I posted the above picture on my Facebook wall the other day along with the comment "For the people who ask why I "can't control" my 10-year-old or why I don't "beat the tantrum" out of him..."
You see, I used to be one of the parents who rolled their eyes when a child acted out in a restaurant. Or in a store. Or anywhere near me, actually. I'm not proud of that, but I was young, and I didn't have any experience or exposure to a lot of children. I had the thought that I would never have a child that acted in such a way. No would mean no, and my children would learn at an early age that there were certain behaviors that were absolutely unacceptable, tantrums being one of them.
Well, here I am now, and my entire outlook has changed. Not only did the act of having a child change my view once the reality of welcoming an actual person with their own personality into my life hit me, but I have also learned that nothing about a child's behavior is predictable, Autism or not. While any child's tantrum is unnerving and unsettling, the complications when a child with Autism experiences one is heartbreaking. There is no distraction. There is no "wait it out," and there is no way to stop it by "giving in," because their meltdowns don't have a goal. These children are overwhelmed. They are on sensory overload most times, and where a typical child can eventually learn coping mechanisms, these children cannot. They are stuck in a world where oftentimes what is a normal, everyday occurrence for most of us is unbearable for them, and as parents, all we can do is learn our child's triggers and try to avoid them, do our best to keep them safe if they do get to the meltdown phase, and then hold on tight until it's over. It's gut-wrenching to live through, and it's even more upsetting when it happens in public. In my own personal experience I haven't had to deal with too many people making comments, but I have experienced the eye-rolls and the deep sighs on almost every occasion. I'm okay with it, because I was there once. I was ignorant, and I expect most of those people expressing their exacerbation haven't been exposed to children with unseen disabilities.
Part of this blog's purpose is to offer a donation opportunity to people looking for ways to help our son get his service dog, but another is to offer an inner look into our lives. Autism is nothing to be feared, but it is widely misunderstood, especially since the people diagnosed differ so much in their abilities. Ian is considered high functioning, but there are some days and even weeks where he slips back into behavior very reminiscent of his earlier years pre-diagnosis. Most people who meet him think he's a typically-abled child, but for those who have known him and loved him for years, they see what goes on behind closed doors. They see this bright-eyed child lose control in a flash, and some have even witnessed the hours of sobbing and screaming that happen. They have heard our anger, listened to our fears, and they have sat with us while we cried (okay, that's mostly me, and I try to do it behind closed doors). They know about the therapies, the physicians, the two-hour hearing aid appointments. They are privy to my frustration over insurance and school issues, and they are aware of his confusion and anger over the constant doctors and large amounts of medication.
Anyway, my point is, there is so much more going on than what most people see. These children are amazing and wonderful and challenging, yet they live in another reality than the one we do. Sometimes they get overwhelmed, and when they finally end up melting down because they can't process it anymore, there is nothing we can do no matter how much we want to! I consider my family lucky in that we were able to find something that works well for Ian (Nick, the service dog) because a lot of things coming out that seem to help (massages, heat stones, brushing, etc.), he cannot tolerate because of his sensory issues. A lot of families aren't that lucky. They are struggling, and they are afraid that they will never find a way to make their child feel safe and happy. That being said, please be tolerant when you see a child "throwing a tantrum" in public. Be kind, be supportive, and be forgiving. However, if you find that is too much to ask and you can't, then at least be quiet and keep your opinions to yourself.
One of my friends whom I've known for over a decade on-line responded to my posted photo with this comment: "You know, after getting to know more of your struggles and others' over the last few years I've looked at other children's public tantrums in a new light. Something that used to annoy me I now look at with a different attitude. You never know what that child 's history is." If I could have reached through the computer and hugged her, I would have. By knowing Ian's story, it's changed her outlook, and I couldn't be happier! I'm not quiet when it comes to Ian's diagnosis or our struggles, because I hope that in some way, we can make a difference. Education and enlightenment can change things for the better, and if I can help bring a greater understanding to even one person, it's worth it!
