We've got a new videos section! Our first project is Who's Who on My Child's Team and What Are They For? The goal of the project is to clarify the roles of the members of a child's education team. We will be producing video interviews for eight roles and have the first one ready for viewing. Check it out below:

PART 1 OF 3

Too see all parts of the project, click HERE.

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One of the main goals of this training session was discussing the critical importance of creating respectful alliances with families in order to better serve our students. 

For this training I invited parents to talk about their experiences from their very unique perspectives. One of these parents who came to talk to us had kept a diary about her son with special needs since he was born, and he is now twenty-years old. 

She shared the diary with me because I had been her son’s teacher many years back. After reading it, I asked her if I could share her diary with the participants of this training. She agreed and when she came to talk to us, the participants had already read it and had several questions for her in regards to the information she had written in it. 

At the end of her presentation she said she had a pressing question to all of us about something that was happening with her son now that he had transitioned out of the school system, and she felt she was at dead end.

In these parent-professional exchanges, several things happened that are worth pointing out: 

Her story brought us back to what is real: the struggles, the successes, the pain, the happiness, the challenges that these families go through.

It reminded us that we are working with people who are facing deep challenges and who need to be treated with respect and empathy.

It brought to us a perspective that it is not our own, which is critical if we want to do a good job.

In a nutshell, it grounded us.

When she asked her question to us, it was a tough and complex question. None of us with our experience and knowledge could answer it right away. There was a long silence, until someone broke the ice by asking a clarifying question.  From the professional contribution it is worth to point out the following:

The answer was collective. It started by someone asking a question, another person saying something that was not exactly the answer, but with an intent to move towards the answer. Finally, two or three people came up with ideas that the parent thought could help her, her son and her family. 

It was very interesting to analyze, after the fact, how the collective contribution in the quest for solutions to complex situations was so critical

The professionals brought an “outside perspective” of people who are outside of the challenge, and who have a wealth of experiences they had had with other students and families. 

In conclusion, the final analysis found that this successful collaboration between parent and professionals happened because the parent and the professionals were respectful, and open to share and listen to each other.

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It came from a real need. The family asked for this planning meeting because they felt they needed ideas and support from a large network of people.

Happened during a transition time. The student was about to graduate from high school. More people needed to be involved in her life and new ways of doing things needed to be figured out.

Participants were carefully selected by her parents. The family invited people who cared and knew their child well.

The student was already familiar with the MAPs process before the meeting. It helped the student think about who she was, her history, and some of the things she wanted; to understand at some level that her life was about to change; and when the meeting was held, to sit through the whole meeting calm and content. We met for three hours with a break of fifteen minutes.

The meeting was carefully planned. The parents and I had several conversations before the meeting. CDBS staff advised on things to prepare, and time was carefully tracked during the meeting.

Support for the facilitator. As a facilitator I had the help of two teachers who were also interns in the CDBS-San Francisco State University teacher training program. One summarized ideas and comments throughout the MAPs on chart paper and another documented everything. With this support I was able to concentrate all my attention on facilitating the discussion, as well as having a document ready to give to the family three days after the meeting was held.

The meeting focused on specific themes. There were four themes given as choices: Home, work, community life and social life. The parents decided they wanted the meeting to focus on community life and social life.

The level of caring and creativity from the participants was very high. It was evident they cared and wanted the meeting to be successful. They very insightful, and when the time came for the action plan, they came up with excellent ideas and many of them volunteered to be the person responsible for a particular activity in the action plan.

 
A few days after the meeting the parents of this student emailed me and said that the meeting gave their whole family a completely different way of perceiving and thinking about their child’s needs and their role in supporting her.

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1. It is not important.
2. I will tell you later.
3. Never mind.
4. It was just small talk.
5. It is all settled.

