Future Reflections Summer 2013
by Lydia Schuck
From the Editor: Lydia Schuck conducts research with a federally funded project that helps school districts support transition programs for youth with disabilities. She is the mother of a twenty-year-old blind daughter, a past president of the Michigan Parents of Blind Children, and an active member of the Lansing Chapter of the National Federation of the Blind. This is the first of five articles she plans to write about the transition from school to career or higher education for blind young people.
How many times have you talked with your child about grown-up goals? Some kids bring it up all the time: "When I grow up, I'm going to be a ..." Sometimes those ideas may seem wildly impractical. If your child is blind, you might think you ought to explain that it just won't work out for him or her to become a NASCAR driver.
But wait a second. When your little girl who is sighted said she wanted to marry Prince Harry, did you tell her that it was impossible? Probably not; you knew she would figure it out eventually on her own. It is the same way with blind children. They can figure it out themselves. Let them dream big ... who knows what might be available to them in a few years? If planes can be operated by computer from half a world away, in a few years a person without vision might be able to become a pilot.
It isn't our job as parents to make our kids line up their goals with ours. It is our job to help them keep moving. (Ever heard the phrase, "You can't steer a parked car?") As our kids move, we stay alongside them; then we move a little further away, still within reach. Finally we're only in reach by phone, if they think to call or to answer their cell phones.
Every time your child says, "When I grow up ..." turn and listen. Growing up is a long conversation, and nothing has to be settled right now. If your child knows you will listen and will not burst his bubble with too much reality or advice, he'll keep talking to you over the years. You can say, "Great idea!" Or how about, "I will be so proud of you when you get that all worked out!"
But surely, when your child reaches middle school, this conversation has to get more serious! Many schools require each student to develop a plan for her high school courses, designed to fit her goals. Even as goals change, just continuing to move forward is the best plan. Parents of youth who have disabilities can use the IEP process to make the forward movement even more meaningful.
First of all, ask your child's teacher if the career development activities at the school are all accessible. If the computer website or software program used by the students for career planning is not fully accessible, the school should not be using it. If the school is using inaccessible materials, you will need to work out an alternative plan in the IEP meeting and talk to the school board about getting a new program for everyone. Universal design principles tell us that accessibility features are good for lots of kids who don't have IEPs, as well as for those who have identified disabilities.
When you are sure your child will be fully included in the career development programs designed for the complete student body, it's time to turn to your child's individual needs as a blind youth. The blindness skills, sometimes called the Expanded Core Curriculum (ECC), are a set of skills familiar to teachers of blind and visually impaired children. You can refer to these skills at the IEP meeting to identify specific needs for your child. The nine skill areas of the ECC are Academic and Compensatory Access, Assistive Technology, Career Development, Independent Living, Orientation and Mobility, Recreation and Leisure, Self-Determination, Sensory Efficiency, and Social Interaction. Many administrators and special education directors are not familiar with these categories, but your child's teacher of the visually impaired can bring materials to explain the nine skill areas.
Four skill areas of the ECC take on new or increased importance as your child approaches graduation from high school. Academic and Compensatory Access, Career Development, Independent Living, and Recreation and Leisure (Community Participation) become more important as your child moves through and from high school.
In adulthood, your child will not have the kind of academic support that is provided in elementary, middle, and high school. Your child will need skills that can transfer to any learning situation. By the time your child is in middle school, you may realize that high school and college level reading require a more efficient reading medium such as Braille. Use the IEP to get Braille instruction for your child.
If a parent signs an IEP, school personnel take that to mean that the parent is satisfied with the services the child will receive. School districts are under time pressure to complete the IEP process. You should not sign an IEP that does not serve your child well. Keep going back to the table. Ask a person who has good blindness skills to come to the IEP meeting to support the value of Braille and other blindness skills. If you anticipate a problem, schedule a pre-IEP meeting several weeks before the due date of the final IEP.
Similarly, as your child gets older, you may realize that there are new concerns in the skill areas of Career Development, Independent Living, and Recreation and Leisure that should be addressed in the IEP. Make it clear that you will support the work of teachers in these areas, or in fact, that you are handling some of it at home and need the teachers' support. Offers of partnership go a long way at the IEP meeting. Survey research (Schuck, 2013) indicates that parents of blind youth are willing to provide instruction in many areas. Ask your child's teacher to help you with any areas of independent living.
Returning to the topic of grown-up goals, in the school year that your child turns sixteen, the IEP process must record and reflect your child's strengths, preferences, and interests. While these items are required by law at age sixteen, many states start transition planning at age fourteen. The child's IEP must include "reasonable postsecondary goals based on assessment in the areas of postsecondary education and training, employment, and if necessary, independent living skills" (IDEA 2004). If you talk about goals as you go along over several years, you and your child will have no trouble listing them before the IEP meeting. Your child will be able to talk a bit about future plans to the members of his team. If you haven't been talking about the future, it is never too late to start.
Think about the distance between where your child is now and one of the goals she has mentioned. Is it a long way? That prospect can be very daunting to consider. A helpful step in getting there is to ask a simple question. Regarding every goal your child may have, ask yourself or your child, "What's next?" What can you do to move a step closer to the goal? You don't need to figure out how to do all of it. Keep the end in mind, but in your actions, just focus on the next step.
In our family, the long-term goals have been easy to identify, but the baby-step goals between here and there seem to be terrifying. A first step that appears reasonable to you may seem much too big a change for your child, especially if he has any additional disabilities that result in high anxiety over change.
Friends in the NFB--parents, and especially blind adults and young adults--can be great assets in your child's life. If your child's teacher cannot spend much time on a particular area of the IEP, you can make an informal arrangement with a blind adult you know. The IDEA special education law recommends interagency collaboration to support transition services. This is actually a very broad recommendation. It means that when your child has identified a long-term goal to be achieved after high school, anyone in her life may be listed in the IEP to help her reach that goal.
When transition services are listed in the IEP for your child, you might ask to include volunteer services from a blind adult. Perhaps your child could have a mentoring lunch with a blind adult and a few school friends once a month. Or perhaps your blind friend's house can be a destination when the O&M instructor works with your child. A local chapter meeting of the NFB can be considered a Recreation and Leisure activity, even if you are the child's driver and companion at the meeting. Does your child write stories? Share them with your friends in the NFB.
Be creative. Think of the people around you who can add to your child's life. At first this may seem to your teacher like extra work. If you stress your willingness to be a partner and to support the teacher's ideas and efforts, the teacher will know that you both want the same things: a satisfying adult life for your child.
Get the conversation started with your child and keep it going. What do you think about doing when you are older? Where do you think you'll live? Do you ever think you might like to go to college? For you as the parent, the most important question is simply: What's next?
IDEA 2004. US Department of Education.
Schuck, L. (2013). "Parent Perceptions of Transition Planning for Blind and Visually Impaired Youth." Unpublished manuscript.