What Do You Think?
It was his shirt that first caught my attention, but I only had to read a few of the words to know what it said. He was staring at something deep into the earth at a point no one around him could see, and he was rocking back and forth slowly. Back and forth. Back and forth. Back and forth.
Stimming. Obviously.
I was waiting for my bag to be checked by the security guard. She stood with the backpack wide open, but continued to look at the woman beside me as they conversed. They discussed Kennywood's procedures for lost children. The helpful security guard directed the concerned mother to pick up a bright yellow bracelet that could have a name and phone number written on it. Going the extra mile, the security guard also explained a little bit about a local program for "sensitive" animals for autistic children.
The mother was a seasoned veteran, but she was still very interested in the security guard's words. Her son was probably 8 or 9 years old. According to his t-shirt, he was autistic, mostly nonverbal, and likely to behave in ways that may not be expected by some people. His shirt explained that he may throw temper tantrums for no reason and that he sometimes doesn't understand how the world is supposed to work. There were a lot of words on the shirt, practically a novel.
The near-novel started with bold type that declared, "I am autistic . . . "
A simple statement.
I'm not entirely sure how I feel about that statement.
On one hand, I completely understand why the mother would want to educate the world. It's not about making excuses, it's about teaching people that sometimes the unexpected is actually the expected. It's about keeping her son safe. It's about helping people understand a little bit of his perspective. It's about doing whatever she can to make a day at an amusement park a little bit more enjoyable for everyone around her.
But it's also a label. How much must it suck to feel like you need to slap a label prominently on a shirt? Shouldn't that little boy be able to go to an amusement park and just have fun like anyone else, free of judgements and strangers' stares? Does he really have to explain himself? Can't he just *be* for a day and not worry about what everyone else thinks?
What if we all wore shirts that explained why we may behave differently and what might set us off?
I admire that mother for accepting her son so fully and for caring so deeply that she made that shirt for him, but I wish we lived in a world where it was completely unnecessary.
And I hope that entire family had as much fun as Alexis did that day.
Monday, July 18, 2011
Reader Comments (33)
My younger brother has Asbergers Syndrom ( a form of autism) there are some days when having that shirt on his back would save people from staring and wondering why he doesnt like certain foods or why he acts the way he does in school. I do agree it may give the little boy attention, but in a good way. I do hope he and his family had a great day at kennywood.
I understand your ambivalence, but I think it's better that a special child be recognized as such rather than presumed to be ill-behaved or dangerous.
Unfortunately people do judge, and if that shirt saves that child from one ignorant adult it's probably worth it. I wish it were different but it's not.
How many people have special children in their lives? How many people know what to expect or how to respond? I'm guessing very few. It seems only natural to me that the vast majority misinterpret some special behavior as ill behavior and indicative of lax parenting. I think I might. I have no special children in my life, but I might recognize a few of the common behaviors; the rest of the time I suspect I'd misinterpret.
As a parent who is staring down a PDD/Asperger's diagnosis (not yet but my kid "scored high" for PDD behaviors, score's high), and having to explain to family how my normal seeming child could possibly have a problem I kinda of (though not completely) understand where she is coming from.
Having to explain why my child is the way he is, is a pain and some people just don't get it.
And yes, I think we can all appreciate a world with a little less judgement.
I agree...I wish we lived in a world where that shirt was unnecessary, and that boy (and his family) should be able to just go to an amusement park without explanations. But that ain't the way it is. Considering that it was at an amusement park, a hectic, noisy place that can attract such a mixed bag of people, from the littlest kids to potentially unruly or cruel teens, I think the shirt was great. It was a buffer between for her son, a possible diffuser of uncomfortable situations, an enabler of compassionate and teaching moments. So I think the shirt was wonderful for that situation. But if the shirt is this boy's daily wear, for trips to the store or a restaurant, then I think the label is too heavy a burden to carry around his neck.
Maybe I'd feel different if I had a special needs child, but I really find it hard to casually assume folks who don't understand or know all the details are cruel or judgmental. Does nobody else believe that a strangely behaving special needs child could easily be mistaken for a misbehaving ordinary child?