How often do we communicate these ideas to children who are deaf-blind, whether we mean to or not? How often have I said or signed “later”, only to forget—more often than not—to ever revisit the issue? And how might we communicate these phrases through our own behavior in a way that might confuse and frustrate the children we serve? Consider the following situations. Spilled milk? Nevermind because I’m in a hurry so I’ll just mop it up. Your dad coming to the classroom door unexpectedly? It’s not important because he just stopped by to ask about an upcoming meeting. The fire truck that just passed with its lights flashing and sirens blaring? I will tell you later because the city bus is coming and we have to be ready. What’s for lunch? There was a disagreement whether we should have pizza or burgers but now it is all settled so you don’t need to know how we decided on pizza.

Maybe we’re in a hurry and don’t have time to explain. Perhaps we think trying to explain something is just too complicated, or that the explanation might be beyond the ability of the child to understand. And these aren’t just phrases that bother people who are deaf-blind, or for that matter people who are just hard of hearing. They’re responses that would bother anyone, especially if they were used often enough.

Hopefully you get the idea. I’d love to hear your thoughts on this. Feel free to post your comments here on our website for others to read.

If an individual (birth through age 21) has combined hearing and vision problems that are significant enough to require considerations (such as specialized adaptations, modifications, and strategies) when presenting information or interacting with the child, then that child, along with family members and service providers, is eligible to receive services from CDBS.

You’ll note that here at CDBS, we don’t use our functional definition to label children as having deaf-blindness. That is a process best left to families and local education agencies. The functional definition simply states that if the definition is applicable to a child, then CDBS can provide services to assist the family and educational team to better meet that child’s unique, specialized needs.

Deaf-blindness is a confusing and scary term, and I know this is particularly true for families of children who have recently been diagnosed with vision and hearing issues. For this reason, I hear family members say that their children aren’t deaf-blind, but rather that their children have hearing and vision problems. Others ask us why we use the term at all. I would give two main reasons for continuing its use. The first is that, when a new child is entering a program, the term alerts teachers and administrators that there are critical sensory issues for the child that must be addressed if he or she is going to be fully integrated into the instructional day and the school community. Secondly, the term “deaf-blind” represents a community of children, youths, and adults throughout the world with a rich and proud history of success, innovation, creativity, courage, and undaunted spirit.

Maurice Belote, CDBS Project Coordinator

Cristi then went on to write about her own observations of the student:

She is starting to chew tiny pieces of food. I watched her as she took the smallest bites possible and daintily chewed them. It was pretty cute to see her do this. She initiated taking her cup and drinking from it. She is also MUCH better at using her object calendar. She carries each object one at a time, attached with Velcro to the outside of her little fanny pack. She knows to pull them off when it’s time. It’s still a tiny bit hard for her but she does initiate it herself.

Cristi ends her email by writing, “It’s all pretty cool stuff. Muy bien!!!”

I think it is very important to celebrate the accomplishments of the children we serve. It’s also important to recognize the efforts of the children, and the efforts of the families, and service providers that have and continue to support the child over the years.

Of course we know that in our work, doing our best everyday is the right thing to do. But when working with children with complex specialized needs, we may not see the point of the enormous effort we put in. We don’t always see the light at the end of the tunnel but, as this story demonstrates, there is light at the end of the tunnel.

I want to acknowledge this child’s educational team. She has been served by one of the best educational teams I have ever worked with. They work with a sense of joy and pride in what they do. They care about and respect the child, and work as closely as they can with this child’s family.

Kudos to All!

Gloria Rodriguez-Gil, CDBS Educational Specialist

- Cristi Mercedes Saylor, DHH itinerant teacher, East San Diego County

In my work as an itinerant teacher I have had the opportunity to work with several children or young people who are deaf-blind or who are deaf and have multiple handicaps. I also was fortunate to have attended several trainings offered by CDBS in the past – you know those olden golden days when people actually had money to fund such things. As I work with various teams who serve my students I have found myself wishing that they, too, could have attended all those trainings.

Recently CDBS offered a one day training and discussion on interveners to which four of the teams I work with attended. It was great for us to have the opportunity to sit and discuss what interveners are all about and the unique needs of each team. One thing that came out of the training was that people wanted more training and they wanted more time to discuss their students and compare notes with other professionals. So I said why don’t we just create our own trainings and support each other? Seems logical enough. After all we have a veritable plethora of talent, skills and knowledge – plus one of the assistants has decided to get the Utah intervener certificate – think of all the new things we can pick from her brain!

