Sunday, June 28, 2009

I feel like I'm on the Titanic and I've just realized there aren't enough life boats

The economy of California is a lot like the Titanic; it was big and beautiful and ahead of its time. Everybody wanted a ride and you felt very lucky to be one of her passengers, until the ship hit the iceberg.

California hit it 12 months ago, and we've been very slowly sinking into the depths of the black and icy sea. Those with resources get the life boats. Those without, the disabled and elderly, the poor and the people who depend on services, get a deck chair where they can listen to the band as they drown.

Am I taking this metaphor too far? I told you I feel like I'm on the Titanic. The worst part is that Queen Teen is on this damn ship too, and there's no way I'm going to let them steal all the life boats from her.

I don't know how to stop them, though.

State Could Run Out of Cash

How Golden State sank into budget morass

Governor's Last Stand: His Way, or IOU's

Califoria's budget cuts: deep to the bone

Wednesday, June 24, 2009

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!

Tuesday, June 23, 2009

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.

Wednesday, June 17, 2009

Did she sign the IEP?

That would be a big N-O.

I finally got the last two reports two days before the last day of school and didn't have time to read them and comment before school ended, thus ending this round of the IEP process.

Queen Teen's IEP from last year will remain in effect until the new one is signed by me, which won't happen until school begins late August. She'll still go to Summer school and will still have PT and the Intervener and instruction from the teacher of the visually impaired. Not having a signed, current IEP isn't a disaster.

In the fall, the team and I will sit together once again, this time with a brand new Special Ed teacher, and hash out the details around the Intervener. How many hours should she be at school with Queen Teen? What are her specific duties? Who else is trained to fill in when the Intervener is unavailable? And what the heck is an Intervener, anyway?

One of my classes this Summer is about Special Education Law and Regulations, which includes how to write a legal IEP. That will definitely come in handy when Queen Teen's school starts again.

Sunday, June 14, 2009

Goodbye Hug Bear

About a week ago, I went into Queen Teen's room to tuck her in and found Hug Bear on the floor. I picked up the soft, matted, lumpy teddy-bear she's slept with since she was 5 and put it back in the bed with her.

Two nights ago I helped her climb into bed with her books and while I tucked the blankets around her I noticed Hug Bear wasn't on the bed. I secretly scanned the floor, even checking under the bed, but there was no sign of him. Rather than say anything to Queen Teen about her missing, favorite bear, I left her to her books. When I went back to cover her up for lights out, I waited for the question, "Where's Hug Bear?" She didn't say anything.

Yesterday I noticed she had moved her Disneyland dolls onto the bed (baby Belle, Little Cinderella and Rosetta the Fairy). I was still puzzled about Hug Bear. Where was he, and why wasn't Queen Teen asking about him? She's never been able to sleep without him; in fact when she left him at her dad's house one time she cried every night until her dad mailed him back to her. When she was in the hospital for her feet surgery Hug Bear never left her arms. And he has been a constant companion during every doctor's appointment for the last 9 years.

While putting her sweater away, I found Hug Bear. He was shoved into a cubby with the other dolls she doesn't play with but doesn't want to give up. Hug Bear was unceremoniously stuffed in with Sally, the Russian rag doll she got when she was 2; Magenta and Blue, Pooh Bear, Little Bear, Emily, the four stuffed dogs and Dirga the kitty who purrs when you squeeze her tummy.

I stared at that stuffed bear as if I had found a bag of weed in her room. The day had finally come: Queen Teen no longer needed Hug Bear.

She had decided on her own that she didn't need to sleep with Hug Bear anymore and hadn't said a word to me, so I didn't ask her. But the thought of her most treasured stuffed bear hanging alone in a cubby on the back of her door makes me very, very sad, even though I know her giving up her bear is a good thing. She's growing up, gaining skills and maturity, becoming more of herself and not a child. I'm excited for her, but sad at the same time. I will miss that little girl.

Thursday, June 11, 2009

6 units in 5 weeks! Back in Grad School

Right now, I am typing on my friend's computer in San Francisco. I'm staying here for this week of school, which started again on Monday. Two graduate level courses in five weeks. I might be nuts, but at the moment I have to admit, I'm really enjoying this.

My friends are out of town on vacation so I have the house all to myself. Other than the low toned hum of cars on the street below my window, it is quiet. No one is calling "Mommy!" every ten minutes. There is no call from my hubby, "Honey, do you know where my(insert any item)is?" I can sit down with my text book and concentrate on what I'm reading. My body is quickly falling into its old college rhythm of staying up late doing homework, going to bed at 1 am, waking up at 9:00, and eating whatever I want. I went for a long walk in Golden Gate park before class do get my blood flowing after sitting for so long studying and I could hear myself think.

Who knew that cramming two classes into a short summer semester, which forced me to stay in San Fran all week, would be a good thing?

I shouldn't forget that it's only the first week. Next week my friends come back and I start couch surfing. Plus my workload will increase rapidly over the next couple of weeks. But for now, I'm enjoying this alone time with just me and my textbooks.

Monday, June 8, 2009

I.E.P's make me Grump.I.E

Help! I'm trapped in IEP hell!

Recently, Queen Teen's teachers and I met for her annual IEP. For those who don't know what an IEP is, it is basically a contract between the school district and myself (the representative of Queen Teen) which spells out what services the school will provide to ensure that Queen Teen gets an appropriate and accessible education. The document should be clear, concise, and complete, with specific, future educational goals and assessments of her current functioning. All future planning should be based on those assessments and reports. Each specialist writes goals and reports and then the Special Education teacher puts them all together to create the IEP.

I sat at a table with 8 educational specialists (physical therapist, mobility specialist, teacher of the visually impaired, her Special Education teacher, to name a few). The "working" IEP was handed to me and I tried to quickly look it over (I prefer to get it the day before the IEP meeting so I have a chance to read it and make notes!), but while I was reading I heard from some of the specialists that there were missing pages and "mistakes." Great, I thought. It's going to be one of THOSE IEP's.

Queen Teen is very complicated. She has multiple disabilities, including deaf/blindness, and yet she is intelligent and capable of learning. She should be a braille reader but her hands tremble from ataxia too much for braille to be an option. Neither are audio books a good choice because of her deafness. So helping her become literate is incredibly difficult, and yet, somehow, she has managed to learn some sight words, memorized all of her books verbatim, and is learning sign language much faster than I. It takes imagination, cooperation, and collaboration to create an educational plan for her. And it also takes a lot of organization.

The IEP was a complete disorganized mess.

I'll spare you all the specifics and instead simply say that after two hours of fumbling and miscommunication, the meeting ended without me signing the IEP document. Two reports were missing (and still are missing), and I need more clarification on how the intervener works within Queen Teen's program. Supposedly those pieces are in the works, but I'm a little nervous because the last day of school is this Thursday.

Did you hear that, people? School ends on Thursday and Queen Teen doesn't have an IEP document. And I will not sign it if it isn't complete.

I am not an unreasonable parent. I understand we are in the middle of an economic mess in California and schools are on the brink of shutting down. I'm not asking for the impossible, or even the moon. I just want clarity and actual written reports that are based on assessments so that her future goals and the recommendations in the IEP are backed up by those assessments. Don't make decisions without written reports. Tell me what you want to do, why you want to do it, and how you'll do it. See, simple.

So if the IEP still doesn't answer those simple questions, I can't sign it. I don't know what will happen if she goes into the 8th grade without an official IEP.

I hope we don't find out.