The definition of advocacy is the act of speaking on behalf of or in support of another person, place, or thing. We advocate for what we believe in and for the people we believe in. We have all been effected, either diminished or empowered by the attitudes and expectations of those around us. Imagine that no one expected anything of you. Imagine that you were perceived to be without any gift or skill or promise to offer your friends or family or the society at large. As advocates we will always battle against diminished expectations. Often from strangers or from the system at large but sometimes, from even closer to home. We must confront our own attitudes about disability, about blindness, about illness and for some of us about death to finally come to terms with and accept everything about our children and along the road about ourselves. It is from this journey I think that we develop our belief in our children and their abilities. Our role as parents, as advocates, as parent advocates, often comes down to just that; believing in our children. Sometimes that's not as easy as it sounds and getting there can be a process. For me that process involved learning to pay attention and letting my daughter show me the way. There were some things I needed to know before I could advocate well for her. I needed to know that she was not broken and didn’t need to be fixed. I needed to know that I had done nothing wrong, and had to release my sense of maternal guilt because she is beautiful just as she is. I needed to know that no apologies were/are necessary, ever. I needed to love my daughter exactly as she is and meet her where she is and respect her autonomy in order to really advocate for her. That meant accepting her completely and releasing any desire I might have to change anything about her; to make her vision whole, to make her gait “normal”, to take away anything that afflicts her. She is who she is just as she is and it is only from seeing her truly and respecting her exactly as she is that I can advocate for her.
From Elora’s earliest experience in formal education a great emphasis was placed on visual learning. Even her IEP (Individualized Educational Plan) goals stressed the importance of her residual vision. Throughout her early education I was told by well-meaning professionals that she could be a successful large print reader. This was wonderful news to me. It meant my daughter wasn’t “really” blind. This was easy for me to accept because Elora was very good at appearing sighted. She could learn a space very quickly and then navigate it very well. Her vision loss is cortical meaning stemming from her brain and affecting the vision center of her brain and its nerve pathways and other than mild nystagmus (involuntary eye movement) she had no outward indications of vision loss.
The doctors placed her visual acuity between 20/400 and 20/600. These numbers never had a concrete meaning to me. It was all in the abstract. The professionals said my daughter could see well enough to read large print and that was good enough for me. If she could read print she wasn’t really blind.
I watched over time as she struggled in school. I watched her hold a page up to her nose to see it. I observed the totally blind students who were receiving braille instruction begin to learn to read while the low vision students like my daughter floundered. It was counter intuitive to me. The children that didn’t have enough vision for large print were more successful. Shouldn’t it be easier for the kids who saw more? That was what the teachers had been saying about her residual vision all along after all? She was a legally blind child not learning braille and the totally blind children we had come across over the years who were learning braille were doing better academically.
There were many signs that her vision was nothing near what I/they wanted to believe. My heart was breaking and academically it just wasn’t working. Finally I decided to pull my head out of the sand and do some research and figure out what was happening to my little girl. I discovered a wonderful advocacy organization of blind individuals and my education in blindness and what my daughter would actually need to be a successful independent person began.
I learned that legally blind means blind and that I better get over it because it would only hold her back if I let it hold me back. I learned that those abstract numbers that qualified her as legally blind really meant that she had at least a 90% vision loss. My wonderful little girl had been struggling to learn to read and write with less than 10% of what I can see. Think about that. Legally blind means you meet the legal definition of blindness. I learned that large print might serve Elora in certain parts of her life. She might be able to write checks to pay her bills. Enlarging technology may enable her to read large print in very specific circumstances but would not provide her a path to literacy.
Learning to read is happening all the time, as part of every lesson for sighted children, they are surrounded by words. Spend a few hours on any given day consciously observing the amount of print in your immediate environment. Consider passing vehicles; busses, sides of trucks, license plates, building signs and bill boards and if you enter a store all of the advertising on every product plus magazines and circulars, the list goes on and on. Now think about a preschool or kindergarten classroom. Print really is everywhere! Our children are not seeing it.
