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(Please welcome with me Renee Kiernan, blogging about the realities of living with autism today. Welcome Renee!)
How one parent chooses to deal with people staring at her son with autism, guest post by Renee Kiernan
Do you ever get that feeling that you have no idea what is happening?
Those awkward moments when you are compelled to stare, mutter, or get out your phone to put the entire scene on YouTube?
This happened to me recently. I was with my kids, and my son was capturing all the stares.
Let me back up a bit.
My son has autism.
For him, social situations and communication can be difficult, as well as unpredictable changes, loud noises, light touch, etc. If you have met one child with autism…you have met only one child with autism! Each child is impacted differently, and to varying degrees.
My son is verbal, which we are incredibly thankful, but there are other areas for him that he finds more challenging.
Usually, we only attend the Children’s Museum on ‘Autism Friendly Nights’ because they dim the lights and sounds, and it is less crowded.
But we recently decided to try the Children’s Museum on a different day. So last Sunday afternoon, we took my son and daughter.
Immediately, when we pulled into the parking lot, my son started telling me about the ‘dinosaurs upstairs’ and how he really wanted to see them. My several attempts to explain that the dinosaurs were no longer upstairs, that there was something else really cool instead (the Wizard of Oz), were unheeded.
We decided to head upstairs first, to show him that the dinosaurs were gone. We toured Wizard of Oz at lightning speed, my son searching for dinosaurs around every corner. We went to the Mouse Trap next, a clear favorite in the past! But the siren sounds proved too much. So we opted for the Art Room, which my daughter was clearly excited about.
As my daughter sat down to paint, I heard bongos banging, children chasing each other—and then it happened.
The meltdown occurred.
As the staring started, my son grew even more anxious and uncomfortable. He was trying so hard to regulate his emotions! I tried to find a secluded place for him, but again, there were stares. I found a quiet hallway and gave him ‘big squeezes’, which often help him quiet down.
After several minutes, he was calm. We decided it would be best if we left, and tried another day (Read Autism Nights).
I know hard it is to not stare when a child throws a tantrum, and I under-stand how easy it is to ‘whisper’ comments about how you would parent differently. I have heard others say if can’t control my kid, I shouldn’t take him out in public.
But speaking parent-to-parent, when is he going to learn?
Secluded in our home?
Watching television?
For my family, we have decided that his success will require practice. And we are committed to giving him those opportunities.
Last Sunday, we chose to celebrate his twenty minutes at the Children’s Museum.
And we promise to go out again, despite the stares.
Renee Kiernan developed a desire to write when her son was diagnosed with autism three years ago. She’s a mom to four, and wife to one. She works for a non-profit, educating and advocating for those with special needs in her community. She spends her time listening to what others’ can’t say aloud. Find out more about Renee and her work at http://neprp.com/.
(Thank you Renee, for this insightful, heartfelt, needed blog post!)
You might also like:
“Can’t take much more of my child with special needs”…
Who’s in your pit crew? Parenting a child with special needs
My response to being called an attention whore for advocating for my children with special needs
The most beautiful and terrible of promises, lessons learned from my brother with autism
10 special needs of special needs parents
Stay strong, Renee! Stares and comments can be difficult, but stay strong. How will people (who don’t have kids with it) learn about children with autism if parents don’t take them out? Changing perception is a slow, but worthwhile process – for everyone’s sake.
The stares and comments are getting harder, especially since my little guy is starting to notice them too. An adult with autism described it like her body was betraying her. She wanted so desperately to control her body, but she couldn’t stop flapping, twirling, rocking, etc.
well done! practicing IN the community, so he can have a life outside the home…am finding that more and more people have an understanding for those of us who have ‘different’ children…. LOVE that! the understanding of others won’t happen unless they see and interact with our kids! ps i assume you have told those silly staring strangers that loud noises (or whatever) bother him?! thank you so very much for writing so well, and so respectfully…..
Thanks gracesgrist! You’re right – everyone needs practice! … You should have seen the barbers in the barber shop, the first time my son went there to get his hair cut. Now THAT was a lot of staring!
