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by Geralyn Anderson Arango, EdD
They're everyday terms, just words from the dictionary:
empower — v. to give official authority or legal power to.
inclusion — n. a relation between two classes that exist when all members of the first are also members of the second.
Does their commonness make it any easier for parents to use them when it comes to their children, to feel empowered to support the inclusion of their child?
And if not, why do these simple words sometimes become abstract and unreachable concepts when used to define what parents work toward to advocate for their child?
Perhaps some answers lie in asking more questions as parents. What do we want to be empowered to do? What does inclusion look like for our child? What do we want our child to be included in? Why must we empower ourselves to advocate for what we feel is best for our child? And finally, who and what is out there to help us?
Becoming an empowered parent is about recognizing our authority and legal power, just as it is defined in the dictionary. Advocating for the inclusion of our children, as we define it, means that we need to develop the skills and values that help our children have membership in school, in the community and elsewhere.
The best way to predict your future is to create it. — Anonymous
Having a child with a disability makes us the parent of the child of today and the adult of tomorrow at the same time.
With greater clarity than at any other time or with any other person, we parents envision and worry about a time when we will no longer be around to care for our child. This feeling can be terrifying, but it can also help us to see and plan for a bigger picture, using what we do today to help create opportunities and possibilities for our children.
Often a visual or written statement can offer parents the chance to think through what they really want for their child. And as the child grows older, she can gradually assume ownership of what her parents began.
A vision statement consists of considerations of a child's life as a young adult, including where the vision writers hope their child will live, work, and with whom the child will form relationships, as well as any other things they envision for the person.
A vision statement can be revised again and again as needed, as needs and possibilities evolve, and as the child grows.
A PATH is a visual tool for “Planning Alternative Tomorrows with Hope.” The child, friends, family and support people can create this graphic. Planning can be for a set period of time: a month, a year, 5 years, whatever the team decides.
The group looks at life now, the people needed to empower the person or family toward their goal, and what possible steps can be taken in short increments to reach the long-term goal.
The idea for Paths came from business strategic planning. They help set goals and break them down into manageable steps. For a sample PATH, see http:// challengingbehavior.fmhi.usf.edu/personcentered.htm
Asking questions is a good way of finding things out. — Big Bird
None of us is the first parent of a child with a disability. We can learn from the successes and mistakes of those who have done what we are trying to do.
Join the local support group that relates to your child's disability; they can offer information, support and links to other agencies and committees where you can learn or become a member, as well as an opportunity to meet families who are dealing with issues similar to your own. (See the Organizations section of the SpecialKids Resource Directory.)
Another great way to pick up a lot of information in a short time is to attend informational conferences.
Knowledge is power. — Sir Francis Bacon
Sometimes we can still feel as if we are the only parents out there who have a child with a disability, no matter how many people we meet who are dealing with issues like ours.
When those issues aren't exactly ours, when we have to go to planning meetings, we can feel alone as we sit at the table. Things we thought we knew evaporate as we sit and talk with the people who work with our child, and we might listen to educational and therapeutic jargon that can seem like a secret code.
It is here that parents need to know what their children are entitled to by law. Your membership in local support groups, your attendance at informational conferences, and the vision you have for your child will be supported and enriched by taking time to learn the laws that are in place to support children with disabilities.
The Individuals with Disabilities Education Improvement Act (IDEIA), is the most recent reauthorization of laws that have been in place since 1975. The Americans with Disabilities Act, ADA, also provides protections for children and adults with disabilities.
There are two signatures on an Individualized Family Service Plan (IFSP), a written document that identifies services and supports needed for children ages birth-3 and their family, or on an Individualized Education Plan (IEP), for children older than age 3.
There is a signature for attending the meeting, and a signature that states agreement with the contents of the document. While you will want to sign the first one, you can feel free to take time to think before you sign the second, which states your agreement with the document.
It's okay to ask the team to allow you to read over the IEP or IFSP, even take it home to review before you sign. You need to see that this document works with your vision for your child, that its goals make sense to you, and that your child's placement is suitable to you, and that takes time.
Don't forget to bring a friend, an advocate, another person to listen with you at your meeting. Or that you, as parent, can write a letter to have an IEP review meeting if you need to reconsider elements of the IEP/IFSP any time after you've signed it.
And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom. — Anais Nin
Finding the empowerment that you need in order to advocate for your child makes you vulnerable. Every “what if” can seem scarier because it's your child. You don't want to make a mistake or do something that would hurt your child. You must do or say or ask for things that you wouldn’t have to deal with if you weren't the parent of a child with a disability.
Finding the empowerment you need for the inclusion of your child in school, community and elsewhere can be like bursting out of the bud and blossoming for you as well as your child — exciting, terrifying, but necessary.
There might be mistakes along the way, but nothing great was ever achieved without a bit of risk. Remember that you are a family member, an IEP team member, and can be part of organizations and committees, and that you must keep looking forward, not back. None of us knows the answer, but if we follow our informed vision, we will be okay no matter what.
• • •
If you look back in history at the way mankind has viewed disability, or difference, you will see that in our collective conscience there is a view that different is bad. People who are different have always had to work harder for their right to participate in the mainstream, to “get on the bus.”
They have had to demand access to what others have always had. In collaboration with others who believed that different is natural, large and small victories have been won. But there is much work to be done.
The laws that are in place to support children with disabilities are the framework, the protection and the start point, but are useless if not understood and followed by all the people involved.
Still, laws cannot make people believe and embrace the ideas that all children can learn, that all means ALL, that a child's disability is an attribute, not the whole child, that a child with a disability needs to be supported, not fixed & that children who learn together learn to live together.
“That starts with me,” I found myself thinking, before my own son's IEP meeting just a few weeks ago.
Geralyn Anderson Arango, EdD, is an associate professor of education at Holy Family University in Philadelphia.