Is it any wonder that a teacher of blind students one hour a day even 5 days a week is nowhere near enough service time to teach a young child to read? This really isn’t complicated. It’s mostly about resources. I was lucky enough to find advocates and role models within the blind community here in NYC and I learned that Elora needed to learn braille; a very simple code created by a 12 year old boy. Her visual acuity meant that without braille she would never be a proficient reader. Without braille she would be denied higher education. In fact as the reading load increased in the higher elementary school grades she would be unable to compete and would be forced into alternate assessment. Moreover she would never learn to enjoy reading. She would be denied reading for simple pleasure, an absolutely incalculable loss.
What Elora needed was EXACTLY the same as what any other child needs. She needed to be able to READ!! Not just a few halting words at a time but to truly be able to read.
If a child doesn’t learn to read by 3rd grade their education will be in jeopardy. By 3rd grade reading isn’t the main focus in the classroom anymore, they’ve moved onto social studies and math and science. By 3rd grade standardized tests are a major part of academic life. This is when parents are asked, even encouraged to move their children onto Alternate Assessment. Most parents are often ill informed about what that decision will mean in the long term. Be very clear, this path will NOT LEAD TO A HIGH SCHOOL DIPLOMA. Please pay very close attention!! Your child will answer no on every job application that asks did you graduate from high school, because if fact he/she will not have receive a diploma therefore they will not have graduated. They may receive a certificate and attend a ceremony but they WILL NOT BE a HS graduate. This will severely limit employment opportunities in adulthood. Your child may not attend college, he or she may take a class as a non-matriculating student but may not enroll in any degree program or join the military. Once on alternate assessment your child will not earn any high school credits once they are of HS age. They will not take any regents exams and will NOT earn a regents diploma nor are there at present any other options available under alternate assessment unless grandfathered in (for older students only).
I have learned as the parent of a blind child, the most valuable resource I can tap into is that of blind adults. The most frequent piece of advice I receive from the blind adults I have met is to fight for braille for my daughter now. Not to relegate her to an inferior education where she will be forced to learn braille as an adult and spend precious years playing catch up. It is our challenge as parents to try to replace that visual print with its tactile equivalent in our child’s environment. It is our job as advocates to demand that that be done in the classroom and that our blind child receive exactly as much access to braille as his/her sighted peer does to print. I have as my daughter’s advocate had to fight to have braille added to her IEP. This has been a battle on a number of fronts. The most significant has been convincing educators that they can’t “teach” my daughter to see, but they can teach her to read.
This short article is not intended to reinvent the wheel but to highlight from personal experience some places that need particular attention. Choose the right school, managing the IEP and get a good AT (Assistive Technonlogy) evaluation. Please see Future Reflections and the NFB.ORG website for more information.
1) Finding a school: The basic formula is to find a good school that meets your child’s academic goals, (these should be set high because kids will reach for the bar wherever the bar is set), in the Least Restrictive Environment, meaning a regular classroom or integrated setting because a classroom should look like the world we live in and prepare kids for the world, as close to home as possible (to increase the likelihood of social relationships in the child’s community). This is where FAPE (Free Appropriate Public Education) also comes into play; it requires a school district to provide a “free appropriate public education” to each qualified person with a disability who is in the school district’s jurisdiction, regardless of the nature or severity of the person’s disability.
2) Accessing literacy: Here’s the law; The IEP Team shall…in the case of a child who is blind or visually impaired, provide for instruction in Braille and the use of Braille unless the IEP Team determines, after an evaluation of the child’s reading and writing skills, needs, and appropriate reading and writing media (including an evaluation of the child’s future needs for instruction in Braille or the use of Braille), that instruction in Braille or the use of Braille is not appropriate for the child. (Section 614(d)(3)(B)(iii))
What does this actually mean? It means, first of all, that the school must provide Braille. Secondly, it means that four specific areas must be examined before Braille can be ruled out. The IEP team, which includes the parent(s), must evaluate
1. the child’s present reading and writing skills;