My son is not autistic, but is a very very rambunctious two year old with a complex heart condition. Because of this, he has to be managed very differently to other kids. I can’t just leave him to “cry it out” when he has a meltdown, as it could cause him to have a heart attack. I think that, and the fact I’m doing this on my own, with very little financial or practical help from his dad has made me quite anxious about going to public places with him. I have to work to keep a roof over our heads, even though, I shouldnt really with his health concerns. We shop in the same shop every week, the cheapest shop around, I’m usually trying to make €30 stretch to a weeks worth of groceries for both of us, plus nappies etc…its tough, so my stress levels are already at their peak upon entering the shop…then My son (who, bless him just wants to be a normal 2 year old) won’t get in the seat part of the shopping cart, or keeps trying to get out of it, or is let out of it and then keeps running off, and when I try to put him back in or, correct him he screams and screams…I hear myself calling his name, over and over, talking to him, calming him down, and am conscious that I am the only parent in the shop doing so…all the other kids are perfectly well behaved. As we make our way around the shop, I become more and more conscious of the stares, of the judgements, of what they are going to tell their friends about this later…by the time we are going to pay for the stuff, my face is red and sweating and I’m about to burst into tears.
I need to develop a thicker skin, and so do you. I need to develop mindfulness during these times, and so do you. To remember that people in glass houses should NOT throw stones, and so should you. To remember that their stares and their judgements say more about them than they do about you. I, and You have to have to have to remember this. Take care.
Thanks for your note, Maxine. And thanks for sharing your story. It sounds like you’re facing a lot, and with little support, I can’t imagine what it’s like for you and your family.
You’re right – we need a thick skin to get through, what some would consider ‘easy’ tasks, like going to the shop. It’s easier to explain this to an adult, but now that my son is getting older, I am having to explain it to him as well.
Thanks again for your comment.
I loved this–thank you for sharing, Renee!
The stares aren’t usually noticed by my daughter (she’s visually impaired in addition to autism) but I feel like I break into a sweat when I see people watching her meltdowns which only makes an already stressful situation that much more stressful!!! I appreciate your encouragement to keep trying new things, providing opportunities for my daughter to learn.
Thanks Rachel! Would love to hear about one of your success stories too!
You help everyone you meet understand the true definition of motherhood. Having had exposure to moms who can only be happy when their kids are honor students, star athletes, ballerinas, debate club participants, beauty queens and clothed and socially acceptable, are quite possibly those engaged in conditional love for their children. God gifted us with our children and many don’t understand that he put them in the right homes with the right parents…it is the parents who many times are the ‘challenged ones’. You don’t just ‘get’ your son. you love him. While it is often hurtful to experience the fear, judgment and discomforts of others in this world as you exhibit your love, please know that God didn’t give this passionate, creative, tender boy to them for a good reason. You inspire me. Hang in there.
Thanks Steve! A good word, brother!!
Wonderful article Renee!!!!
Thanks Jane!
As the mother of an Autistic son whom has major aggressive behavior I have seen the stares and yes I too can understand why people stare however it does make the situation so much worse for the child and especially the parent. Yes, practice is the key. But a message to those who stare please try and look a little more sympathetic rather than shocked or judgmental! We are having a hard enough time or day, or week, etc without the added judgement! Also I have business cards made with my son’s picture and what Autism is and i pass them out to people when they are giving those non preferred looks. Generic ones are available at TACA and other Autism websites. Good luck to you and your family Renee
Thanks Stacey! That would definitely be helpful! What was the feedback you received after giving someone a card about autism? I really like that idea!
Stares make most of us uncomfortable … How much more so an autistic kid! Great reminder! Thanks!
Thanks for the comment, Ann!
Thanks for a great article! As parents of a 12 yr old autistic son, we often feel like we can’t go places “normal” families go or else one of us takes my younger non-autistic son places, while the other stays home with the 12yr old. Because “it’s just easier that way”. But then sometimes I get my courage up and decide I don’t care if people stare, my son deserves to go out to eat or to the zoo or to a store, and I do not want him to become a hermit just because he has autism. We even got brave enough to fly down to Florida this summer, to go to Disneyworld and thanks to some great relatives who helped us and the “special needs pass”, we had a great time! My son did great and only had a meltdown at the airport when we got home. The people at Eppley got a eyeful, but we handled it and moved on.
Whenever people make comments I usually just say “Actually he has a disability” – Then their reaction or reply gives you a good idea what type of person you are dealing with. If necessary this then determines my next response which is all dependent on how I am also feeling that day.
Things I have used in the past range from:
“Oh well, at risk of repeating myself, he has a disability, but it looks like you are the one who has the problem, you should really get that checked out!” …
and…
“I think you may have watched too many ‘perfect family’ TV Cornflakes commercials” …
As you can imagine neither of which is conducive to a great outcome, however it’s amazing how empowering it is.