Labels. Should they stick?

Bear with me, because I feel like I am going to be a little scattered when writing this.  Could be the head cold or could be that this topic has been swirling in my head for a while now.

Evan is almost three. Gulp.

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Where has time gone?

When he turns three, he loses early intervention therapies (and beloved therapists) and then becomes a part of the school system in our town.  As a part of the transition process, we have several meetings with the child study team where we discuss Evan, schedule new evaluations to be done, look at results, discuss how he has been doing. and make an educational plan.  The experience of being a special education teacher with my Learning Disabilities Teacher Consultant certification who now has a child with special needs is a whole different blog entry. Phew, it sure is.

But the one thing that popped up of course is that Evan has Williams Syndrome and the school district professionals had never heard of it, nor had serviced a  child with it before. I was thrilled when the school psychologist brought along his intern to our first transition meeting and you could tell she had read up on WS. She asked a lot of informed questions and shared some things she had read.  Then a few weeks ago I received an email from the school psychologist saying that they had already done a little presentation on WS for some of the teachers at the school and he hoped to educate most of the staff on WS before Evan starts school.

Great! Wow! They are really proactive, they want to learn and be prepared!

Well, that is how I felt at first and that is how I still “sort of” feel. (and believe me, I am nothing but happy with the process so far, they have been great) But I’m finding myself a little perplexed lately.  I wear my WS awareness bracelet. I am THRILLED that the drama club in my school district has chosen the Williams Syndrome Association as their community service project.  I will easily and happily discuss Williams Syndrome with any person who wants to learn.

But what about Evan?

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about 32 months

Evan is so much more than the term Williams Syndrome. So much more than 25-28 deleted genes out of over 20K. So much more than the starry blue eyes, low muscle tone, heart issues, hypercalcemia, lack of stranger anxiety, the constant song in his heart- that can all be attributed to WS, or not?

He is so much more than that, but….he also is who he is partly because he has WS. It is part of what makes Evan the unique individual he is.

Do you see why I said bear with me?  This is tricky.  Tricky because now he has a label. He has a label and he isn’t even three years old.  Teachers can look up WS on the internet the month before getting Evan in class, and assume that he will be overly anxious, overly friendly, and bad at math. Will they see Evan for Evan? Or will they see WS first?

I teach second grade. And I HEART my students. Big time.  I am helping to promote a local event that will support the WSA.  There is a ten minute clip that pulls excerpts from the movie Embraceable, that I find to be the most amazing way to learn about Williams Syndrome. You can find the clip HERE if you click on the Vimeo video.  The teacher I work with asked if I would consider showing it to my class to spread more awareness with them.  I was surprised at how I felt when I considered it. I faltered. I felt anxious, unsure. Would the kids understand? They LOVE Evan. When I bring him into school they follow him around like he is a celebrity.  The children in my class are all approximately seven years old. Would this make sense to them? Would they still see Evan as Evan or would this new label be what sticks? Does that matter? I don’t know….

I watch the video clip and I cry. Every time. Not because I am sad. More because it makes sense to me now. Because I see my son in those clips.  I see little bits of his possible future. I see myself in the faces of the mothers who are gazing at their child’s colossal smile. And I do not feel at all ashamed or badly.  But there is still a part of me that wonders by me pushing the label of WS out there, so boldly, so fervently- what could that mean for Evan?

I want him to have opportunities. I want him to be loved, liked, played with, looked up to, laughed with. The same things most parents want for their child. Do I want him to be the poster child for WS? I don’t know. By blogging and putting our story out there, it certainly seems I do.

This is one of those entries where I would just love to hear your thoughts on this.  I have heard from other parents who have chosen to not share the diagnosis with certain people in their lives because of different reasons.

Should we give others the benefit of the doubt and hope that they see our children as whole individuals, and not just a diagnosis?

Labels? Should they stick? What do you think?