B. his/her reading and writing needs;
C. the appropriate reading and writing media (which could end up being braille, print, or both braille and print); and
D. any need the child might have in the future for braille.
Only if the results of these evaluations show that the child does not presently need braille and will not need braille in the future, can braille be ruled out. (Castellano)
3) AT (Assistive Technology) evaluation: AT as defined in IDEA;
•evaluation of the technology needs of the individual, including a functional evaluation in the individual's customary environment;
•purchasing, leasing, or otherwise providing for the acquisition of assistive technology devices for individuals with disabilities
•selecting, designing, fitting, customizing, adapting, applying, maintaining, repairing, or replacing of assistive technology devices;
•coordinating and using other therapies, interventions, or services with assistive technology devices, such as those associated with existing education and rehabilitation plans and programs;
•assistive technology training and technical assistance with assistive technology for an individual with a disability, or, where appropriate, the family of an individual with disabilities;
•training or technical assistance for professionals, employers, or other individuals who provide services to, employ, or otherwise are substantially involved in the major life functions of individuals with disabilities.
The 1992 Amendments to the Individuals with Disabilities Education Act (IDEA) states that assistive technology devices and services must be considered on an individualized basis and become a part of the Individualized Education Program (IEP) if the child needs it to benefit from his educational program.
Listed below are some of the steps that can be taken to for students who need assistive technology to benefit from their IEP:
A. Make the school aware that assistive technology needs to be considered as part of the student's educational plan. This should be done by requesting, in writing, to a representative of the school district, an evaluation or re-evaluation of the child. State that you believe your child can benefit educationally from the use of assistive technology.
B. The school district must provide the evaluation. If you receive an evaluation that is not appropriate, ask for an independent evaluation.
C. Upon completion of the evaluation, an IEP meeting should be convened to determine how to meet the goals and objectives for the student's educational plan with the use of the appropriate assistive technology.
D. Remember, according to federal law and policy, if your child needs assistive technology to benefit from his/her educational program, it must be part of the IEP and at no cost to the parent. Policy letters are useful tools in reminding the school district of the student's rights as they relate to assistive technology. If you are dealing with a negative response to your requests for proper evaluation, provision of technology, or taking technology home, for example, these letters can and should be used.
4) IEP Meetings:
The typical IEP meeting: First they can be extremely intimidating. I don’t have a professional degree and I was always the one person in the room that didn’t have letters after my name. I was however the only expert on the child in question. Many of the professionals present had met with her only briefly for evaluation purposes. Her classroom teacher and the Teacher of Blind Students were usually the two people on the school based team that had spent significant time with her. They were often truly well-meaning individuals with the best of intentions. It is helpful to recognize however, that when working in a system that most often defines a child with different abilities by what they perceive to be “wrong” with that child “that the road to hell is paved with good intentions”.
When you are in agreement it’s much easier to form a team with the other members working on your child’s IEP. It’s very nice when that happens. It doesn’t always but that doesn’t change the outcome it just makes getting there more challenging.
v Never ever miss and IEP meeting!
v Bring an advocate, if not bring a friend
v Remember you really are the leader at the IEP meeting (they just think they are)
v Consider the classification; Blind/VI supports funding which = services
v Try not to add labels onto your child unless the label comes with services
v Everyone else at the table has a short term goal or an annual goal
v Parent’s goals are lifelong goals
v You are the only one who knows how far your child has come, who knows her/his capability, her/his motivation, and her /his heart.
v For them this is one of many IEP meetings….for us this is life!
v If standardized tests are a problem research opting out
v Consider Portfolio Schools before alternate assessment
Now, making it work is where the advocacy part comes in. Be the squeaky wheel. Push the system. Make the system work for your kid. Keep a journal. Copy everything. As soon a reasonably possible have your child begin to attend their own IEP meetings, even if it's just a portion of the meeting.
If you disagree with the school district at any step in the process, you may request an impartial due process hearing. If you need legal assistance, you may contact your state Protection and Advocacy (P&A) agency. In addition, each state has a Parent Training and Information Center that may be able to offer assistance.
There is much more to say but again I’m not reinventing the wheel. As I write this Elora is on her way to turning 18. She’s is now in 10th grade and on track to receive an actual HS diploma by the time she is 21. She is still evolving and developing and reaching new goals every day. And I am still learning from her every day.