Transition

Queen Teen's IEP was last week, and it was a big one. It was her tri-annual IEP, which is always extra complicated, and because she will be 16 in May (!), a transition plan was added into the mix. There were extra people and extra forms and a brand new section of IEP paperwork to fill out. The meeting took over two hours simply because there was so much to discuss and plan for. I thought I was ready. My husband and I had been talking for a month about what we thought Queen Teen will need to live as independently as possible. I had also met with Queen Teen's Regional Center worker and the Regional Center transition coordinator  to discuss  my concerns and questions about her future. I'd done my homework on what should be included in the transition section of an IEP and I even made gluten free chocolate brownies for the meeting. Yep, I thought I was ready.

I was so wrong.  

The meeting itself was fine. Everyone, from her teachers and aids to her therapists, are working incredibly hard for Queen Teen. Their energy and creativity are limitless, which is good, because Queen Teen is a hard kid to work with. Deaf-blindness and a severe mobility impairment make everything a challenge; just finding out what she wants for lunch can take ten minutes. She is smart and funny and eager to learn, which I think is what fires people up so much to help. Nobody wants to slack on this kid when she's trying so hard. 

So the educational part of the IEP was fine. The team works well together and her goals are strong. The reports from the PT and OT looked good and I even agreed to allow the PT to cut back on direct service because it was becoming disruptive to Queen Teen, although that idea took me a few days to think about. 

What got me was the planning for the future. 

I have dreams for Queen Teen: all parents do. We want our children to be happy and productive and maybe find someone to love. I envision Queen Teen living on her own in a house with roommates, supported by a live-in aid and a nurse. She will work at the local hospital in the NICU, rocking newborn babies whose mothers are unable to be at the hospital regularly. Or maybe she'll work in a day care center with toddlers. Queen Teen is crazy about babies, so I know she'll want to work with little kids someday. 

My husband and I also talk about what we'll do when she's grown up and it's just the two of us. What will we do with the house? Will we stay, or move? Will she want to stay in the house? I'm convinced Queen Teen will live outside our home because she is far too independent and stubborn to want to live with me forever. She's going to want to make her own way in the world, with Rick and I still there to support her and help her when she needs it.

But now, it's really starting to happen. Real, concrete plans are being made. Ideas for what types of work she may do are being discussed. Her educational goals are being geared toward what skills she will need to thrive and survive as an adult. She will turn 16 next month and in two years she will be 18 and able to make her own choices about her life. Will she decide to stay in High School, or move on to a Vocational Program? Will she want to move closer to her father in the Bay Area? Will she insist on living with me until she's 30? Will she be able to live on her own?

I had to fight back tears several times during the meeting, not entirely sure why I wanted to cry. Planning for Queen Teen's future is exciting. I want her to have her own life. But why did that idea make me want to grab my daughter who was sitting beside me during the meeting, and hold her tight. I had asked her if she wanted to stay for the meeting and surprisingly she said yes. She got bored pretty quickly, but didn't want Rick to come and pick her up. She chose to stay. She ate brownies, chatted with one of her teachers, and looked at books. Which right there is a huge step for her. She hates it when people talk about her and usually runs as far and as fast as possible from any kind of IEP.  We'd all talked to her ahead of time about what she'd like to do when she grew up ("Be a Princess.") and if she had anything she'd like to tell the team ("Not really.").  During the meeting itself she didn't contribute, but she stayed in her seat and didn't announce ever four minutes how bored she was. We were all very proud of her. This could be the first step toward her being more involved in planning her future.

As I write this, she is sitting on her bedroom floor talking to her imaginary friend "Sara" while looking at Sponge Bob books. Sometimes she is such a child, while at other times she's almost an adult. She pulls me tight, needing my constant reassurance and security, and then pushes me away, yelling at me for some silly thing like her hair slipping out of her hair band and why hadn't I put it in better. She is so beautiful I am stunned sometimes. How can this fragile creature be so strong?

She'll likely still be living with me for at least another five years; she has a long way to go before she'll be ready to be more independent. So we both have time to get used to the reality that she is growing up and will soon be an adult. Funny, we watch our kids growing up every day, celebrating the milestones, but when it comes time to start letting go, it feels as if we're being asked to peel the skin from our own arms. My baby! Don't go. Stay with me and be little and sweet. Bake cookies and draw pictures and go for long walks with me. Giggle over something the dog does, laugh at Sponge Bob with me, dream of princesses. But don't let go of me.

Not until I'm ready to let go of you.

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.

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.

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.