Say What?

One of the blogs I love to read is called "Say What?" The writer is a mom who's child has special needs, including deafness. Her writing, stories, and photos are great. Plus, she provides really good info, like this:

http://saywhatmunchkins.blogspot.com/2012/06/writing-frenzy-hearing-aid-grants.html

This is a link to a blog post about grants to help pay for hearing aids, and a video on putting in a kid's hearing aids. Just had to share it.

Ice Cream, Yogurt and Mashed Potatoes

 

(image from Burnt Lumpia)

While eating her vanilla yogurt, Queen Teen stared at her bowl for a long time, then she said, "If yogurt is white, and ice cream is white, and mashed potatoes is white, how do you know which one it is?"

I laughed. I couldn't help it. It was such a surreal question, so I assumed she was joking. But she looked at me so studiously I suddenly realized she was serious. Ooops.

"Um... well... you can smell them," I said.

She sniffed her yogurt. "Smells like yogurt."

"Exactly. If we had any ice cream you could smell that and see how it's different."

Nodding, she kept looking at me as if waiting for me to go on.

"And if we had any mashed potatoes, you could smell those and see how they're different from yogurt and ice cream."

"But what if you can't smell them?"

"Um... you can taste them. Also, mashed potatoes are usually hot and ice cream is usually cold. And yogurt is cold too, but not as cold as ice cream."

She took another bite of yogurt and then looked at me again, waiting.

"And you store them differently. Ice cream is in the freezer, yogurt is in the fridge and mashed potatoes are cooked on the stove." There. I had explained it from every angle. Now she would understand.

She nodded again and took another bite, her eyes looking dreamy as she gazed off into the distance, pondering my explanation.

How did she not know this? I mean, really... isn't the difference between ice cream, yogurt and mashed potatoes obvious?

Not when you're visually impaired.

This was another reminder of how much of the details in life Queen Teen misses. Everything she knows, she's had to be shown, through explanation, contact, and hands-on experience. There is very little incidental learning when you can't see clearly, and it gets even harder when your hearing is poor as well. You can't sit in your chair and watch Mommy cook dinner, you need to be beside Mommy going through the steps of a meal preparation with her.

Sometimes I think I've got this mommy-gig nailed, then other times I realize how much I've assumed she understands and didn't take the time to show her. What else has she missed?

Intervener training from California DeafBlind Services

On Monday, I went to a workshop on what an intervener does, taught by California DeafBlind Services. They were kind enough to travel all the way up to my hometown to teach us what an intervener is and how an intervener works with a deafblind student. All of Queen Teen's education team was there, as well as another mom with a deafblind child (who is now 20 and in the middle of the transition process) and her team of therapists and social workers. Education teams from two other counties, Marin and Contra Costa, also came and I got to meet a mom who's child is 3 and just entering the school system. So between all of us, there were perspectives from a pre-schooler, a teenager, and an adult, which made for great dialogue.

The workshop focused on explaining what an intervener is and how she/he works within the IEP team, not on training us to be interveners, which is a huge job and would require hundreds of hours of training. In fact, two universities, Utah State University and East Carolina University have distance-ed programs to train interveners. California DeafBlind Services is part of a national movement to formalize intervener training in the US because right now training is limited and sporadic. As you can imagine, there are a lot of road-blocks and hoops to jump through to set up a new profession and a new training regimen, and they are still discussing the impact all of this formal training will have on school districts being able to afford an intervener at all (can you imagine a highly skilled, one-on-one aid with a degree in DeafBlind intervention working for $10.00? Me either). I'm excited by the prospect of formalized training and standards for interveners, though. Having trained and supported staff should help deafblind students reach their goals with more ease and create a more harmonious experience for everyone.

The range of duties an intervener is supposed to know and do is overwhelming. An intervener must:

• attend trainings on effective educational strategies for children who are deafblind.
• know the vision and hearing losses of the student, as well as the functional implications of both.
• be familiar with the student's likes and dislikes.
• establish a bond and develop a trusting relationship with the student.
• know and use the student's communication style/method/system (sign language. tactile, signals, cues, assistive devices...)
• be a bridge, not a barrier; model and demonstrate for others how to interact and communicate with the student.
• provide motivation for the student to participate in activities and routines.
• provide support for the student's use of the other senses to enhance learning.
• provide opportunities for repetition and practice.
• adjust the pace of instruction to the student's abilities.
• provide direct learning experiences that are functional and meaningful
• include student participation in all steps of activities.
• view what appears to be negative behavior as communicative and work with the team to understand and address the student's needs.
• participate in program planning with the teacher and the team.
• create instructional materials.
• collect data on student.
• assist in assessments.
• provide input to the IEP team.
• recognize that the supervising teacher has the ultimate responsibility for instruction and classroom management.
• understand the IEP and team goals and how to help achieve those goals.
• act as a bridge in facilitating and supporting teachers and related service providers.
• serve as a resource on issues related to deafblindness.

