- Fragile X-associated Disorders
- Treatment & Intervention
- Support the NFXF
Jayne Dixon Weber
Support Services Coordinator
Going to an IEP meeting was always an emotional experience for me. After a couple of years of meetings with a group of people—teachers, psychologists, administrators—who had obviously already made many decisions regarding my son, and meetings where a “draft” IEP was handed to me when I walked in the door, I decided to make some changes in what I did.
First, I took a class on IEPs, offered by our local Arc (the national organization for people with intellectual disabilities, www.thearc.org). The best part was that they spoke about the specific IEP form that our school district used, not a generic one.
IEPs have sections that are required by law. Having someone walk me through one in general terms demystified it for me. I discovered IEPs are not that complicated. Most important, I found which sections I needed to focus on to develop an IEP that would meet my son’s needs and direct his learning.
Next, I asked my husband to come with me to every meeting. In general, when my husband was there (this may just have been my perception), the school personnel were nicer and talked to me in a more respectful way. In those rare cases when my husband could not come, I would bring a friend, but it was not the same.
I began to ask for the “draft” ahead of time. In the meantime, I would draft my own IEP. I never walked into a meeting without knowing exactly what I wanted my son to work on for the next year—and I had it in writing. In the weeks prior to the IEP meeting, I would put a notebook on the kitchen counter, in which I would jot down, as the thoughts occurred to me, my son’s strengths, needs, and the goals I wanted him to pursue.
Here’s an example of what I would bring to a meeting (these are the categories on our IEP):
Strengths: Responds well to the 1:1 aspect of reading and math, extremely motivated to do work because of involvement in football and wrestling, wants to learn to type, thrives on routine, likes to see his daily schedule using words not pictures, more focused on activities when sensory diet and when areas of high interest are used, and his desire to learn, try new tasks, and stay focused has increased.
Strengths: Loves being “one of the guys” on the football team, interacts with a lot of people in the school, has a great sense of humor, knows that he needs to have his schedule laid out for him and asks for that, thrives on routine, has a good attitude, is empathetic towards others, likes to please others.
Needs: To continue in regular education classes, continue as manager of football and wrestling teams, develop skills for unexpected transitions, learn self-calming techniques when his anxiety goes up.
Strengths: Loves extracurricular football and wrestling, adaptive PE, regular PE, and any other gross motor activities, and is in good overall health.
Needs: To continue participation in extracurricular football and wrestling, adaptive PE, regular PE, regular weightlifting, and regular health classes, be monitored for hypotonia, and use the bathroom independently.
Strengths: Likes to communicate with others, is starting to slow speech when asked, and is tolerant of being asked to repeat words when they are not clear. He likes to use “mantras” and practice what he is going to say in certain situations.
Needs: Independently decrease rate of speech, answer why? questions about the way he is feeling or something he did, and stay on topic within a conversation.
Strengths: Is very proud when he completes/accomplishes tasks, has good rote memory, has good receptive verbal skills, learns by observing, can focus on subjects of high interest for extended periods of time, and responds well to repetition.
Needs: Opportunities to use his strengths during his academic day.
Strengths: Likes to work with people, has a desire to learn to read, wants to understand money, wants a job, likes to cook, wants to do activities independent of parents, is proud to use his own cell phone, and loves music.
Needs: Become more independent as manager of football and wrestling teams, improve math skills, improve reading skills, use phone accurately and independently, become comfortable riding bus home independently, to learn strategies for calming when frustrated, and to learn to ask adults questions or ask for help.
I would also bring in goals and objectives. I was never too big on the goals where Ian would do something “four out of five times with 75 percent accuracy.” The goal should be to do it—not do it just three quarters of the time. Here are some examples of the goals I would bring into a meeting. (Note: these goals were written for a February IEP meeting; that’s why the first date for goal completion is in April.)
Will independently and with 100 percent accuracy:
- Read numbers 1-300.
- 1-100 by 4/1
- 1-200 by 10/1
- 1-300 by 1/1
- Add/subtract two-digit numbers on a calculator.
- Prompted by 5/1
- Independently by 12/1
- Will recognize the following coins: penny, nickel, dime, quarter, and dollar; and bills up to $100.
- Penny, nickel, dime, quarter by 6/1
- Dollars up to $20 by 6/1
- Others by 12/1
- Learn $1 up strategy up to $100. (For example, if an item cost $1.50, he will need $2)
- $1–$50 by 5/1
- $1–$100 by 2/1
- Will write name, address, and phone number on lines with one-half inch spacing that is legible to a person who does not know him. Spelling, capitalization, and punctuation to look like:
9876 Easy St.
Boulder, CO 12345
- Name by 5/1
- Address by 10/1
- Phone by 1/1
Detailed status reports will be sent home on a weekly basis—I received weekly reports on how Ian was doing on each of his IEP goals. It was often short and simple, but it was enough.
When it comes to writing your child’s goals and objectives, I want you to think about this: What exactly do you want your child to do/learn? The goals have to be measurable, so keep that in mind when creating your goals and objectives. If you find the school staff proposing goals that seem too general, keep asking them questions:
And finally, I would create my own list of Accommodations & Modifications. Here is an example:
- Ian needs preparation way ahead for any changes to routine.
- He needs to get places early.
- He needs a calm environment.
- He needs closure on everything.
- Materials modified to instructional level in Ian’s academic classes.
- Ian needs to know schedule ahead of time and know exactly what is going on—changes, etc.
- Feedback to Ian needs to be framed in a positive way.
- Instructional staff will have knowledge of Ian, of fragile X syndrome, and be familiar with Ian’s behavior support plan.
- Ian needs frequent breaks that involve heavy work/gross motor activities.
Do not be intimidated by your IEP. I know that is easier said than done, but sit down sometime when you have 15 minutes and just look through your IEP. Look for categories similar to what I have listed above. When you create your lists, use the terminology that is in your IEP. This will let the school personnel know that you are serious about this, and you know what you are doing.
Also, when the discussion turns to services (this is the best advice I ever received), always frame it in the words of what your child needs. It is not about what you want, it is about what your child needs. I’m not an attorney, so I cannot help you with legal issues, but I can tell you what I did and what worked for me.
My son made great progress throughout school. All children can. But it requires a lot of vigilance and work from parents and teachers. In summary, I read every book I could find on IEPs, I read everything on our state website, I read everything on the Internet I could find, I attended IEP classes, and I have my own copy of the IDEA law and regulations that is tabbed and highlighted—and which I happened to carry with me to every IEP meeting. (It somehow always ended up on the top of my pile of papers that I carried in.)