20 Comments on Labels. Should they stick?

  1. Jen Long
    February 13, 2014 at 11:56 pm (3 years ago)

    I’m thinking of students I’ve taught with “labels” and how , even though I keep aware of them to better meet their needs, the labels also tend to disappear and I just love them who they are and the joy they bring to me daily . While WS contributes to what makes Evan unique and special, I know his teachers and everyone he meets will just adore him for who he is and everything about him!
    One of my favorite professors at St. Joe’s told us always put the child before the diagnosis. Even is a boy with Williams Syndrome. It’s a part of him but not all of him. You, Todd and Evan will be in my prayers while you go through this transition. You’re a great mama and friend. Love you

    Reply
  2. Ashley Dunaway
    February 14, 2014 at 12:22 am (3 years ago)

    I love your posts. I cry every time I watch those video’s too. ( and every time I read your sweet blog) Sometimes it is because it makes me sad but in the end I cry because I am seeing a small snap shot of my son at an older age and it give me persecutive. Plus, it’s kind of a trip looking at Coopers identical twin. I think a lot about labels and what it means to Cooper and our family. How we are labeled in our school district as the only child who has ever been through the program with this diagnosis. It used to make me nervous but now I wear it as a badge of honor. This “label” has made us an advocate for not only our family but the WS families that will follow.

    Reply
  3. emily angehr
    February 14, 2014 at 1:26 am (3 years ago)

    Hey Erin –
    Love your posts, this one included. I just wanted to share the perspective of having typical kids who are in integrated classrooms. It helps a lot for them to know that there are special needs kids and that they have struggles specific to a disorder, and that they are not just “weird.” There’s a parallel to what educators now know about racism too. It’s better to teach explicitly about difference rather than just let kids be “color-blind” – because many “color-blind” kids end up absorbing racist perspectives. In the same way, before “labels” like austism or aspbergers, kids were just informally labeled “weird” or “oddball.” Now, there may be kids who still view kids on the spectrum with those labels, but a good educator works hard to help typical kids *try* to see from an atypical kid’s perspective. So the boys had an autistic friend in TX, and we talked a lot explicitly about how this friend had a hard time understanding physical boundaries – so that when he talked too much or right in our faces, it was OK, we still needed to love him even though he was different and some of the things he did bothered us. Here in NJ, we talk about kids who are in their classes who are special needs, and we talk about ways we can encourage them and support them even when they aren’t acting like everyone else. We use our special needs cousin as a reference – someone we love, but who has many limitations. I think they’re getting it and are sensitive to helping in a way that they wouldn’t be otherwise – because human nature is unfortunately bent towards exclusion unless we actively fight against it.
    I also feel like you’re giving your teachers a huge step in understanding the baseline of how to support Evan. If they don’t have the label, they’d be trying to reinvent the wheel, and probably trying tactics that won’t work, or missing out on easy tactics that will.

    All of this and I don’t mean to begrudge you of any of the questions you’re asking or what you are feeling about the label. I just wanted to give you perspective on the positive things that can happen when other people are able to access information that will help them understand!

    Reply
  4. Erin
    February 14, 2014 at 2:14 pm (3 years ago)

    Ladies, thank you for your comments. I love reading them. Jen, your professor was a wise one. I’m all about person first language for that very reason. I love you friend. Ashley, my son’s twin’s mama- you reminded me of a very important reason that I started blogging-to help those who are receiving the dx and.who need to have some hope. Thank you dear. And Emily, leave it to you, one of the wisest women in my life, to share a very needed perspective that I definitely do not have, being in my position. I think you are very smart to proactively teach your children tolerance. We hope it will be inherent and come naturally but without some explanation, it might not. I appreciate you also recognizing that these feelings and questions I still have are real. You would make an excellent therapist. 🙂

    Reply
  5. Melissa
    February 14, 2014 at 6:39 pm (3 years ago)