As a support worker in a group home with 5 adults who have autism, I have to say I would never, ever, ever even consider this. It sounds like a good idea at first blush...but I'd urge everyone to think about how embarassed you'd be if your husband made you wear a shirt stating "I have Post-Partum Depression. I may look sad, or cry for no obvious reason. Just ignore it". I know I would personally feel terrible- like I wasn't an acceptable human being, and I had to be labelled as'different" because I was so subnormal.
Certainly, people will misunderstand, and lack education, and judge. But the way to solve it is not to slap a giant wall of text explaining your child's quirks on him. Let them look. Let them see what someone else's normal looks like. When people question myself or my coworkers when we're out with the people we support, we simply tell them "this is normal. We're fine. Thank you for asking". We don't offer private medical information to strangers, or treat our clientele as different or weird.
What other people think or do shouldn't be the concern. The only concern should be "is my child happy?" And I promise, if he knows what that shirt says, he's more embarassed than anything else. Jars have labels, not people.
1) I feel bad that this mom feels as if she has to explain to everyone, you know she just knows she and her child are being judged, she's obviously been through it. How that must suck. There will be the anti-kid judges. Then there will be the holy-mom judges. Then there will be the generation-judges. Its everywhere all the time.
2) I understand and in theory agree with Katie here and think she is wise :)
3) It was just in the last 5 days or so a friend from FL posted on their facebook wall a news article about a 17 year old with special needs who had been chased and tased and beat and cuffed by police after they tried to stop him for riding his bike the wrong way and he ran. A shirt like this could have helped? Maybe not.
I usually just read, and don't comment openly too much, but this struck something in me. I used to work for a nonprofit agency that aids mentally handicapped individuals. I loved what i did there.
That being said, i can see why this mother chose to label her son in that way. What if he gets lost? And a good person like you or I try to help him? He would be TERRIFIED. And if we didn't know that he was non verbal, or that he had sensory issues, or any number of things, you could approach him the wrong way and he'd just run away, making it harder to find his mom for him.
It may not be the most PC thing to do, and it may be placing a label, but there are people out there that are so ignorant that it breaks my heart, and they would just assume something was wrong with him, and not try to help.
I have a hundred stories i could tell. But my point is it was more for the boys safety should he get separated, should he misbehave, or say the wrong thing to the wrong person. Weapons aren't allowed in the park, but thats not to say that if he yelled at someone, someone who didn't know or didn't understand that they would react badly.
So for the situation, as "Jonathan" said, it works. Teens are cruel, adults are rude and judgemental, and children tease and don't understand.
Not everyone is compassionate, understanding, and tolerant to people who are just a little different.
And thats a shame because i've met some really awesome Autistic children, and some really awesome people with Aspergers. I have a cousin who has a disability.
They may not use the shirt all the time - but amusement parks are the kind of place you most likely need something like that - large crowds, more chance of getting lost (and needing the help of a stranger), and waiting in long lines. I can understand wanting to put it out there in those kinds of situations. After experiencing WDW with Ed on a scooter and an "invisible" handicap and having people stare and assume he was just lazy, I can understand a parent wanting to avoid having people think the child was just bad, or that they weren't parenting properly, or that they are line jumping (because the child can't handle the line)
I spent a summer teaching autistic kids, but moreover, my nephew is autistic and mostly non-verbal*. This isn't a minor problem where if we treat the child normally, they will act normal. Quite the opposite, in fact!
Part of the problem is that these children do not register social cues the same way as other children, so they are unable to tell when they are overstepping boundaries with people.Moreover, they are not capable of understanding when someone is telling them "No," they do not register the tone the same way as we do, much less more subtle ways of communicating displeasure. When in crowds, we really do rely on these social cues as a society, something these children are unable to process -- and often strangers do try to "help" not knowing their actions are actually detrimental. But also as a consequence, the children are likely to be unaware of the implications of a "label" on a t-shirt.
Realistically, it would be fantastic if we had better knowledge spread into the public about the signs of autism, and better ways of approaching them. Of course, we are only just learning what is productive or not for autism care -- so some of this is truly wishful thinking on my part. But if we at least understand the signs as a general public, and can learn to back off and let the parents do what they need to do, that would alleviate the need for a t-shirt. But until that time, it might actually be best to say, "Please understand that this child has special needs," in some obvious way.