... and on and on the list goes. This is just a few of the duties of an intervener. By the time we read  and discussed this information, I was worried that we'd completely overwhelmed Queen Teen's intervener who was sitting across the aisle from me. I know I wouldn't want this job.

Wait a minute, I do have this job. I've been Queen Teen's interverner for the last four years, longer if you count when she was "just" blind.

By the end of the workshop I was no longer feeling overwhelmed though, because rather than scaring everyone into deciding intervention with deafblind children is too hard, the room was excited and talkative, sharing ideas and problem solving how to implement some of the things on this list. Queen Teen's O and M instructor came up with two ideas while talking to me over lunch.


At one point in the workshop, the idea of control came up, specifically how deafblind children often have very little sense of control in their lives. This made me think of Queen Teen and her current battle with me and her teachers over what she will and will not do. I  need to think of more ways Queen Teen can have the control over what happens to her, like when we all decided she didn't have to wear her glasses any more. What other decisions can I give her to decide for herself?

It was a great workshop. Thank you Mendocino County SELPA for hosting it, and a big thanks to everyone who attended.

Do you know the way to teen-aged land?

I keep finding toys in the hallway: stuffed animals and baby doll clothes, Berenstain Bear books, Rugrats figurines, a Cinderella Barbie and Baby Cinderella in a matching blue dress, Matchbox cars, bouncy balls, a little plastic Fairy Godmother. Queen Teen tosses out three to four things every day, declaring the item as "boring," and throwing it into the hall. Yes, I try to tell her throwing things into the hallway is not okay, but it seems like this is her way of rebelling against childhood. I will not play with this toy anymore and I will throw them into the hall! So there!

I have several piles of old books and toys in my bedroom now which are in my way, but I'm making sure she's really done with them before I send them to Goodwill. Are you SURE you're tired of playing with the mini-van that goes to your doll house? Tired of reading all the Baby Honey books? Over the years she's declared herself "DONE" with a toy, only to have a melt-down when I told her I gave it away. "But I wanted that!" she'd cry. "You told me you didn't want it anymore." "No I didn't!" I've learned my lesson, so now I wait. But for how long?

Queen Teen is trying very hard to grow up, which is exciting to watch, but also frustrating. Neither of us knows how to do this. She doesn't have any teen-age role models to emulate, and I have to say I'm actually happy she isn't copying the 8th graders at her school. She still thinks boys are "ucky," and cell phones are mysterious. She likes clothes and shopping, but there's only so much we can buy. She spends a lot of time looking at her bracelet collection and necklaces, trying them on, admiring herself in the mirror, taking them off, then yelling for me to help her untangle them. She hates makeup.

Her room is getting emptier and we still haven't found anything to replace all the items she's tossing. What will she do with her time when she no longer wants to play with toys?

Deaf-blind children do not learn incidentally. They need to be SHOWN what is going on around them. They need to be taught how to be social, what to wear, what to say, how to interact with people. She isn't picking up on the subtle clues that other kids do that show them what growing up is like. All she knows is that her old toys and books don't interest her any more, but she has no idea how to take the next step.

I need ideas, people. How do I show my 14 year old daughter how to be a teenager?

Did you know that this is National Deaf-Blindness Week?

In 1984, President Regan made the last week of June into Helen Keller Deaf-Blind Awareness Week in order to commemorate her birthday (June 27, 1880). The purpose of this week is to enhance the awareness of the deaf-blind population and their need for recognition within society.

(from the website Health News)

The Helen Keller National Center for Deaf-Blind Youth and Adults has more information about Deaf-Blindness week as well as articles and resources about dead-blindness.

Spread the word!

What Is an Intervener?

