Saturday, June 12, 2010

To Label or Not to Label - That is the Question

I really had no idea how many decisions I would be required to make as a parent. For example:

Where exactly does this thing sleep? (I faced this question immediately upon walking in the door from the hospital. Kaitlyn was asleep in her car seat. Do I leave her in it? Take her out and put her in her crib? Put her in my bed? Hold her in my arms? In the end I took a multi-faceted approach: I kept her in her carseat and put the carseat in the bassinet in my room. Then I kept my hand on the carseat so it wouldn't magically fly into the air and tumble on the floor. That way I had most of my bases covered)

Do I make my kid wear one of those scrunchy headband things that look like they're going to squish her brain right out?

Do I pick her up immediately when she cries so she learns to trust me or do I let her cry for a while so she can learn to soothe herself? (!@#$ Spock, Ferber, and Baby Magazine. Can they please coordinate their advice? Please?)

Then when my son came along:

You're going to cut off WHAT? Who first decided THAT was a good idea?

Can I put a hockey mask on him right now, because I'm pretty sure Kaitlyn is going to go straight for the eyes.

Can we pretty please pretend this isn't his first Christmas? I'll take a thousand pictures next year, I swear. (He was born December 22 and came home December 24. REALLY bad idea.)

And so on.

If only I knew that this would be just a taste of the things yet to come.

One of the most challenging questions I faced is one that I still face on a regular basis. When both of my kids were diagnosed, I didn't know who to tell what about their conditions and when I should do it. Do I tell them now, so they understand them a bit better and know better how to communicate with them? Or do I wait to see if it's necessary first, because I don't want people prejudging them?

On the one hand, there are real advantages to informing people right away:

"Don't pay any attention to my son, who is reciting a list of what he calls 'Mommy's Sewing Words.' He has autism and he'll say anything."

But then when I do tell people he has autism, they invariably look at him like he's going to spontaneously burst into a full-body tantrum. Or bore the pants off of them with minutiae about the hoverfly (did you know that hoverflies are distinguished by a spurious vein, located parallel to the fourth longitudinal wing vein?).

Yes, both of these things have happened. Numerous times. And there's a very good chance one of them will happen approximately 30 seconds after he meets someone new. But there's always a possibility that he won't do anything interesting or unusual, thus giving people an opportunity to discover how smart and adorable and funny he is without knowing the challenges he faces.

In some situations I think it's better not to say anything and let nature take its course. The decision becomes trickier, however, when I'm introducing him to new teachers or other adults who are going to be telling him what to do. In that case I think it's in their best interest to be forewarned that if they do tell him he needs to sit down and do his work, they run the risk of becoming ensnared in a 10 minute conversation that will result in the teacher having no idea why s/he asked him to sit down in the first place and why in fact they are a teacher at all. He has convinced many a person to give up teaching and become a lion tamer in the circus, which in their mind becomes a much more pleasant and less risky profession.

The situation is the same with my daughter. She faces different challenges, but I still have no idea when I should tell people what they're in for. Some of them become apparent pretty quickly (for example, she's hearing impaired but can't wear hearing aids right now because she had surgery on her ear canals, so it is very difficult for her to hear unless you are looking right at her and speaking LOUD). Some things take a bit longer to figure out.

In a perfect world, no one would care that in addition to the challenges most people face, my kids have an array of different issues to deal with. They wouldn't have to be labeled with anything other than what is immediately obvious: Girl, boy. Brilliant for who they are, beautiful for who they are. Hilarious. Children of God. The loves of my life. These are the things that are important for people to know.

We don't live in a perfect world.

We live in a world where physical beauty, charisma, and intelligence are valued above all else. I'm not going to get on my soapbox right now, because that topic deserves its very own post. Or book. But I will say that anything that is slightly outside of a very narrow view of "normal" is pushed aside and moved to the back.

My children will not be pushed to the back.

So do I tell people right away that things are different for my kids? Or let them figure it out by themselves?

Several friends and family members have told me that I shouldn't bother mentioning their challenges. Almost as if if I don't mention them at all, people won't notice them. There are a few reasons I don't follow this advice. In addition to the ones I listed above, there is another that is perhaps most important of all.

My children are amazing. They will NOT be embarassed by, ashamed of, or sad about who they are.


