Tuesday, December 2, 2014

Help for one of those tricky special needs situations

One ongoing conversation I've had with Sabrina over the years: How to handle it when she hears other kids talking about Max. I'll never forget that incident, at a kids' night out at Sabrina's gymnastics school, when Sabrina told me afterward that other kids called Max a "droolie." Back then, as I do now, I suggested that she could tell other children who make fun of Max what a great kid he is.

Sabrina seems to be navigating things OK, though I've long wondered whether I've been steering her well. She recently started participated in a workshop for siblings of kids with special needs. Yesterday I had a conversation with the instructor, Jodi—who's a clinical social worker—about how to handle these interactions, and I got some eye-opening insights. Some key info she shared:

When your kid tells you that another child (or several kids) said stuff about a sibling with special needs...

The first thing to do is ask, "So, how do you feel about what they said?" Sometimes, kids have a hard time talking about those feelings with their parents, Jodi said, because they might feel they're already under stress. Asking an open-ended question like this encourages conversation.

After your child expresses how she felt about what was said...

The best tactic is to validate her feelings. (A generally excellent parenting practice.) "The only thing anyone wants in life is to be heard and validated," Jodi noted. So whether a child says she is embarrassed, mad or sad by what a peer said, you can answer with something like, "That makes sense, I'd feel mad or upset too" or "I totally understand why you got embarrassed." The more you validate feelings, the more a child will be open to sharing them. This also helps build self-esteem because she'll feel comfortable with her reactions.

And if your child wants to know how to respond to other kids...

Turn the question back to her and ask what she thinks would be good to say, without imposing your own ideas. "Her response needs to be meaningful to her. Or it could be that she doesn't want to say anything and that's fine," Jodi told me. "Or maybe she only wants to tell the other kids, 'Yeah, whatever.' Again, that's also fine because it's what she's comfortable with. This is about her, not about Max."

Ah. Yes. So true. As Jodi noted, "Sabrina's goal at this point in her life is to not be different from other kids. One of your goals is to help people appreciate Max for who he is, differences and all. And those are two different goals." Of course, I hope that as the years pass Sabrina will grow to be a champion for Max in whatever way she's comfortable. I hope, too, that he can champion more for himself. Assuming, that is, they both survive the sibling rivalry.

For now, it seems best to encourage Sabrina to handle situations with peers in her own way and not urge her to stick up for him. I'll keep right on explaining Max to her as best I can and hope my words come in handy, should she choose to use them. I've always told Sabrina that Max talks in his own way; recently, when a girl wondered if Max was speaking gibberish, Sabrina responded that he "talks like Max." 

Sabrina is still developing. Max is still developing. This mom is still developing. We are one happy, occasionally stumped, ever-evolving family.

Image: Flickr/Samantha


  1. My relationship with my twin sister, "special needs wise" is rather complex because I can explain myself,, so she stays out of it and honestly does not view me as having a disability, Im Kathryn. However if I was being made fun of she would totally tell people to stop(and has). She also has medical issues and I have always supported and stood up for her as well, as she explains herself. All it boils down to is love.

  2. My sister gets really angry when people are blatantly rude to me it's her way of showing how much she cares and I appreciate it more than she'll ever know.

  3. My brother was 14 when I was born. That meant that he was always old enough to have the capacity to understand disabilities. It also meant that we only had a few years "together" before he basically left the family and went out on his own. He has always been a "champion" for me. What worries me sometimes is that it took me a very long time to even think about whether I was being a "champion" for him. Max and Sabrina are both too young now to be fully sticking up for each other, disabilities or no. But I wonder if that's another thing to encourage in Max as he grows up ... that he can root for his sister as well as vice versa.

  4. I don't know what's right or wrong for your family and believe strongly that all children are individuals. But, in our family we don't support the "goal at this point . . . to not be different from other kids" when that goal conflicts with another important value (my daughter's essay theme this week is actually on that topic).

    For many this isn't a reachable goal. The choice by those who do have a choice, to stand tall, when they're taller than everyone else, to keep the curls, when everyone else is straightening their hair, to wear purple Converse shoes when everyone else is wearing white is a small step to diversifying a community, creating a community where those with differences can fit in. None of those are important choices, but standing up for someone else is.

    We expect our kids to stick up for each other, and for anyone who is being excluded are harassed. As I said, of course, these rules depend on the individual (our kids are willing to stick out and stand out) and they are growing into adults. But, in our family, supporting their needs doesn't give them a bye on standing up for what is right. Standing up shouldn't mean subjugating ones own needs an goals (the goal of advocating for someone else, even your brother or sister or child shouldn't subsume all your own goals), but we talk openly about the value of the goal of "fitting in" when it means not supporting the values of our family.


  5. I hope you don't mind that I shared this on Facebook! I think it is a huge insight piece for parents of typical kiddos. Plus, one of my daughters just gracefully handled her first situation where a kiddo ALMOST made fun of our special needs son. Hugs and much love!!!

  6. I have to disagree with bj. Kids especially girls around Sabrina's age want to fit in. It's perfectly normal to an extent. I know I lived it not too many years ago. I have only one hope for Sabrina, that she is able to navigate the choppy waters fitting in as much as she wants without comprising herself while supporting and loving Fireman Max. I would love for Sabrina to be able to meet your goal. She will someday but she may not be able to now and that's okay. Her love to her brother isn't anything less. This last part is a note to Sabrina: Sabrina, Over the next few years you will see many people, even some of your friends desert who they are and what they believe in just to fit in. You can fit in as much as you want just don't abandon who you are as Sabrina Seidman to do so. Find friends who accept you as you and hold them tight. This is advice from a teenage girl to a future teenage girl, you.

  7. I think it is true that we want kids to be able to stick up for their siblings, especially if the siblings are younger and/or have special needs. But it is also true that a kid can't be expected to take on the job of being their sibling's advocate all the time! That is a grown-up's job. Kids need to form their own identities and find their own place in the world, and while being the sibling of someone with special needs is PART of that identity, she is still a whole separate person from her brother. So I would agree, encourage her to talk about it and to come up with her own way of handling it... while still emphasizing that it is not okay to make fun of or hurt others, in general, whether or not the person is your sibling!

  8. I speak to sixth graders. With their varying degrees of knowledge about ASDs and disability/special needs in general, I get a diverse audience with varying queries. I'm not the fit-in type and I never will be. I'm always looking for ways to stand out. Normal is mundane and bland while diverse and different are flavorful, colorful, and anything but ordinary. I say to not bother with all this conformist junk. It's just another society-imposed unnecessary burden. This is from an autistic teen still trying to figure it out.


Thanks for sharing!

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