March 21, 2011

Facebook and "Special Education Week"

If you're on Facebook, chances are you've seen variations of this over the last year or two:

"People need to understand that children with special needs don't have an illness, they are not looking for a cure, only acceptance. 93% of you probably won't copy and paste this! Will you be in the 7% that will and leave it up as your status for one hour? It's Special Education Week!"

This has bugged me since the first day I read it, but I'm finally getting around to blogging about it. Here's a newsflash, folks: there is no "Special Education Week." You probably already figured that out, since this status appears from time to time throughout the year. Not a big deal, I agree.
But this line gets me every time: "they are not looking for a cure, only acceptance." Guess what, folks: they want that, too! They want a cure! Really, really, they do!

Sure, acceptance is great: most kids forget that Hadley has hearing aids on her head. (Until the teacher has them write nice things about their peers. Then Hadley receives 20+ comments about how well she listens.) Classmates jump at the chance to use the microphone with the soundfield system or turn the speaker off; they all love reminding the teacher that the lapel mic is still on. Every once in a while, someone may tease, but that's been pretty isolated so far.

Acceptance is fine... but Hadley still feels different. Yes, she does really well: her speech is great; she reads incredibly well; she advocates for herself; she's a good student. But feeling accepted by her peers doesn't change the fact that her life is different than a typical 9 year old girl. It might make things easier sometimes, but it doesn't change facts.

Adults have a different version of acceptance: pretending the difference doesn't exist or minimizing the challenges that Hadley faces every day. I've had school team meetings where I've spent more time explaining the real obstacles Hadley encounters than determining appropriate services and accommodations. In their haste to show their acceptance, sometimes adults rush a conversation with their assurances of understanding, declaring that they know exactly what I mean and thereby missing the message entirely. And, yes, sometimes adults tease (it's not funny to say to me, "What is she, deaf?") or are completely inappropriate (like the parent who, at the integrated preschool open house, leaned over and whispered to me, "I hear there's a deaf girl in the class. That's not good.")

Yes: acceptance is all fine and dandy. Knowing that nearly all the people Hadley meets will try, in some form or another, to learn a little about her and understand her is fantastic. All kids need that kind of safety net in their lives. No, we don't live under an umbrella of naivete that there will be a cure for Connexin 26 related hearing loss...but that doesn't mean we don't want one.

So, next time you're tempted to be one of the 1, 3, 7, or whatever incalculable % of Facebook users to update about Whatever Week for acceptance, think for a moment and, if you really must paste and post, take a moment to edit your copy to include the word "cure." Quite honestly, we want both: for everyone around our children to be welcoming, friendly, and understanding of all their needs, special or not. Just because these particular kids wound up with an unexpected twist of genes doesn't mean we limit ourselves (or them) to mere acceptance. It's okay to hope for a cure, whether its within the realm of possibility or not. We do.

March 6, 2011

The Friend Connection

Finding other families with hard-of-hearing children seemed like such an important thing to do when Hadley was younger. It was obviously helpful to me, as I shared my ideas and complaints with other parents who understood the not-so-obvious challenges of raising a child with a hearing loss. I took it for granted that some day Hadley would want to know other kids who listen to the world through hearing aids. In our years of auditory-verbal therapy, we overlapped our sessions to meet other children and their families. This was great for me and Hadley liked it too, but there was nothing special or unique about her interactions with other kids. They were simply kids playing with kids, just with a few thousand dollars worth of technology on their heads.

We happen to live in an area with several other mainstreamed hard-of-hearing children, all of whom are being raised to listen and speak with their voices. I thought now that Hadley was older, she might seek these kids out or benefit from some regular contact with them. Hadley really likes them all, and I've loved getting to know the parents, but there is nothing special or unique about her interactions with these kids. They are simply kids playing with kids, just with a few thousand dollars worth of technology on their heads. (Are you sensing a theme?)

Earlier this winter, I was asked to speak to another mom in the area and answer some questions about auditory-verbal therapy for her daughter. Who is also 9. Who was also identified at birth with a hearing loss. Who also wears hearing aids. Who also is spirited, outgoing, talkative and dramatic. We agreed to introduce the girls to each other, and I really though it would be just like before: they'd meet, they'd have a good time, they'd go home.

What passed over the following two hours was straight out of a movie. They immediately checked out each other's hearing aids (and clothes). Hadley and E compared trials and tribulations of living life with a hearing loss (and compared favorite music and toys). They unconsciously repeated words and rephrased sentences if the other misheard or misunderstood what was said. It occurred to me that Hadley was displaying the truest version of herself to E. The thin, protective wall that often exists while playing with other kids wasn't there.

Now, some people might read that statement as a reason for like to stay with like: that schools and communities for the deaf and hard-of-hearing provide environments for these kids to be their natural selves. Instead, I took this experience as a way for Hadley to further understand how she can hang out and play with all of her friends. We talked a bit about how it felt to meet E, if they played differently with each other, how they handled sharing and decision-making...and how Hadley could use these same strategies with any friend. Hadley and E have played together and emailed a bunch of times since first meeting in December. Each time, they talk less and less about their shared hearing loss and more and more about their other shared interests. Their friendship continues because of all these "others"; the hearing loss may have initiated their meeting, but their personalities will shape and define their relationship with one another.

So, no, I really don't think Hadley needs hard-of-hearing friends now any more than she did in the past. Certainly, this might change as she grows older and I'm open to that possibility. What has remained a constant is that I still need to know parents of hard-of-hearing kids. I learn so much from their experiences and bouncing ideas off of like-minded adults. Since I'll continue to seek out these parents who are committed to raising their kids to listen and speak, I know that door to making new friendships will always exist for Hadley as well.

In the end, hearing loss or no hearing loss, it's still pretty awesome to make a really good new friend. I have a feeling this is just the first of many more pictures to be taken of these two.