Thursday, May 29, 2014

Tale of Inclusion: Down Syndrome and Violence at the Play Area

Yesterday I got a comment on another post from a parent who ended up on my blog. The short version is that at a public play-place her son was hurt by a child with DS and she didn't know what to do about it, because how can you blame a child with DS for anything? I offer the comment in full and then my response. 
I need advice. I have a four-year-old son who does not have Down Syndrome. Today, we went to a restaurant that had a play area. My son is big (tall and muscular) for his age, and I've always been worried about his playing in the play area there in fear that HE might hurt someone. Today at lunch he came screaming and crying out of the play area. It took five minutes to calm him down to the point to figure out that another child hurt him.
At this time, I saw a mother enter the play area and then come back out (by herself) but look at me as if I were a horrible parent because my child is screaming in the restaurant. So, after I finally calm my son down enough to find out that another child pinched him on the cheeks hard (and also I later found out from another child that the same child had first hit my son on the chin...and on the way home discovered that the child had pulled my son's legs out from under him), I decided to go find the child, explain to him (possibly not in the nicest tone of voice) that hurting my child is not acceptable, and then tracking down the child's parents (by the way...the woman who stared my child and me down for my son's screaming was the boy's mother and she knew what he did and still did nothing to stop the child) to explain to them that their child's behavior was unacceptable...it turns out the child had Down's. The one who violently hurt my son.
Of course, I couldn't take action against the child or the parents, but how do you explain to a four-year-old who only understands that he was hurt for no reason? (By the way, my son did not behave with aggression to the child. Several other children and the parents who were sitting in the play area--the only reason I was not in there physically was because there was no more room for parents--substantiated that the other child turned violent toward my son for no reason.) How is anyone (whether they "know" what they are doing or not...and this child knew that what he did to my child was wrong) allowed to do violence to another? How is it more acceptable for some?
Because I even knew it was "taboo" to blame a child with Down's for his behavior. I hate to say it, but I'm furious with the parents because they knew that their child was violent, knew that he was the one who hurt my son, didn't remove their child from the play area, didn't apologize to my son (but instead looked at me as if I were a horrible mother and my child a horrible child because my child was screaming because THEIR CHILD HURT MY CHILD).
DEAR READERS PLEASE NOTE - The person with the comment and I have exchanged emails and I anticipate she will read this blog. If you are rude in comments, I will simply delete your post without warning! It's fine to disagree thoughtfully, I'd love to hear better ways of framing a response, but no rudeness to someone genuinely looking for help. 
Dear S.

I'm really glad you wrote me and want to have this conversation. It's important. When my son was three, the idea that he could just go into a play area and be around the other kids as seemed impossible. How could he control his behavior? What if the other kids didn't understand his limitations? Most of all, what if he got stuck in one of the big climbing contraptions? Could he even physically, ever, go up those ladders and down those slides?

Now he does it all the time. I'm so proud of his physical and social development, but I'm still always worried something will go wrong. So far mostly so good, but your story reminds me of the challenges.

Here are my two key points:
First -  Having Down syndrome does NOT mean one can hurt other people without consequence. That is exactly the opposite of the message that I would hope to convey. I actually think it's extra vital that we make sure that our children understand the consequences of their actions. It's a harsh world out there for people with disabilities, and learning control is vital to inclusion. The problem is how. How do you make the connections between actions and results apparent with someone who has speech/developmental delays? There are solutions, or at least ideas, and I'll offer them below.

Second -  I was struck by how often you talked about feeling shame. Other parents were looking at you, you felt like a bad mother, but you know that you didn't do anything wrong. It's not a good feeling. Here's something to consider - That shame you were feeling, the shame that the other parents are looking at you and blaming you, parents of kids with disabilities live with that shame all the time. It can get really oppressive, making parents like us self-isolate. We just stay home, keeping our kids out of the grocery store, playground, or even school.

I've felt it, I feel it all the time when my son acts in a non-typical way, or his nose is too runny and people are judging me, when he shouts in the barber shop, when he dances randomly in the mall, I encounter so many micro-aggressions on a day-to-day basis that you'd think I'd be used to it, but no. I still feel shame.

So I'm asking you, as a parent, to think about that emotion you felt, to know that you were in the right here, but to approach those parents with compassion and empathy.

