now read up on it to be more mindful in the future. I believe that complacency breeds ignorance, and I will be damned if my son grows up in a world that doesn’t understand or accept him for all his glorious quirks. So thank you, lovely women (and the two dads I also heard from)! Thank you for being open minded enough to want to learn more, do more, love more. Sheesh. Now I’m crying again! Tears of joy this time.
BETH LYNCH