Editor’s note: This article is the second in a series describing one NCI at Frederick parent’s perspective on special needs parenting.
Many people living and working in the Washington, D.C., metro area have learned to speak the special language of acronyms, whether they are referring to the federal government, political groups, or other organizations. The special needs world also has its own set of acronyms, such as those for therapies, organizations, tests, and diagnoses. Some examples include IEP, which stands for Individualized Education Program, and OT, which, for most people, stands for overtime, but, for special needs parents, refers to occupational therapy.
There are also a whole array of tests and therapies you become well versed in, such as ABA (applied behavior analysis) therapy and M-CHAT (Modified Checklist of Autism in Toddlers). Special needs parents quickly learn this new language and, before they know it, become fluent in it. Learning this language is done out of necessity; otherwise, you quickly become lost and frustrated with the care and education your child is receiving.
When it comes to special education, there is a wealth of information available, and it can be overwhelming to special needs parents when they are initially faced with it. The Individuals with Disabilities Education Act (IDEA) is the federal law that ensures that students with disabilities are given educational services. There are also provisions in the law for infants and toddlers with disabilities to receive services before they begin attending school.
IDEA lays out the IEP process and other regulations that states and school systems must follow with regard to special education services. As a parent, understanding this legislation allows you to be a better advocate for your child. In addition to IDEA, each state has laws regarding special education services. It is important to learn not only the federal laws, but also the state laws.
A New School Year Means an IEP Meeting
For many parents, the beginning of the school year is a somewhat routine experience. But for parents of children who need accommodations to access the curriculum, the school year starts with an IEP meeting. These meetings help define a variety of things, from what school a child will attend to what supports he or she will receive while in school.
IEP meetings are generally held annually but can be held more often if you are developing the plan or if it needs to be adjusted. Each time an IEP is adjusted, an official IEP meeting must be held to ensure that all participants are in agreement and that the changes are for the benefit of the student.
When our son first started school, my husband and I knew very little about the IEP. We quickly started to learn about the process, players, and laws involved in special education. We are fortunate to have a close friend who specializes in special education, and she was a tremendous help to us. Before the first meeting, we sat down with our friend and went through the piles of reports and recommendations that we received from our son’s school. She helped us understand the terminology, such as reinforcers or being available for instruction, and how it applied to our son’s educational experience. She also helped us determine what questions to ask teachers and specialists, and why we should ask those questions.
By understanding the language of special education, we had a more productive conversation about our son’s education because we spoke the same language as the teachers and specialists. Our friend was also our advocate at the first meeting, which helped ensure we were getting the proper accommodations for our son.
Parents Are Part of a Larger Team
IEP meetings can be overwhelming and intimidating because of the number of people you face and the amount of technical information that is presented. As many as eight educational professionals—including teachers, administrators, and therapists or specialists who have evaluated your child—may be present at one meeting. In some cases, you may feel outnumbered and pressured to agree with the educational staff instead of following your own instincts.
As parents, you should be considered part of the team that makes decisions about what is best for the student, your child. When IEP meetings work properly, they result in a plan that benefits the staff and, most importantly, the student.
When we have an IEP meeting for our son, the educational professionals in attendance include his head teacher, speech therapist, occupational specialist, behavioral specialist, an assistant teacher, the director of the program, and a placement representative from our county public school system. When our son is able to understand his IEP, probably when he is about 14 or 15 years old, he will join us for the IEP meetings.
As special needs children become teenagers, it is important that they are involved in the process and have a voice in what resources they need in order to be successful in school. Attending these meetings also teaches them to be advocates for themselves.
In our son’s current school, we generally have a pre-IEP meeting with his teachers. This allows us to get an informal update on his progress and have a discussion about what adjustments should be made to his IEP. The pre-meetings help make the official meetings more effective.
Parents May Bring Additional Advocates
Not all parents know that they have a right to bring any individuals to an IEP meeting who they feel will support them. Some are advocates who can speak in the parents’ best interest and tend to have a more thorough understanding of the IEP process; they might be speech, occupational, or other therapists who have assessed or worked with the child, or even an attorney who specializes in education and special education. Advocates are not emotionally tied to the child, as parents are, so they can provide a more balanced, objective, and informed argument in support of the child.
Sometimes an independent moderator must attend the meetings to ensure that all sides are being heard. We encountered this early in our son’s education. After several meetings, the IEP team was having trouble reaching an agreement on the best plan for our son’s education. Therefore, we had a moderator come to the meeting to ensure the best path forward for our son. Eventually, everything worked out, and our son is now making great progress in school.
When the IEP process works as it is intended, these added individuals are rarely necessary. Over time, the meetings begin to serve as a conversation between the parents and the school in order to develop ways for the child to access the curriculum and progress in his or her learning.
An Out-of-the-Box Approach to Education
In addition to understanding the laws, rules, and processes regarding special education, it is useful for parents to know about the latest technologies and tools available. My husband and I have started to take a somewhat out-of-the-box approach to education. When our son was younger and learning the alphabet, we initially started teaching him with flash cards, books, etc. However, it was clear he was a tactile learner. So we bought him wooden blocks with the letters of the alphabet on them. We started playing with the blocks with our son, and he was soon putting the blocks in alphabetical order and learning his letters. We continued using this approach for math and other subjects, and we still handle some homework problems in this way.
As our son progresses and gains confidence, we find we are able to push him to do more and transition his learning style to more traditional teaching and learning approaches so that he develops the skills he needs for school. When our son was first learning math, we incorporated manipulatives, such as blocks or other items that he could touch, feel, and manipulate, as well as visual support, such as pictures, into each lesson. He has now progressed to completing math worksheets without requiring visual support.
It has been amazing to watch his progress. We had a few years that were rough, and we worried about his slow progress. However, in 2014, we saw our son take delight in learning and have watched him continue to make great progress. We still worry, but as all parents know, you always worry about your children.
It is important to be well informed when approaching special education, but also remember to think outside the box.