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Mother of a boy with FXS and co-leader of Fragile X LINKS Group of Eastern Massachusetts
When I was pregnant with my son I had many visions of our future. I envisioned watching him learn to walk and talk, hearing him say “I love you” for the first time, teaching him to read, and reading books from my childhood to him. I envisioned standing at a bus stop holding his hand on the first day of kindergarten. I envisioned sleepovers. I envisioned my husband teaching him to drive a car. I envisioned nagging him about his long hair or dirty room. I envisioned watching him graduate from high school and college. I envisioned him getting married. I envisioned him making me a grandmother.
So many visions.
What I never envisioned were armies of speech, occupational and physical therapists invading our home. I never envisioned prying my 3-year-old child’s hands from mine in order to leave him with strangers. I never envisioned days and nights of worrying about what was happening to him during all those hours he was at school because he couldn’t tell us. I never envisioned having to choose a career path for him or planning for a safe place for him to live when we could no longer care for him.
Our diagnosis of fragile X syndrome compelled us to decide on new visions. Our entry into the public school system then created a need for us to put those visions into words—something we got pretty good at with practice.
Last year this was added to our son’s IEP as the team’s “Vision Statement”:
The team envisions that with the additional support of a self-contained classroom, beginning in September 2011, Caleb will make progress with the skills required to be increasingly included in the general education classroom.
In our estimation, this could be talking about almost any child, and it certainly wasn’t visionary!
What this showed us was that even after an entire school year had passed, the team still didn’t know Caleb. They still saw him as a collection of deficits and needs, not as an adorable little boy with a unique personality and learning style. It later occurred to me that maybe this was our fault.
Desperate not to make this same mistake again, we turned to the amazing Fragile X community. We turned to the “been there, done that” parents who inspire and inform us. What came out of that was a “Positive Student Profile.” We’d never heard of such a thing before, but we immediately saw the beauty of it. It was our chance to share the real Caleb with people who hadn’t yet met him and therefore had only the IEP, that collection of deficits and needs, to go on.
This year, Caleb’s teacher emailed us a draft Vision Statement and encouraged us to make any edits we wanted. She wrote, “I used the info you sent in the beginning of the year to develop a Vision Statement.” This is what we received:
The team envisions that Caleb will continue to have ample opportunities to observe and learn from peers in a general education setting. He will continue to develop the ability to be flexible and self-regulate utilizing a variety of coping strategies, including those that address his sensory needs. Caleb will continue to be a member of the circle of friends he has gained this school year and continue to help others learn how to be accepting, helpful, and caring friends. He will further develop his literacy and writing skills and understand how to use time, money, and calendar concepts. The team envisions that Caleb will live as independently as possible and continue to learn the skills that will allow him to have a job, volunteer, and contribute within his community.
We signed off on it without any edits.
It’s truly amazing what such a small thing like a Positive Student Profile can do. It immediately made Caleb into a real, multidimensional person, and it provided a gentle nudge to influence how school personnel saw him. What a gift we have in this community, in these Fragile X warrior parents who have fought for their kids over many years, and who now reach out to the newest families to help them struggle a little less.
To assist other families, the NFXF has included several Positive Student Profiles (PSP) as provided by the “been there, done that” parents of the Fragile X community. Thank you Holly and Orah for sharing your PSPs. We hope you can use these great tools.
This form is to be filled out by the parents to provide a “snapshot” of your child. It can also be a helpful form for parents and teachers to use during the IEP process. Parents can update the Positive Student Profile every year and include information from your child’s teachers and therapists. It is important that the profile focus on what your child can do. This will be helpful when setting up new IEP goals. The profile can be included in your child’s IEP as part of his/her educational status. After school the PSP can be adapted for the workforce and employers and co-workers.
Adapted from: Collaborative Teams for Students with Severe Disabilities: Integrating Therapy and Educational Services, Beverly Rainforth, Ph.D., P.T., Jennifer York, Ph.D., P.T., Cathy Macdonald, M.A., C.C.C./S.L.P.