So I decided to “test the waters” and see if people really would come if I offered to facilitate this type of group. And, many people have said, yes, they’d like to come, and they don’t have the time to come often. Hmmm… what to do? I decided to set it up so that we will meet quarterly, discuss topics, ask questions and share what has worked and offer each other support in this journey. I’ve also started sending out emails and links with things of interest for people to read at their leisure. This way they can get training without having to go any place.

Our first meeting will take place in October. The plan is to keep it informal and somewhat collegiate. You know - round table discussions over food and drink? Perhaps start with an article to read and discuss, show videos and discuss them – there are some good ones out there that really are worth a thousand words – and pick one student to discuss as a group. I’d also like us to share emails and build relationships so that in between our meetings we can still offer support and information to one another. So I guess what I’m really saying is that I’d like to build a little community of people who serve children and young people who are deaf-blind and/or deaf with multiple handicaps.

And one never knows where such a thing will lead. Already it has sparked a discussion with one of our schools that serves infants to pre-schoolers who have various disabilities to start setting up a team that is always the team that serves the children who are deaf-blind. Imagine that? We would have one team that would learn how to work with these young children and instead of constantly training teams over and over with the same concepts we could train a team once and then – hold onto your socks – build on that training over time! And who knows where that might lead?! Anyway, I’m excited to be starting a new idea and I’ll keep you all posted on the progress and growth of our little community.

For those of you who’d like to join us, either in cyberspace or real space, feel free to email me at cmsaylor@sdcoe.net. The more the merrier!

Two new features:

1. CDBS now provides online technical assistance through its new Ask the Expert feature. It's also readily accessible through a permanent shortcut area in the lower-left hand corner of the front page.

2. Check out our new Staff Picks section which will be a section of must-have publications related to deaf-blindness selected by the CDBS staff.

Enjoy!

- Ty

Think about this common classroom-setting scenario: A student is doing a task, and the person who is working with him is observing him carefully to make sure he is doing it correctly. This person only intervenes when she sees the student needing help to finish the task or when he is taking too long. The only times when this student and the person teaching or supporting him have physical contact is when the student needs help. When he is doing things well he is left alone, isolated, in what other people may perceive as “independence”. Imagine that this student is deaf-blind with very limited vision and hearing or totally blind with a profound hearing loss.

In a scenario like this, it is very likely that the student who is deaf-blind may be reticent to become independent, because it will mean very limited human contact.

This scenario reminds me of a student who was totally blind and had a moderate to severe hearing loss, and who loved to ride the swings at school. The people working with him knew that the student could independently walk to the swings because he had been doing it for several years, and had shown on some occasions that he could do it on his own. When he walked independently to his destination, it meant walking alone with his cane because the person walking with him would be looking at him at a distance. So what usually happened is that this student stopped several times on the way to the swings waiting for some kind of touch before resuming the walk. Was this only prompt-dependency, or was he looking for some kind for human contact? Sometimes when he was prompted with a touch cue on his arm, he even looked for the adult’s arm asking to walk with her using her as a guide. 

These are some things that you can do that may help lessen this kind of situation: 

• Be aware that the child or youth who is deaf-blind who has very limited vision and hearing is isolated from others when there is no physical contact.
• This student or youth may be stopping in a middle of a task that he already knows because he may want to interact or have contact with another person. This may be the way he had learned to communicate with others: I stop, and then they will touch me, and perhaps tell me something.
• Do not limit your interactions to only supervision: “I observe you and I intervene only when you need help, otherwise I leave you alone.” This would be an incomplete approach.

The relationship and in consequence - the interactions - should mostly be about sharing an activity where both parties are engaged and even have fun while doing it together; having parallel activities where both parties share what they are doing; showing an object or a place; introducing another person; having a conversation based on an object, with signs.

- Gloria Rodriguez-Gil, CDBS Education Specialist