Of switches and boards

It's been a pretty tough week at work. For several reasons, but I'm just going to talk about one aspect.

For those of you not in the know, I'm a speech pathologist by profession. I have been doing this for many years in many different capacities. It is a field where ther are so many options and different areas and ages to work in. Overall it has been a rewarding career.

When we moved here I was concerned about work. How could I work with language-delayed or language-disabled children when my language was newly acquired and not up to snuff? (I should point out here that my Hebrew is quite decent. Still it takes years to acquire the richness, subleties and sophistication of language of a native-born speaker. For example, I can probably say "The girl is pretty" in many different in ways in English, but in Hebrew I can say only the basic sentence--"הילדה יפה" [HayalDAH yaFAH]).

And yet, I was lucky enough to find a job at a school in Kiryat Sefer, about 20 minutes travel from Modi'in. It is a chareidi (ultra-orthodox) school and most of the children and all of the teachers and assistants are chareidi. The support staff (speech, physical, occupational ["OT"], music, and vision therapists as well as psychologists and social workers) ranges from not religious at all, to very religious and everything in between.

Because my language skills are not yet up to par, I am working with multi-handicapped children. These children have extreme motoric and cognitive issues, as well as contending with various medical conditions. Like kids everywhere, some are beautiful and some are not, some are likeable and some not so much. They have personalities and feelings and thoughts. They communicate with their eyes and their movements and their smiles and their cries. They are very special children in every sense of the word.

Few if any of these kids will ever communicate by using words spoken by their own mouths. It is my job to help these children express themselves in a more functional, organized way. To show them that by communitating more functionally they can control some things in an environment where they have so little control, where everything is done for them. That they can say yes and no and I want more and stop that and I'd rather do something else and hey, I like that toy. Where they can announce that something smells funny and where they can ask someone else how they are. Where they can tell their parents about what they did in school. Where they can daven (pray) and make brachot (blessings before eating) and say the Shema at night. Where they can make choices.

We have the tools to teach severely handicapped kids to do those things. Or at least to try. It is very hard to know exactly how intelligent a kid who can't speak or move is. But we've all heard and read about people who were "trapped in their own bodies" who have achieved many things with the use of communication tools and devices. I know that this is not the norm. But I also know that I'll never know which kid could achieve these things and which not unless I try. And trying means trying to reach the potential of each kid, whether the child's potential is going out there and making scientific discoveries or whether the potential is the child taking control by saying "yes, I want that" or "No, I don't like that".

These goals of communication are achieved by using what we call switches, and boards.



You start by recording a simple message such as "I want more" on a switch and when the child hits the switch (with his hand or his head or an eye blink--that's where the OT comes in) he gets more, immediately. Same thing if you you are using a board--you start with one or two simple messages, reinforce their use quickly and add more messages. In this way the child learns that the device or board is his means of communication; when he uses it, he has more control of the world around him.* Whatever means of communication the child has, it is crucial that many opportunities are provided throughout his everyday life for him to use it. After all, you and I take our mouths and ears (and laptops!) everywhere we go; these kids need to be given the opportunity to do the same thing with their modes of ocmmunication.

This week, the teacher, occupational therapist (OT) and I arranged a meeting with the classroom staff to review all this stuff. However, the meeting turned into a rap session. The principal of the school had been invited to the meeting, and she told us (the OT and myself) that our expectations are to high. That the classroom staff just doesn't have the time to implement the kinds of things we were asking them to implement. That they felt like we were checking up on them when we came to the classroom. They were to busy feeding and diapering and positioning the children, the principal said. "After all", she added, "you don't really expect these kids to ever be independant, do you? Isn't it enough that they are well-cared for and loved? We give them music and parties and animal therapy, to give them a quality of life, to make them happy. If they're smiling isn't that enough?" (Please note, those weren't her exact words, but they were pretty close).

I was shocked. That's all they want for these children? These children are only 3-5 years old. How could we possibly know what they can achieve if we don't give it our best effort?

The OT sitting next to me, just burst into tears out of anger and frustration and sadness. I said to the principal, "Then exactly what are you paying me for? You have an excellent staff who does those things. You don't me or the OT for that". I felt completely discouraged and disrespected.

The principal then back-pedaled and told us how wonderful and dedicated and professional we were and of course we were key players in the classroom. It's just a difference of expectations.

Let me just say that the principal is an intelligent woman who has dedicated her life to building this school and helping children and their parents. But she is not an educator, or at least a special-educator. Obviously she has some very core beliefs that filter down to the staff. Which is why I feel like I'm fighting an uphill battle, banging my head against a wall.

So we have here a bit of a professional crisis. I can't leave the job for the very practical reason of income. Yet, I need to feel good about what I do and that there is hope of progress, minute as it may be.

Your thoughts are welcome.

*There is alot more that goes into this process, I am giving you the very basic stuff.