So now what? I operate under the principle of inclusion, but not same-ness. My goal is to have your son and the boy with DS included together, safely, in the play-space. That doesn't mean consequence-free violence, but it also doesn't mean that you can respond to the incident as you would for other kids, because the usual methods of parental reaction - yelling (sadly), time-outs, removal of privileges - might not have any meaning. Yeah, a parent can take away a toy or fun activity from a four-year-old with Down syndrome, but depending on their developmental level, it might not have any meaning. How do you connect the consequence to the act of hurting your son? That's the challenge here.

The first step is to understand what might have happened. What does the violent behavior - pinching, tripping, hitting - mean in this case? Does it come from anger? Aggression? Confusion? Fear? Sometimes it's from over-stimulation. Or, and this is pretty common, people with Down syndrome use physical responses as an alternate form of communication. When you don't have words, hitting or hugging communicates perfectly well from the perspective of the child, and it might not even communicate what you think it does.

People with Down syndrome are not any more likely to be violent by nature than anyone else, in fact probably less so, but they do often have boundary issues. Maybe the parents knew their child was violent, as you say, but maybe not. We - parents - are often surprised by our children's response to situations. I knew a boy who liked to grab hair and pull - it was an interesting texture and sensation for him. My son often pushes hands away, sometimes slapping, when he's angry or frustrated. One time my son Nico was so afraid of splashing water that he reached out and grabbed my face with his hand, cutting the skin with his nail, terrified. That's violent, but different than fighting from aggression or anger, or from knocking someone down because you're playing ninja and don't have good control.

The goal here is to communicate. We don't want four year olds, or fourteen year olds, hitting as a way of expressing their frustrations. On the other hand, typical interventions - yelling, time outs, taking away privileges - might not have a lot of meaning for the child with Down syndrome. When my daughter misbehaves, we talk about it, we make sure to verbalize a clear cause-effect relationship. When my son, who has DS, misbehaves, we have to be more creative.

There are intervention strategies for kids with Down syndrome who are "challenging." You focus on skills. You focus on communication. You find positive reinforcement rather than punishment (which works better for all kids). 

One technique we've used with Nico is the social story. They are picture and word-based behavioral stories that try to make sure a person understands a situation and the consequences of actions, to help them make better decisions in the future. They use a lot of positive affirmation and perhaps one or two pieces of instructional advice to try and achieve better response to situations.  Therapists make them for their patients, though parents can make them as well. Here, for example, is a story about playing nicely with a brother, easily adapted for a public playground. Here's another. Social stories have worked wonders for my son, but each kid is different.

So what might you do if you see the parents again, or if something like this happens again?

Comfort your son and comfort yourself! I'm sorry that people looked at you as if you were a horrible parent, but don't let them get you down! People judge all the time and are usually clueless about context; ultimately, the opinions of strangers aren't that important (to me anyway). Remember that no outsider ever has a clue about what's going on in a family and try to just do what's right.

Engage the parents. Tell them what happened. I would be devastated to know my son hurt another child, and so might they. Remember that raising a child with special needs is pretty difficult, so once you have calmed yourself and your child, engage with empathy

If you see these parents again, I can't tell you they'll be happy to hear from you, but I think you have the right to talk to them because your son was hurt. Moreover, I think building an inclusive society requires someone to make the first conversational move, to reach out, and I'm hoping you are the one to do it.

I would say something like, "I know you've got a lot of challenges, but I felt it was important to tell you that that your child hurt my child today in the play area. Is there a way we can talk to him about more appropriate play? Is there anything that I or my son can do to help?"

In the end, I'm really sorry that your son got hurt.

I hope, though, that this is a moment that can lead towards a more inclusive society, not away from it. Inclusion, not same-ness. We don't respond to this boy hurting your son the same way that we might from another child. Same-ness just won't accomplish anything. But we DO respond. We must respond, and respond with dialogue, patience, creativity, and empathy.

12 comments:

Rachel Douglas said...