An intervener is a highly trained, one-to-one aid who is a specialist in deaf-blind communication. Her primary job is to help the student understand and interact with the student's surroundings. Events in school go very fast and if you're a child who is both blind and deaf, those classroom events can be incomprehensible. An intervener helps bridge the communication gap and helps the child keep up with the pace of school. She also facilitates the child's interaction with peers and teachers. The trick is to know when to step in and help the child, and when to step back and allow the child to communicate with peers on her own. An intervener should not become a crutch that the child depends on solely for communication. A well trained intervener enlarges the child's world, she doesn't isolate the child from normal peer interaction.

Here is an explanation of what an intervener is from the Texas School for the Blind website:



In educational settings, an intervener is a staff person who provides individual support to a student who is deafblind. The term "deafblind" refers to a combination of a vision impairment with a hearing impairment that affects the way a student is able to access information and function in the educational environment. Even mild impairments can have a profound effect when combined with another sensory loss. A student with deafblindness is defined by the state for educational purposes in 19 TAC §89.AA, Commissioner's Rules Concerning Special Education Services, §89.1040(c).

There is an array of instructional models regularly used within traditional general and special education settings that may potentially provide the unique instructional support needed for a child with deafblindness. However, when traditional models fail to provide access to appropriate services, another option for the IEP committee is to designate a support staff as an intervener assigned to the child.

An intervener is a paraprofessional with specialized skills and training who is designated to provide direct support to a student with deafblindness for all or part of the instructional day. The intervener supports the existing service delivery model in implementing the student's IEP. The decision to use an intervener is based on the level of support a student currently needs to effectively participate in his or her instructional environment. Additionally, if a student with deafblindness requires extensive and novel modifications to the existing educational model, the services of an intervener can be used to simplify the process for the other members of the educational team.

Though the use of interveners for students with deafblindness is relatively new in Texas, the effectiveness of the model has been validated through widespread use for many years in Canada, and more recently in Utah and several other states. On its web site, the Canadian Deafblind Rubella Association defines this kind of intervention as "the process that allows individuals who are deafblind to receive visual and auditory information that they are unable to gather on their own in a way meaningful to them such that they can interact with the environment and thus be enabled to establish and maintain maximum control over their lives."

In an article on Utah's program to provide interveners in schools, the following basic definition of an intervener is given. "An Intervener is specially trained to provide clear and consistent sensory information to an individual who is deafblind, compensating for both vision and hearing loss in such a way as to facilitate and enhance learning and interaction with the physical environment and with society. An intervener acts as the eyes and ears of the individual who is deaf-blind, making him or her aware of what is occurring and attaching language and meaning to all experiences. An intervener intercedes between the individual who is deafblind and the environment in such a way so as to minimize the affects of multisensory deprivation, and to empower the individual to have control over his or her life." (Henderson & Killoran, 1995.)

Understanding what an intervener is, and why this support model has evolved and is becoming more widely used, begins with understanding the needs of children and youth who are deafblind. Deafblindness, or the combination of visual impairment with hearing impairment, often presents unique challenges to educators and others working with a child. The role of the intervener is to join with the entire educational team to meet those challenges by providing individual support for the child.

Paddi Henderson & John Killoran, "Utah Enhances Services for Children who are Deaf-Blind," Deaf-Blind Perspectives, Fall, 1995

What is an Intervener?

In summary, an intervener is defined as follows:

* An intervener is one of an array of strategies and services which can be used to effectively meet the educational needs of a student who is deafblind;
* An intervener is a paraprofessional with specialized skills and training in communication and other issues related to deafblindness, who works as an essential member of the student's educational team;
* An intervener works individually with a student who is deafblind within any educational setting as determined by the IEP;
* An intervener provides access to information, environments, and materials the student might otherwise be unable to access or understand due to sensory impairments;
* An intervener communicates with a deafblind student using methods and strategies that are effective for the individual student;
* An intervener guides the student through activities and hands-on exploration of materials as appropriate based on individual learning styles;
* An intervener provides modifications to lessons as needed by the child and specified in the IEP.

There is a lot more information about what an intervener does on the Texas School for the Blind's website.

Because this person is such an integral part of Queen Teen's education, I want to make certain that the intervener is there when Queen Teen needs her. Perhaps the intervener doesn't need to be there full time, which is okay, as long as I understand the decision for a part time intervener. Right now, it feels like a financial decision rather than a needs based decision. I understand the schools are broke, especially right now in California, but we need to discuss the situation and make sure Queen Teen has what she needs to thrive at school.

I'll let you know how it goes.