Abstract:

Laura Reasoner Jones describes the difficulty of discussing childrens' development difficulties--and the steps to take--with parents. She calls it "a dance of diability and acceptance," and tells the story of Kerry, a child growing up with English as a second language to the one spoken in her home.

Jones, L.R. Dancing lessons. Teacher Leaders Network diaries. Retrieved from the Teacher Leaders Network 11 Apr 2008. Link: http://www.teacherleaders.org/old_site/diaries04_05/LJ26_04_05.html 

Full Text:

Dancing Lessons

And so it begins, the dance of disability and acceptance. I watch this happen every year with one or two of my students and their families and feel saddened by the inevitability of it and my powerlessness to make it easier. And I remember it in my own family, and those memories make it both harder and easier for me to help others.

It is a dance — families step toward you, away from you, and back toward you, sometimes smiling, sometimes weeping. And for some families it never ends. My little student Kerri's family's dance started last April and is just coming to a climax. At my insistence, she is going for her formal special education testing next month and her future with me is uncertain.

This is a particularly difficult situation because the family's primary language is Korean. When I first met the two little girls in the house, Kerri at age three and Linnet at one-and-a-half, they only heard Korean except from me in our lessons and from TV. They never visit any of the local attractions or parks, and have no friends in the neighborhood. Their parents have college degrees and they live in an outrageously expensive house, but something is missing here. Is it the absent extended family component — the nosy sister-in-law who compares her kids to these two? Is it the grandmother who says worriedly, "Shouldn't she be talking by now?" Is it a cultural issue? Is the mom afraid to admit that something is not quite right? It is difficult to tease out, and therefore difficult to address directly.

Last April, after I had been making weekly home visits for six months to address language goals, we increased special education services to twice a week at my instigation. This meant Kerri got two hours of intensive language training a week, with the expectation that the parents would carry this over during the rest of the week. I tried, I really did. I left fun games that we would practice first so that the family would know what to do. I left picture cards for direct practice. I brought books and read them with the girls, modeling how to elicit language. I wrote down recommendations for toys, games and TV shows, receiving assurance from the mom that they would follow through. I brought her brochures from the community center, the library, and the local parks. I purchased easy computer games so that they could borrow software and use them on their two little Dell Computers (!) that held pride of place in the dining room.

And I emphasized the importance of enrolling Kerri in a community preschool so that she would have good language models. We went together to the nearest private preschool, within walking distance of their house, and observed the classes and talked with the director. And then summer came and everything stopped. Her parents chose not to enroll Kerri in our summer special education program, assuring me that the family would work on language over the summer. But they spent a month in California with extended family, where the girls heard nothing but Korean for days on end.

When I returned in the fall, I found a little progress. Kerri had learned to count and name colors, both in English and Korean. But there was still no conversation in either language. And the most difficult thing to deal with was that she understood everything we said and asked her to do. So, around the house, she appeared to be functioning perfectly; she just didn't use more than one word in either language at a time. And her little sister talked more than she did.

Her mother had enrolled Kerri in the preschool I recommended and she was attending twice a week. So, I had hopes that she would begin to talk. But then the family went back to California for a month-long visit and the mother withdrew her from preschool, and progress stopped again.

So, on Kerri's fourth birthday, as we reviewed her new annual IEP and formulated goals for the coming year, I told Kerri's mom that I really felt strongly that we needed to refer her for more intensive special education testing to determine why she was not talking more. This was one of the most difficult conversations I have ever had with a family. It is easier when you sense that they have just been waiting for you to say something.

That was not the case here — the mom seemed to be shocked and hurt that I would feel that we were not making progress. She physically withdrew from the meeting and would not look me in the eye as we finished up the IEP. And as I left, she said in her not-quite-broken English with a nervous laugh, "You do good job." That just about killed me. No, I am not doing a good job! If I were doing a good job, her daughter would be talking now. And because I don't know what else to do, I have to send her on to someone else. I can't fix this one!

In my heart, I know that the family could have done so much more for Kerri, and maybe she would have improved if they had. But it isn't the mom's style to reach out to other families in the neighborhood to form a playgroup, or to keep Kerri in preschool, or to take advantage of all of the wonderful child-oriented activities in the Washington area. She won't go to the library story hours or join a pool or put the girls in dance or gymnastics lessons, all the activities that suburban moms do and complain about all day long. The family is totally isolated in this $800,000 home and nothing I did could change that. But I still feel I could have done something to prevent the descent into increased special education that I feel is in Kerri's future.

It is a dance, and I have danced it myself. As the folksinger Ann Reed sings, it is "Two steps forward, one step back." Sometimes I tell parents of my own experiences so that they will realize how important it is to become empowered with knowledge about special education procedures. I tell them how I got Julie her 504 plan when she was having frequent melanoma biopsies and missing classes and tests. How I walked into the high school on the last day of school one June with a completed 504 referral form that would start timelines ticking. And how, when the high school secretary said in her sugar-coated southern tones, "Honey, Local Screening won't be meeting till the fall," I said back to her nicely in my sweetest Midwestern voice, "I feel certain that the principal would like to see this" and walked past her into the principal's office to start the process. We had the plan in place by July.

The most important part of the dance is moving the parent from the denial stage to the advocate phase. I spent years in denial about my older daughter Christie and don't want any parent or child to suffer the way we did. I will walk Kerri's family through the whole testing/eligibility/placement process, holding their hands if I need to, so that they feel they understands what is being recommended and what the best decision will be. I don't want them to feel abandoned by me or the system. We step forward together into this new phase of the dance, and I hope that they will stay with me for their daughter's sake.

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