    Erin, I have already come back to this blog post several times to re-read…as you know I struggle with this all the time, every day; I’m still figuring it out. Here’s what I know – I don’t want R to feel shame, ever, about her dx, and I think secrets = shame. I think the doctor who told us that her dx should just become part of the fabric of her life was probably right. And, like another commenter above, I think her teachers and therapists need to know about her dx in order to teach her effectively. But I ALSO know that it’s hard to get that diagnosis out of your head, and there is plenty of data that show that how a teacher perceives a child affects how that child performs (I am thinking of all the psychological research that has been done with teachers where a teacher is told they have a “gifted” class vs. a teacher who is told they have a class with delays). I have already felt that R is under the microscope too much, and that behaviors that are typical 3 year old behaviors (saying “no” for instance) are being flagged by well-meaning but perhaps misguided teachers. And I also know that Andrew Sullivan’s discussion of “disability masochists” (his term) – families where the child’s disability sort of swallows up the entire family life – is not what I think is best for my family (and my family only). I struggle even as we are planning this walk whether to post about it on facebook, or invite her preschool community – is that what I want R known for, or do I want her known for being a friendly, spunky, funny, adorable student there? I’m not sure the right answer. Thanks for writing, Thanks for still reading this too, if you still are. It’s so helpful and powerful to know that other mamas I respect and relate to are going through the same things.

    Reply
    • Erin Putman
      February 15, 2014 at 3:00 am (3 years ago)

      Melissa, thank you so much for your heartfelt comments and thoughts. I know this is something you also struggle with and I appreciate your response. I totally hear your pull between whether to embrace the diagnosis and who R is, but also trying to let her be who she is and allowing others to know her without a preconceived notion. All of these comments really help me to think further on this.

      Reply
  6. Kristi Campbell
    February 15, 2014 at 12:16 am (3 years ago)

    Wow, Erin. This is a really great topic. I’ve struggled with this too, and once posted about whether I’d “fix” my son or fix the world. It’s hard. While I do not want people to dismiss Tucker (or assume they know him) when they hear about his delays, I also feel that the more that people realize that each person is an individual regardless of his diagnosis, the more empathy and acceptance will spread.
    Evan is so much more than WS, but part of what he is IS WS, which makes it confusing and almost a “which came first, the chicken or the egg?” thing. Sometimes I wonder how much of our kids’ personalities are because of versus in spite of or totally unrelated to their diagnosis’s. Does that make sense? Gah.
    I had a REALLY hard time with this with Tucker (and sometimes still do because people hear Autism Spectrum and some still think of Rain Man and them all being the same or something which they’re not). In the end, although I hate labels and it would break my heart to hear anybody describing our sons as “Oh right – he’s the ____ one,” I do think that kids today are more accepting and aware than we were when I was a kid. In fact, I can’t really think of ever having classes with kids with Downs, autism, WS, or anything else really for that matter (maybe ADD).
    I like to believe that any teachers, therapists, family, friends, general public who identify our kids as “the one with ____” quickly get over that once they get to know them. Because they DO have their own unique personalities. Whether they’re because of, or not, ya know?
    I love that you wrote this. I think it’s a really important topic and deserves tons and tons of input and discussion. Also, congratulations to Evan graduating Early Intervention!! (I cried when Tucker did). His new school does sound wonderful (and how awesome that you can bring him to teach with you sometimes??? AWESOME).

    Reply
    • Erin Putman
      February 15, 2014 at 3:12 am (3 years ago)

      Kristi! I just adore your comments. I often read your blogs and spend an hour reading your responses to your comments. So much experience, insight, and perspective to be gained. The chicken and the egg conundrum is so key to all of this. Diagnosis can make up so much of who someone is, but also it is not ALL of who someone is. I do want to give Evan’s teachers, friends, loved ones the benefit of the doubt and hope that they see him first, and that his diagnosis only helps shed light on some things that might be a bit murky. I definitely need to go back and read your post about “fixing” your son or the world. I also wrote a post a while back about how I would not change Evan’s WS. I think I know deep down that I am meant to share about him. That I am destined to share, unabashedly, who Evan is, and that includes his WS. But I love hearing all this discussion. Thank you for sharing with your awesome community.