First stop the shame! Embrace the love of your life.Your child. Why should someone assume a child doesn't understand based on Ds? I appreciate the mom reaching out to ask how to handle this but honestly in the bigger picture why should she be considering this situation to be any different than any other situation on a playground? Four year olds biting, kicking, pushing, pinching etc is nothing new or unique to Ds. When one kid hurts another, we immediately comfort the kid who is hurt, ignoring the other kid who did the hurting. The mother of the boy who did the hurtful action should step into the situation and deal with her child. If not then this is who you blame, not the four year old. When the mom explains to her son why this happened you explain just like any other time this happens. "Sometimes kids are aggressive and sometimes we get hurt. Maybe he was having a bad day, maybe his mommy wasn't there to stop this from happening. I wasn't there either but I am glad you are ok."
If we are judging this particular situation, the mom of the kid who got hurt wasn't in the space with her own child. For her to go back and track down someone is a little too late. Let it go. The other parents who were there should have stepped in and comforted the hurt child. Called their own children to stop and check on the hurt child. Model compassion for someone who is hurting. Teach you child to be the one to go and check when a child gets hurt.
We can't expect to discipline any child other than our own in a public playground, but we can offer compassion. We can remove or navigate our own child around more aggressive kids. But shame and blaming a kid is the wrong approach.
Dealing with your own child with Ds is separate issue. I don't expect or appreciate a stranger to discipline my four year old. But if you want to offer advice to a parent on how to handle their own child who might be aggressive, I say deal with it consistently and seriously. Find out more, embrace your child. Yep, you might be hanging out longer in the playground.You might benefit from exploring why your child needs more input and figuring out ways to give it to him and include all the kids. Wheelbarrow races come to mind if a kid pinches. Embrace it! Become the coolest parent there. Play. And if someone gets hurt, give them attention, they are hurt. Work with your own child, without blaming them, at home and until they are ready to go at it alone, put on your play clothes! Bottom line, stop the shame and blame game.

walkersvillemom said...

I appreciate you sharing this story, and the discussion that will (no doubt) come from it. It’s a troubling, but not unfamiliar story. I can’t tell you how many times I’ve heard someone say (or read in comments on posts) that parents of children with Down syndrome let their kid get away with everything. Since I can’t say that I’ve ever met a parent who doesn’t discipline their child with Down syndrome in some way, I have to assume that this is a false stereotype, perhaps born out of projection. (Parents who do not have experience with a child who has special needs may think that pity plays in to our parenting when in fact it does not.) I agree with your thoughts on needing a somewhat different discipline technique. Typical methods, especially raised voices, never worked with my son (who is 27 now) and they still don’t. Each child is different and what works as far as discipline is one of those things that varies from child to child. I do think the important part of this story is that it is perfectly acceptable to approach another parent when something like this happens, regardless of the whether the child has Down syndrome or not. I believe the key is to do it in a way that follows the Golden Rule. If parents can take the time to speak to each other respectfully, as they would want someone to speak to them, two things can be accomplished: hopefully an acceptable outcome of the specific situation can be reached, but also it can model problem solving skills for the children involved.

Also - love the social story example!

Extranjera said...

My take on this story is completely different from yours. To me, this is one more in a long line of examples of situations in which a diagnosis completely unnecessarily enters the picture. This is the side of the story of a person for whom Ds was a factor in her understanding of the interaction, a deciding factor, an overriding component. We know why this happens today and have segregation and to some extent specific kinds of awareness to "thank" for it, but the truth remains that for many of us, Ds truly does not enter the situation unless someone, usually an outsider, specifically draws attention to it. The above scenario seems to me a awfully common one. I can even give you specific examples of similar discussions amongst parents, but frighteningly, ones that involve an aggressor who doesn't speak English, or is of a different race or social class. I really wish the connection wasn't as easy for me to make between these sideline conversations and ones in which an intellectual disability is added in, but it is, and that tells me a lot. Especially about how I'd personally respond.

I understand your wish to advocate "for inclusion, not same-ness", but I'm troubled by the extent that I perceive there to actually be same-ness in your response. The assumption of same-ness of behaviors in the Ds population, the same-ness of the parental experience. If anyone came to me on the playground after my kid had misbehaved and started by saying "I know you've got a lot of challenges…" alluding to my kid's disability, I'd probably verbally rip them a new one about assumptions. I think sometimes compassion (as in not empathy) makes us forget about respect and dignity. Perhaps compassion is the foot in the door, but it lends itself all too well to a hierarchy that might even be conducive to inclusion, but at what cost, as a charitable object?

