Sunday, August 12, 2007

Including Everyone

This is the last post about the conference I attended last week, I promise. I just need help figuring out something, and I hope some of my readers will have ideas.

As I mentioned, childcare services were provided for the parents that attended the conference. Most of the parents who attended are members of our state-wide family support group for families with children who have deafblindness. This support group has a family retreat every year, and this year we decided to hold it in conjunction with the conference. At every retreat for the past eight years, we have provided childcare, and things have usually gone very well. We had a situation this year though that has thrown us for a loop, and we need to figure out how to solve it.

One of the children registered for childcare was a teenaged girl that we have only seen once before. However, several parents have been in contact with the girl’s mother this past year because of school problems. (I wrote about her in a post back in May - she is the daughter of Mom2 in that post.)The girl attended a residential school for the deaf and blind – the absolute worst school of this kind. She began at that school when she was much younger, yet still she has not been taught to communicate with a formal communication system. Without a formal communication system, this girl has resorted to aggressive and self-injurious behaviors to communicate. She was expelled from the residential school because of those behaviors, spent a while in a psychiatric facility, and hopefully within the next few weeks will be moving to another, much more appropriate out-of-state residential school. (The choice for residential services is her mother’s. It is not a choice I endorse.)

When the family registered for the retreat, we didn’t hesitate to agree to provide childcare. We (the childcare director and I) decided we would assign two people to be with the girl at all times, and these two people were extremely qualified. We also made plans for quiet time if necessary, and worked hard to provide other supports we thought she might need. Things went well for the first ½ day.

Since this girl has no formal communication, she wasn’t able to tell us that as the first day progressed, she was becoming more and more anxious. None of us knew her subtle signals, and because her mother didn’t drop in during the day to check on her, we failed this child. Right after lunch, as everyone was preparing to go swimming in the hotel pool, the girl became physically aggressive. In a matter of seconds, she became an extreme danger to herself as well as the other children. One of the aides assigned to her was a teacher who had been trained to deal with similar outbursts, and her training kicked in. However, three people were needed to physically restrain her and protect the other children. During this restraint, the girl bit one of the aides twice – a bite that tore muscle and may have caused permanent damage to the aide.

We had to tell the mother that we could no longer provide services for her child for this retreat, and that bothered me more than I can say. More than anyone, we need to be able to help other families. Any one of us could find ourselves in a similar situation, and after having been given up on by the many professionals with whom we deal, many of us feel the other families are our last hope for understanding and assistance. Yet we couldn’t provide that to this family.

So, I need ideas. I don’t want to exclude this family. I don’t want the family to feel like they are not welcome at future retreats. We need a plan for this family and for other families, mine included, should this situation arise again. Does anyone have suggestions…?


Jodi said...

That's a tough one. Have you thought about asking the mom for her suggestions? It seems like providing two people for one teen would communicate that you've tried to provide the support this young woman needs, I'm not sure what else you could do.

Ashley's Mom said...

Jodi, we have talked with the mom, and in fact, asked for her suggestions prior to the retreat. Unfortunately, since the girl is in a residential facility, the mom has not had a lot of experience in dealing with the behaviors. I believe the child has been in the residential facility at least since she was a toddler. The only thing the mom did tell us in the pre-childcare interview was not to tell the girl "No", but she couldn't give us definitive reasons why not. (There are some cultural issues at play also. The family is from another country.)

This is a single mom (marriage broke up over this child many, many years ago and mom was left with this girl while the rest of her typically developing children went to live with dad). It's really a tough situation, and I just want to figure out how to get the mom both training and respite during that training. We might not be able to, but I haven't given up yet.

The sad thing is that the childcare worker who was bitten is considering legal action now, which will open a whole new can of worms, and may effectively shut down all services of our organization.