They are different, and that's ok. I will not hide anything about them just so people can continue their ignorance of or prejudices against people with special needs. They should not be shunted off to "special" classes so typical children and gen ed teachers don't have to deal with them. I'm not going to keep them out of dance lessons and off of soccer teams because they don't do things as well as some. They shouldn't have to sit out just because they make other people uncomfortable or unhappy.

This is a controversial topic, and many times I've heard that it's not fair to have special needs kids in a typical classroom because they detract from the overall learning of the class. But why should my child have to be isolated in a different class, separated from their typical peers? Instead, can't we have supports in the classroom to help everyone be successful? Maybe pullouts for subjects that are more challenging, but the majority of the day spent with typical peers? Why is it preferable that some be segregated? We've already proven, quite unequivocally, that separate can never be equal.

Let me add that I have several friends who have chosen to put their children in schools that deal exclusively with their child's challenges, or who are in neighborhood schools but in a self-contained unit. This can be very beneficial for some children, and as long as this is the parents' or the child's choice, it is fantastic.

Wow - didn't know I was going to go off like that until just now. Obviously I have strong feelings on the subject, and this is a topic better dealt with on its own. So for now I'm going to step back from the ledge, peel my fingernails out of my palms, and start some deep breathing exercises. Ohmmmm. Ohmmmmm.

Back to the topic at hand. Until the world stops defining success by appearance and financial standing and starts defining it by personal accomplishments and determination, I will continue educating people by letting them know that my children face challenges most people don't and they work very hard and deserve all the praise and acknowledgement that a typical child does. Labels CAN be detrimental, and ideally they would not be needed. But until we live ideally, my children will not hide who they are. They will instead celebrate their differences and teach others that * most everyone, no matter what challenges they face, are deserving of love, respect, tolerance, and equality.

It is very precarious to leave this topic as it is, and I have a lot more to say. I haven't really addressed how to educate people about special needs, or how to explain things to classroom teachers so they don't prejudge my kids and expect less from them, or told my ideas on how to make classrooms, sports teams, etc. more equitable for all, and I haven't made sure that people know I don't expect my children to be given any more than a shot at a level playing field. These topics will be addressed in many posts, so feel free to share your comments. Let the debate begin!

* There are some situations where people are not deserving of respect, tolerance, and equality, but I won't go into that here.


  1. I read your post and I give a rousing applause to you.

    There is a young girl in my nieces 4th grade class who has some physical handicaps that make it difficult for her to do most of the work in class on her own. Her parents have opted to keep her in the main stream but with the help of an aide. Because she is in the main stream class room she as lots of friends who know her and do things with her. She has invited many of them to birthday parties and over to her house to play. She can be the life of a party when the kids get past her disabilities.

    Kudos to you!!

  2. Thank you! I think that's the name of the game - helping kids to understand and accept children with special needs by making sure they are exposed to them. I'm so glad your niece is doing well!

  3. This is a great post. While I agree with most of your sentiment, I feel that being with those of the same ability is often the best choice since the world is full of the uneducated, uncaring people you point out.

    We had Nick in a "normal" recreational soccer league for the past 2 years. He had fun at practice, but he couldn't understand at the games, why he couldn't always have the ball. He would pout and slink around the field, not helping his team, until it was time for rotations. Our coaches would ask if the other team would allow him to score a goal at the end of the games, because it made him so happy. The sad part of the story is that only a few of the coaches would allow this, even though score is not kept in this league. I know, I know, I shouldn't expect preferential treatment, but, hello, recreational soccer for 5, 6 and 7 year olds is not about "winning". (Ha, sorry for the rant) Anyway, this next season, they have a special needs division! And we will be coaching!
    Good luck educating the world, you've got a gigantic job ahead of you. ;)

  4. Very good point, Nannette, and this is exactly why we are getting Kaitlyn involved in Special Olympics. I do think special needs teams are great, and can do a lot to help the kids feel accomplished and successful. Being on a team with kids who are all doing much better can be frustrating and degrading. At the same time, it's not fair for one person to hold back an entire team, so I don't think that my short, uncoordinated, ADHD daughter should be allowed to be on the high school girls' basketball team simply because she has special needs.

    What frustrates me is when people don't want my daughter to be a member of their dance team because she won't look as good as the rest of the girls do when they're performing. So what? If it's not a competition, who cares?

    Anyway, great point. Thanks!