As a total aside, if the child was already rocking upon entrance to the park, it is clear that he was overstimulated even coming in the door. Non-verbal autism leads to a lot of frustration, because the child is unable to explain what their needs are; and overstimulation is a very big problem for autism in general. It is highly unlikely that the child would have been able to have a good time at the park if he was overstimulated even at that point -- I am given to wonder why the parents did not consider this aspect, and promptly remove him from the stimuli.
* My nephew is still only 4, so we have hope that he does learn how to communicate. He has made tremendous progress at his school!
I somehow completely agree with every one of you.
Should the mother really care if other people pass judgment when at a place like Kennywood? It's such a mixed bag of types of people and pretty much no kid makes it through a day there without some sort of odd behavior. Alexis lost her mind on the Jackrabbit, for example, and I'm sure we looked like the worst parent ever for those 30 seconds or so. I didn't care about appearances at the time, but I'm not in a situation where I'm constantly getting those sorts of looks.
Safety issues are a whole other thing, though. If I thought putting a t-shirt on Alexis would help keep her safe, I'd slap two on her. Maybe three.
@Gwendolyn--The gates/security turned out to be the busiest/most crowded part of the entire park. He may have been overstimulated at that point, but it may have turned out fine once he got past all of the people. Hopefully.
As the mother of an autistic daughter--It got easier for me to manage her behavior in public once I got over worrying what people were thinking about her and her behavior--She has just as much a right to go places as others and I don't feel I need to explain her behavior--I also work not to judge other parents for letting their children behave impolitely or letting them dress in ways I feel are inappropriate--every one has some kind of parenting challenge --it is hard work and parenting skills and styles are very personal to all of us.
I agree with both sides. I'm not sure what I would do if I were his mother.
But sometimes I wish I could wear a t-shirt that says "NO TOUCHING! NO TOUCHING!" so that people understand that I don't really like being touched, at all. Getting things out in the open from the start has a refreshing draw to it.
i love the mom for taking her child to kennywood and not keeping him in the backyard, playing in a tiny pool or sprinkler. and so i trust her judgement. she knows her son and is doing her best. i totally respect that.
somehow i am willing to bet that even with that shirt her day had stress that i will never know...
Oh my heart hurts from this post. What must these parents and children go through on a daily basis. I have a co work with 3 autistic sons. He adors them but you can see how tired he is. I ask about his boys to see how they are doing. I do this with all the parents in the office. But it is always a special joy when one of the boys has a break through. Like being able to attend a regular class. His kids are so smart. One of the twins can spell words I can't spell from the time he was like 3 or 4. I recall one day how excited he was because his oldest child threw a ball to him. He thought he would never get to play catch with any of his sons. It makes me cherish my son that much more.
Thank you for always brining things to our attention that otherwise would go un-noticed. Your words are beautiful and heart felt as always.
If that helps that mom , that family - whether for a special-circumstances day trip or every day outtings - then good for them. It's a very personal choice and only the family in that situation can know the whys and whethers. I hope they had a fun day out and I hope that family keeps finding ways to make things work for them.
Until you've been on the receiving end of those stares and that judgement, you really don't know what you would do. I support that mom's decision, and I applaud her for doing the best she can to make that outing a success. Kudos to her for taking him to Kennywood! My 9-year-old son is very high-functioning, which is a huge blessing, but also can make things difficult when he has an "off" day because he so often seems so typical. Some folks (family included) can't see the effort he is putting forth on an almost continual basis to remain that way. I'm very very proud of him.
I wish only the half wits who stared and made that shirt necessary, would be forced to wear their own shirts. I could think of a few choice phrases for the shirts, but I'l refrain.
Okay, after going back and reading some of the comments, I don't like my previous comment. I'm having a bad day, and let that influence my perspective. I think everyone made some very good points. When my son wore a helmet, I used to get so sick of answering peoples questions about it. A shirt would have helped that, but I still don't think I would go that route. I guess the point is, that mom was doing what she felt was best, and who else would know better?
I think in general day-to-day situation the tshirt would be inappropriate, I guess for lack of a better word, because it is kind of like taking out a billboard telling the world that your kid has issues when quite frankly it is none of their damn business - people are going to judge like that tshirt or no and honestly the only person they make look bad is them selves (see my last blog post ;-)
That being said in a situation like Kennywood, where there are so many variables and sensory input and possibilities for triggers for a kid like that, it may be a good idea. It would let people know around him that if he needs help he needs special help and lend a bit of understanding if there is a situation like he got lost or disoriented or whatever. I cant imagine a day trip like that is amazing for the kid and just stressful for his mom. The tshirt could help alleviate some of her strain just because it lets people know that he does have special needs which may make her feel better.
