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Welcome to the World of IEPs

by Christina Goldstone

"IEP". I can't remember exactly when I first heard that title. I'm sure I had no clue what it meant or how important it would become in my family's life. The same three letters that can strike fear in the hearts of parents and educators can also make a huge difference to the life of a child with disabilities. This is the story of our journey into the world of IEPs and what we have learned along the way. It's an ongoing journey and I hope it will be helpful to others who are just beginning the trip.

The IEP or Individualized Education Plan became part of our lives when my daughter Daniela turned three. We had adopted Daniela from a Romanian orphanage when she was fifteen months old. She spent those first months in an atmosphere deprived of love and stimulation. She was first tested two months after we had her home. It was obvious from the start that she was going to need a great deal more help than we could give her at home.

Our family was living in the Netherlands; stationed at an U.S. Army base, when our daughter finally became eligible for special education services at age three (that eligibility has now changed to age two). The eligibility process was the same there as it is here in our present home in Gloucester, Virginia. We learned about IEPs for the first time when I went to my first IEP meeting. I was given forms to sign and the other people at the meeting (teacher, principal, and therapists) explained our rights as Daniela's parents to be a part of the process. They said it was our right to consent to the plan as it was laid out to us and that we had the right to examine the records, to disagree, pursue outside evaluations, and seek legal action if we disagreed with their plan.

I remember thinking, "Why would I want to disagree with their plan?" "Is there really so much faulty education out there, that I would need to do this?" I felt intimidated by the process and unsure if I was up to making the right decisions for Daniela.

Special education is a learning process for both children and their families. I have come a long way since those first nervous days. I have learned a great deal about this process and have been very fortunate to have many wonderful mentors to guide me along the way. We had our most recent IEP last week. It was entirely painless, and hopefully, very productive.

Daniela is now 11. She is in a self-contained classroom for third through fifth graders with special needs at Bethel Elementary School in Gloucester. Linda Burrell, my daughter's wonderful special education teacher, has taught for over 26 years. Daniela has been in Mrs. Burrell's classroom for several years. There are usually eight to ten children in the class with an aide, Ruby Gray, to assist the teacher. Daniela has a homeroom teacher, Anna Harwood, for lunch, resources, recess, etc. She also receives speech and occupational therapy.

Daniela has a number of unusual challenges and learning disabilities due to her early neglect. She has had difficult behaviors that have complicated her ability to learn. Her potential, like many children adopted from similar backgrounds, is still unknown. Most children have special needs that are unique. That's why devising an individual education plan is critical. Devising Daniela's education plan has always been an experiment. We try different therapies and programs to help her learn. We discard them or improve upon them depending on their success. As she grows older, she is more able to participate and cooperate. I consider myself a vital part of the team making decisions about her future in the classroom.

The most important thing I have done to make sure Daniela gets the help she needs is to read, read, read. There are many publications available to explain the IEP process and other areas of special education. Some of them are difficult to get through, but it is possible to find some with parent friendly language (such as Exceptional Parent). Many school's special education departments have a resource library that parents can access.

The next best thing I have done is to connect with other families of children with similar special needs. I did this locally by joining my city's Special Education Advisory Committee (whose meetings also provide a rich resource of information). I also connect with other families over the Internet. There are web sites and lists for parents of children with even the rarest disabilities. I have found remarkable support and ideas from families who have adopted children like my daughter. Some have faced tremendous difficulties in getting their children the specialized services that they need. I don't know what I would do without my e-mail friends and their wisdom.

Mrs. Burrell, Daniela's therapists, my husband, and I decide what the most important goals are for Daniela each year. IEPs are traditionally done once a year, but goals can always be reevaluated during that year if they have been set too high or too low. We communicate with each other frequently and revise things as needed.

When Daniela was in the first grade, I requested that she be in a regular first grade class for reading, something I thought she could handle. When it became obvious it wasn't working, we reworked her IEP to change reading back to her special education classroom. It's hard when things don't work, but it was better to be realistic and not have Daniela's self-esteem plummet when she couldn't keep up. This year I asked Daniela what she thinks is important for her to learn. She told me she really wants to learn cursive writing, so that was added to her goals for the coming year.

I asked other families, including my Internet friends, what was helpful to them in planning their child's IEP. They had lots of great ideas, which would be applicable to any family. Many children in special education are not in a self-contained classroom like my daughter, but in a regular classroom with special or pullout services. These ideas work well for everyone.

  1. Become involved, in a positive way, in our child's school. Children with special needs demand a great deal of individual time and attention. By offering to help out, in whatever way possible, we give teachers time to do other things in the classroom. It could be offering to copy something on a printer, or taking off work to help on a field trip. It is much easier, from their standpoint, to work with families who want to work as a team.
  2. Express our appreciation to the teachers, therapists, and principals involved whenever possible. Teachers love letters that are sent to their supervisors about their efforts. Our school system recently held it's first special education award reception. It gave awards to teachers and therapists nominated by parents for extraordinary efforts on behalf of their children. Our children will be the ultimate winners of efforts like this.
  3. Get outside evaluations and testing if necessary. It's possible to request this to be covered at the school system's expense (which may or may not be successful). Even if we have to pay for it ourselves, they must consider outside evaluations in their determinations. We did this two years ago and it helped to initiate some new therapies that have been very helpful. If a child has unusual disabilities that a school has not dealt with before, it's important that they clearly understand our child's unique history.
  4. Include special accommodations for learning in the IEP. They can include: disciplinary procedures, seating, extended time for assignments, the use of tape recorders for notes, writing with a laptop computer instead of by hand, behavior and homework notebooks to take home, etc. We know our child best. Teachers often welcome ideas that will help our child succeed in the classroom.
  5. Take a tape recorder to the IEP meeting or take good notes.

It's not always possible for IEPs to work out successfully. School systems don't always agree with what we think our child needs. Things can get very nasty, with lawyers, mediators, and courtrooms involved. It's difficult to keep things on a positive level when it gets to this stage. Parents who are involved and informed about the system stand a much better chance of being heard and respected, but unfortunately, sometimes we still have to fight for our child's rights. We do what we have to do.

Daniela's education has taken some rough turns during the past eight years. It has taken a great deal of effort to get her where she is today; a wonderful young woman who enjoys school and all it has to offer. She has come a long way in her academic, behavior, and social skills. We couldn't have accomplished anything without strong IEPs outlining her needs and goals, many of which she has met and conquered. Being a well-informed part of a team, with Daniela's best interests in mind, has been essential in helping her achieve her highest potential.

Christina Goldstone is the mother of Marcy, age 19, a college student, and Daniela, age 11, adopted from Romania in 1991. Christina is also a radiologic technologist, radiation therapist, free-lance writer, and an advocate for children in the U.S. and in Romania. She is the author of the book, "Come to the Window," written about life with Daniela, who struggles to overcome her early life in an institution. For more information write Christina.