David Perry said...

Interesting take. Yeah, I dunno. I'm not sure how I'd respond if someone came up to tell me Nico hit their child. I'd want them to tell me though.

Extranjera said...

Oh I'd want to be informed as well, but just in a regular parent to parent "Hey, what up? Your kid's hitting my kid for no reason" way.

The above scenario reminds me of a post i read while back written by a guest blogger, a typically developing kid's mother, on a Ds-mom's blog. This woman's kid had blurted out at a play date that she didn't like another kid, a kid who had Ds. This parent automatically then assumed that her and the other child's mom were both thinking of the "elephant in the room", the Ds. We weren't given the other mom's point of view on the situation. Personally, I'm not at all sure I'd be thinking that, especially at 4 yrs of age, OMG, it's because of her Ds. That wouldn't probably even enter my mind as a possibility.

I think the same could very well apply to this story, and i find it very concerning to too easily accept Ds as part of the above equation.

Jojo 🌴 said...

I've gotta say that as a mom of a 5 yr old boy with Ds, I'm very concerned about his behavior & interactions in public. And that's why I'm the mom on the playground following close behind my son when kids are around, and on the sidelines @ the Chic fil-A play space. I even get "big sister" involved when they play in spaces I can't join in on. My son is mostly non-verbal at this point & he communicates with his hands....mostly sign, but slapping & grabbing occurs as well. The amount of observing I do with him has shown me his aggression has never been with malicious intent but rather him trying to express himself. However, when he is aggressive I immediately address it, with the other child (or adult) present so my son gets told actions & consequences right away, & the one impacted sees that the behavior won't be accepted - but it's addressed in a way my child understands. I also use that moment to educate the hurt child & other adult on what appeared to be going on with my son (him trying to communicate something - although inappropriately) & how they can be aware when interacting with him.

It is MY responsibility to make sure I set my son up for success so he can be included in activities. But boy, is it stressful! I agree with the different comments made....Kids at this age don't look at each other with labels. They're only thought is, "Dude, you hurt me!" I don't want Ds to define my son & any kid who behaves aggressively needs to be corrected, but I do agree that the reality is he understands things differently right now so I can't approach this as I would with a typical child. Maybe one day. No. Scratch that. Not "maybe" one day. I WILL be able to approach his correction differently one day. But until then, I will watch him like a hawk & take advantage of teachable moments.

David Perry said...

tanks for commenting Rachel!

David Perry said...

Yeah, I'm interested in the false stereotype. That's why I chose to write it up.

David Perry said...

I'm a hovering parent too.

fullhappybabyandmommy said...

I'm still working through your supportive words. I have recently had several opportunities to use the social story you recommended (because, as I mentioned previously, my little one is four years old and still testing his boundaries and learning his way). On our next big social outing, I held my breath through most of it, not concerned about running into the same boy or the same parents again, but concerned about how my son would interact with other children his age post-play place incident. He was all smiles through all of it, as if the other day had never happened. I wanted to reflect a bit more before I replied to the post. I keep thinking that the noise level and activity probably had more causation to what happened (as you had suggested) than any interaction (positive or negative) between my son and this little boy. I noticed that one commenter mentioned Chick-Fil-A. Not only was it a Chick-Fil-A, but it was our very busy Chick-Fil-A, at lunchtime. And the precise location where the interaction occurred was in one of the corners of the playground equipment. So, a very noisy, bright location with many (many) other kids running around hollering (including my son) is the environment that led to this interaction. Again, your perspective and much-needed advice helped in so many ways. Thank you.

P said...

Yeah I'm not sure you see the offensive nature of suggesting starting with "I know you have a lot of challenges" that the other commenter made. It's not that he doesn't want to know us son reacted but you can't assume the family is bogged down in challenges!!

That's an awful suggestion.

P said...

Thanks for being brave enough to ask, post and reply. Ignoring the condition is tough but brinning it up in conversation (blog post on disabilities or connection you may have now to disability) is not ruled out if you have it naturally join in the conversation. I've had lots of parents discuss behaviors & challenges & medical issues in general more freely than they likely do with most strangers!