I dont like labeling anyone, kids or adults, on a general basis, but Kennywood and places like it have to be just overwhelming, especially to a child that has no way to process or express that input, and basic understanding from random strangers may just lend the family some peace of mind and let them all enjoy the day.
I have mixed feelings about the shirt. I, for one, would have started with-I am a boy who loves Kennywood. Oh-and also I have autism.
I wouldn’t want to wear a shirt that told everyone my diagnosis, my faults, my triggers.
But I also could explain my "odd" behavior should I need to. I could vent my frustration in "an appropriate manner" that it's too hot, noisy, the line isn't moving, there's too much red, the kangaroo scares me, I'm missing my favorite show...whatever.
He can't.
I understand the Mom-who is tired of people wondering what is "wrong" with her child. Why he "acts like that". Looking at him like he's doing that on purpose to annoy everyone. Thinking she's a bad Mom. She actually is educating some people-so maybe the next time they see a boy acting up-they won't think he's a spoiled brat with out-of-control parents
Yes, he should be allowed to have fun, be normal and not draw attention to himself with his shirt-but at the same time--the shirt might be helping him HAVE that fun. People might lower their voices, not jostle him in line, not scream right next to him. They might be more helpful, understanding and courteous to his Mom-all of which helps them have a good day.
I wish the shirt wasn't necessary in this world. But I would imagine the Mom had her reasons, a lengthy history of other days without the shirt, and knowledge about what would make their day better. That's really all that matters.
I didn't read the other comments because sometimes I just have to write what I feel before reading the rest so while I may be saying some of what was already said I'm going to say it anyway.
As a mother of an autistic son I constantly an explaining that he's not being "bad, shy, rude, or insensitive" he just see's the world differently than we do and social settings are his biggest challenges. I bought a book called All Cats Have Asperger Syndrome and took it in to read to his 3rd grade class and then the class asked lots of questions about my son. He sat beaming the whole time. He was so excited at the possibility that other kids might understand him a little and be more open to trying to befriend him and not just think he's 'weird'. He also has a favorite shirt that says "Aspie's Unite" that shows children standing around the outside of a globe with their arms folded and it says "yeah right like we're going to hold hands". And he LOVES wearing it because it is "so him".
I am grateful for labels because it makes it a little easier to explain his needs to others teachers, doctors and sometimes complete strangers who try to talk to him in a store or social setting. Most of the mothers I've met at groups don't even tell their children what their diagnosis is and I don't feel that is okay either. How much would it suck to be a kid who has a form of autism and not know or understand what is going on with them. They will notice they're different some day and I want my son to be able to understand this part of his life as much as he understands that being a military child makes him different in little ways too. It's not a bad thing to have asperger syndrome if only the rest of the world would learn to be more accepting my child would live a better life.
Odds are pretty good that if he was wearing that shirt, he's what we call "a runner", aka a child that is super speedy and may run off, despite your best efforts, thus terrifying you to your very core as you search for him, scream his name knowing he won't be able to answer, and pray to every god you've ever heard mentioned. That tee shirt makes it a LOT more likely that someone who finds him will take action. When we went camping, one of the moms put a bandana on her son with DS that had his name, our campsite number and the phrase "please help me get back to my tent!" Considering he had run twice in the past two days, and shut down the entire camp, despite the fact that there were three adults watching him.. it was a necessary measure.
Good for that mom for taking her boy to Kennywood! I hope he had a blast! I went with a whole group of adults with Down Syndrome mini-golfing and it was amazing.
Both of my kids have multiple food allergies. There have been times when we are with very large groups of people and lots of food (family reunions, work picnic, etc) where I thought about making my kids wear tags that say "Don't feed me, I have food allergies". They can mostly supervise themselves in these situations now that they are 5 and 8 yrs old, but when they were babies and toddlers, I can't count the number of times that people want to hand them cookies and candy.
I can sympathize with that mom. I don't know what I would do in that situation if my kids were autistic. I do know that you can't watch over your kids all of the time, and if there's even a small possibility that they could be seriously hurt, they would certainly wear that shirt.