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      • Kristi Campbell
        October 17, 2014 at 11:25 pm (3 years ago)

        Hey Erin.
        I’m back here tonight after you referenced this post in your comment over at my place and have to say first, that I instantly knew which post you were referring to although I’d forgotten about it when I wrote in such a hurry last night. I think that, in my heart, I know that I am supposed to share about Tucker, and that you are supposed to share about Evan, because this is what writers do, and sharing really really helps us to process, and the sharing of it really really helps other people. I know that this is important. But, again, like you say, I want people to meet our children and meet THEM…
        Sigh.
        I had a new experience on the kindergarten bus today that makes me have an even newer perspective on it all… or not… I’m not sure. Anyway, I so hear you on not giving Evan’s teachers an idea of who he is before they meet him because without special needs, they don’t have that – they learn about each kid as they learn about each kid and that’s how it’s supposed to be but at the same time, maybe our kids don’t teach them as much about themselves as quickly as other kids do and maybe there is “stuff” there that they should learn and know about??? UGH. Such a hard thing. I think we need to continue the dialog though…

        Reply
  7. Kate Thomas-Arter
    February 15, 2014 at 12:53 am (3 years ago)

    I love that you share and educate. As a teen, I saw a counselor for diabetes, and she wouldn’t let people say “diabetic.” It had to be “person with diabetes.” Being labeled a diabetic never bothered me, but what has bothered me is people’s misconceptions surrounding the label. I’ve always been very open about it, so I can educate others. It’s obviously not the same situation that you and Evan are in, but I fully support your drive to educate others and share your story. We both know that, as teachers, we were often told what to expect, and that never stopped us from seeing the students we had through our own eyes.

    Reply
    • Erin Putman
      February 15, 2014 at 3:17 am (3 years ago)

      Your counselor was ahead of her time. Seriously. I like that philosophy. Thank you for supporting my push to share and spread awareness. And you are totally right about how we have always seen our students- as children first, before we even delved into the background or testing information. I was always so glad when my students with special needs were placed in your classroom so we could work together. You always gave them the same treatment you did the rest of the class. I do miss you in our school. Big time.

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  8. Jennifer Steck
    February 15, 2014 at 12:53 am (3 years ago)

    I have no answers for you, Erin, since I have no experience in this area. I’m confident that you will make the best decision for your son and your family, with input from all these special visitors.

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    • Erin Putman
      February 15, 2014 at 3:19 am (3 years ago)

      Thank you Jennifer. I truly appreciate you taking the time to read and comment. The input has been so incredible.

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  9. Dana
    February 15, 2014 at 12:57 am (3 years ago)

    Erin, Kristi posted a link to your post, and I remember reading your Our Land piece months ago. I will give you my perspective as the mother of a child who does not have special needs. My 12 year old son has been friends with a child who has autism since they were both five years old. My son and all the other kids have always known that Ryan has autism. But instead of focusing on it, they just accept it as part of who he is and then put it aside to concentrate on just being kids. I know your questions about labels involve adults, but I think children use those labels to understand differences. Once they are understood, then they are no longer a big deal. That’s been my experience, and it may not be the norm, but it should be.
    I’m sure this will be an issue you continue to wrestle with as Evan gets older. I hope Evan’s transition to the school system goes smoothly, and that you continue this important discussion on your blog.

    Reply
    • Erin Putman
      February 15, 2014 at 3:21 am (3 years ago)

      Hi Dana! Thank you for your comment! I really love hearing the perspective of mothers who have children without special needs who befriend those who do. I think you are right that children need a little more black and white sometimes, and they can see past it a lot easier than adults can. The information can be just that- information- that sheds some light and then they can move past it and just know their friend for who they are. I really hope that happens for Evan. Thanks again.

