A personal guest post from my dear friend, Laura. She is a warrior mom to her son, Zachary. Her son is gorgeous. Like a mini-Elvis gorgeous. You know before he got old. Laura is an incredible photographer, gorgeous inside and out. Her smile lights up a room.This is her feelings on autism awareness and why she struggles to define what it means to her.
A day where many Facebook posts are made showing supporters wearing blue shirts, lots of puzzle piece memes floating around, and posts declaring support for family and loved ones affected with autism.
I struggle with this day for so many reasons. Mostly I’m grateful for the support and recognition for my son and his friends who live with autism. But I also try so hard to be a little vulnerable and allow people to see into our world of struggle, meltdowns, heartache, therapy, triumph and successes. But this is where the ‘awareness’ part of ‘autism awareness day’ comes in. I have to be strong and let people see that we do struggle daily with our own ‘norms’ and having the outside world understand what our ‘normal’ looks like.
We are very lucky this year because Zachary received a service dog last summer. His service dog accompanies us out into the public and is trained to do various commands to assist Zachary to stay calm in stressful situations and also to keep him safely by my side when we are out in the community. Because we are accompanied by this magical dog wearing a bright red “Service Dog” vest, any meltdowns Zachary has in public is usually met with sympathetic gazes in our direction and maybe even a word of two of support when the meltdown is over. Having our dog with us, without words, says “This person has a disability and he is behaving a certain way BECAUSE of that disability”. Nobody questions it. It’s AWARENESS.
Before our service dog, public outings were an enormous source of stress for us. What if we got seated in the restaurant and Kelly Clarkson would come on the radio – (her songs are a HUGE meltdown trigger for Zach, usually resulting in such loud shrieks that my ears hurt). The stares and murmurs from those around us would burn into me. Silently and not so silently judging me and my obvious lack of parenting skills. “Why can’t she control that child? Ugh, My kid would NEVER act that way!” The possibility of these scenarios would keep us home living in fear of judgement because there’s very few people who are aware of what sensory overload is.
And the truth is, unless you live it or know someone who lives with it or have it yourself – why would you be aware? Because awareness equates empathy. And if there is one thing parents of special needs kids need, it’s more empathy and less judgement.
As a parent of a child with autism, any time I hear another child crying in a public area I look to see the parents. My first thought is not “what’s wrong with those parents”, it’s “I wonder what triggered that?”. But that’s because we have over 4 years experience here in Autism Wonderland. And I know that meltdowns, whether coming from a typical child or an atypical child, are always triggered by something. I’m aware that parents feel dread as soon as their child starts to behave in a way that draws attention. But the parent who is greeted with a sympathetic glance and a few simple words – “We’ve all been there!” – would have their whole day made into a better one. Simply because someone was AWARE that maybe that child is experiencing difficulty on a different level. Maybe that child has autism… If more people are aware of the difficulties that children like Zach face every day, then we’d achieve the success that ‘Autism Awarness Day” promotes.
Thank you, Laura. For being my friend. Thank you for your honesty and willingness to share. Thank you for sharing your boy with my girl. Thank you for being one of the first Spinn moms to reach out and to hold on. For more information about autism or if you are struggling to find answers please visit Autism Speaks
I love your honesty and your outlook. This is the first I have ever heard of a service dog for autism and I think it’s fantastic. It looks like Zach loves him! I don’t have a child on the spectrum but since I started blogging and have read and gotten to know moms and their kids that live with autism, I have a whole different outlook and more of an understanding. It will never come close to what all of you live with daily but I feel at least I can offer support and, yes, empathy….especially in real world life. I am far less apt to think ‘lack of discipline’ now. Thank you again for sharing your story. You have a beautiful family.
I know exactly how you feel. In fact, I just wrote about it today! Thank you for providing an honest outlook as I think more of that is needed.
Great post. Because I’ve been “there” more times than I can count, I always give a reassuring smile, comment in solidarity and even sometimes try to help. I’ve been at this so long that sometimes I don’t’ even hear outbursts – I’ve become so numb to them (and admittedly relieve to not have a staring role!)..
Oh I cannot stand when people give that look. Sigh. My son has taught me so so much – I always give the tired mom a smile now. My son is pretty good about dealing with outings but when he feels like he can’t do something he has this awful cry and it’s just sad. In fact, we had somebody at the park look at us like we sucked as parents just this weekend. Great guest post, Kerri – thanks for giving us your friend Laura’s words and outlook!
Please don’t recommend Autism Speaks. They have been consistently hostile to autistic people – featuring a video in which a mother says in front of her child that she’s contemplated murder-suicide and then defended that video by claiming that all parents of autistic children have felt that way at some point, suing a 14 year old autistic kid for putting up a website parodying their organization, dismissing an employee because her autistic child’s care needs resulted in her taking time off, the list goes on.