I am really, truly, honestly torn on this one! I actually remember thinking after Q.uinn was born and died that I wished I could find a shirt that explained why I was a complete and total mess - why I cried at the drop of a hat in the middle of the grocery store, why I wandered the aisles of Home Depot aimlessly, etc. And while I get all of C.ooper's quirks and behaviors and things that are just HIM, I am forever finding myself feeling defensive when we are in public and people think I have no control over him (which is made even worse by the fact that he looks like he is 8 when he is only 6!) I read all of the comments above and, like you, somehow agree with each and every one of them!
My shirt would say, "I am awkward in public situations and often say things I don't mean before I realize what I've done. Please don't judge me too quickly."
I wish there was no need for a shirt like that for SO many reasons. But you summed it up well here. " it's about teaching people that sometimes the unexpected is actually the expected." Yes. That.
I would think, based on the mom's other actions that you mentioned, that she's clearly concerned for his safety and this t-shirt gives her some security in a crazy situation. Maybe she had other reasons (like judgment from others) but I would bet she's past caring about morons like that and just wants to keep her boy safe.
I recently read a book and one of the things the author mentioned was that people who have "special needs" children tend to use the label to define their child...and that's SO wrong. That's just a part of who they are - like 10%. If you make it 100% of them they become lost to the label. They're KIDS - 100%. This boy is just a kid - whose mama wanted him to enjoy his day out with his family.
That right there is one of the reasons I started my series that I really need to do again "Judging without Asking"
Do you know how many times my son has acted "inappropriately" at a store that I even had to overhear a mother loudly telling the women she was with how I was a terrible mother and if that was her son that she'd leave the grocery cart and come back later.
Like others have said. People judge. It's unfortunately human nature. When you have a child that is non-verbal and can't tell people that his mom is lost and what his own name is it will make it difficult for reconnection. I'm sure the only way she could allow herself and everyone in their group to have fun and let lose was to have him wearing that shirt.
I am thankful that my son is doing well and most people don't even know there is anything different with him. I really hope that they had fun as I know we avoid going places as I want to avoid meltdowns. I need to just let it be and enjoy life.
Thanks Michele for sharing - I really appreciate it! (As corny as that may sound)
Thank you. Thank you for understanding that we just want our children to be able to have a grand day with their family in public without judgement, without whispered words or pointing or glares. Thank you for knowing that we just want acceptance, because we didn't choose "different" any more than anyone else chose "normal."
I read all the comments and it is a tough balance. My son is 8 and autistic and loves amusement parks and water slides, but his biggest issues are waiting in line. I basically stick to him like glue (or my hubby does) and try as much as possible to model good behavior and redirect him, trying to reinforce/teach good behavior and manners, or use distractions to help with the waiting process (like, doing math problems with him or singing some of his favorite songs). Luckily, my son does not melt down often and is relatively compliant, although he can wander off...and while he is verbal, he may not tell a stranger his name or be able to respond to questions. the whole running away/safety issue is the scariest for me, or making sure he doesn't pick something up off the ground and put it in his mouth that could harm him. I don't really care much what other people think...when my son melts down, I am more worried about how he is feeling and how upset or scared he is, I don't think he likes to lose control as much as we don't like dealing with a tantrum.
we do try to minimize wait times at the park by going during the week when it is less busy...when we took Aidan to a small amusement park at myrtle beach and he did get way overstimulated...too loud, too hot, too many people. Perfect example...he said he wanted to play a fishing game, but then refused to pick up a pole or pick a prize (cheap blow up toys). I had already given the guy tickets but Aidan got fixated on something else...so I just told the guy to forget it and just keep the tix...Aidan was just done. the guy looked so confused...he said more than once, "but it's a guaranteed prize!" he couldn't grasp that Aidan didn't care and neither did we. Aidan had way more fun at the beach and the pool...and it was a hell of a lot cheaper, too! Although the kid LOVES skee ball...we probably blew at least ten bucks on that!
I don't think I would put a shirt on my son like that...but I totally understand why a mom would. you do have to expose your kids to new experiences, and that kid may love rollercoasters, but hate the lines. the "label" issue is tough too. I am still not sure if Aidan knows he has autism...we don't try to hide it, but he has never said "why am I different?" or "what is autism?" maybe he knows but it doesn't make a difference to him. or maybe he thinks he is normal and everyone else is weird :)