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  10. Kim
    February 15, 2014 at 2:06 am (3 years ago)

    My twin…one thing is for sure:no matter what you decide, the light of Evan’s soul will shine in whatever new environment he encounters. He has such a powerful spirit! For those people that don’t have experience with WS, an awareness would help give then some context…something to hang onto when interacting with Evan. For kids (who can be cruel when they don’t understand and just see “different”), it could probably do a world of good. But you’re right, some people are just going to see the label -and not know what to do with that, or worse, not attempt to get to know Evan for Evan. But I’ll tell ya what…I’ve been given/assigned plenty of labels in my day. Plenty of those I did not choose and plenty weren’t even based in the fact or truth of who I am. So from that perspective, there is power and freedom in getting to present who Evan is in a way that is authentic. There is power when you, as Evan’s mother, get to determine how WS is presented…and later on when Evan decides how he himself wants to be presented. And knowing the kind of kick ass mom and advocate you are for your son, I just know you will ensure Evan gets challenged appropriately in his educational environment.

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    • Erin Putman
      February 15, 2014 at 3:23 am (3 years ago)

      Twin, you are so kind to speak of Evan’s spirit. Of course I feel he has a powerful spirit but I love reading that you feel it too. I do like the idea that I have power in presenting Evan and WS in a way that I feel is authentic and necessary. Right now I have “some” control over what information is being shared and what is being highlighted, etc. Thank you for bringing that to light, it helps me to feel better about the pride I have had in sharing Evan’s story without him having a say. 🙂

      Reply
  11. Linda Atwell - Out One Ear
    February 15, 2014 at 5:36 pm (3 years ago)

    I totally understand where you are coming from. My perspective? I wrote about it a couple years ago and am adding the link, but the gist of my experience is that we didn’t have a diagnosis or a label for a very long time and didn’t know how to help my girl. People did think she was odd, immature, strange. I think those labels hurt worse than the real one we eventually got. But when we did one, the label was vague. Anyway, I think typical kids are labeled too–athlete, all-star student. Sometimes they stay that way. Sometimes it’s too much pressure. (Our typical son tried to be perfect since his sister was so much work–that was an extreme amount of pressure for him). Sometimes they find out they aren’t quite the label their coaches, parents, teachers gave them. I think I’m all over the place on this issue too. If you want, you can read my full explanation here. http://outoneear.com/labeling-the-mentally-challenged/
    I loved your post. You are wise. Very, very wise. Please know that most of us struggle with this too. P.S. Your son is adorable. 🙂

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  12. Joe Lattanzi
    February 16, 2014 at 11:00 pm (3 years ago)

    Wow. Another thought-provoking, sincere, compelling, and eloquent entry. What I appreciate most about your posts, Erin, is that though the subject matter is specific, the take-aways are often universal. Instinctively, I can’t help but think that labels are something we all instinctively employ to help our identifying those around us as well as ourselves. What may differ is how we allow those labels to affect our behavior. And though we can’t control how others behave, we can (at least to some degree) control how we allow ourselves to be affected by the behavior of others; no easy task, but still a possibility worth the effort. I imagine the sooner that Evan (and those of us that love him) can come to peace with this reality (again, no easy task) the sooner the label that sets Evan apart may also become the label that provides him (as well as those of us who care about him) with a sense of empowerment.

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  13. Todd
    February 17, 2014 at 4:39 pm (3 years ago)

    A lot of great responses for this post. I love that Erin (and Evan and I) have such loving, thoughtful (in the cerebral sense) and compassionate friends.

    You all have me thinking…to know a label isn’t the problem-it’s how we use that knowledge in our lives that makes the difference between polar opposites like true selfless love and absolute hate (and, for most of, all of the points in between). If we use that knowledge to better measure our responses in a loving way we move towards love. I really like the superstar parenting Emily employs with her kids to help explain why a friend responds differently than other kids–but it is for a specific reason and doesn’t make him a weirdo or a monster. I’m stating the obvious, but want Evan to have friends like that!

    The problem isn’t the label, it’s whether we embrace the person who has it or leverage the label to our own ill-intended gain. Disabled, Muslim, Christian, Addict, Liberal, Conservative, Gay, Straight, Stylish, Redneck, etc. If we approach the individuals to whom any label applies (or might apply) with a sense of hunger for understanding and love despite ourselves, we can make the world better. I feel like I do a good job with this idea when I’m aware and intentional about it, but my prayer for myself is that I am better able to do this when I’m not aware that I’m exploiting others for my own selfish benefit.

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