You can follow Tracy at her new blog: The Knit Wit Teacher
As teachers we sit in IEP meetings and try to advocate for our students. We gather testing data, grades, classroom observations, behavior reports, and we prepare to face parents. We sit across the table as we face Special Services Departments, Administrators, and parents. Sometimes the parents we face are on the same page as us, other times we are trying to convince parents to take a different path. It's a fine line we walk in IEP meetings. Getting what is best for our students while helping our parents understand why we think that way.
This past week I have been preparing for a different type of IEP. Because today I had an IEP meeting for my daughter. Yes, you read that right. I have a special needs child.
She is my mini-me. She is my only daughter. She is kind, giggly, loves all things girly and has an obsession with clothes and shoes. She is also a child with Aniridia.
Aniridia is a rare eye condition, affecting approximately 1 in 60,000 births. In most cases Aniridia is genetic. Leah's aniridia is sporadic, a genetic fluke.
Leah was diagnosed when she was 4 days old. I will never forget that sinking feeling in my stomach when I was told my baby girl had something wrong. This gut clenching fear that something was wrong and I couldn't fix it. Being asked if blindness ran in my family and almost losing it on the doctor. How could something be wrong with my baby? I couldn't understand it and I was scared to death.
The following months were spent with doctors trying to gauge how bad her Anirida was. Did she have WAGR syndrome or just Aniridia? Was she completely blind or not?
During the past 8 years I have learned how to be a parent of a child with Aniridia. I am still learning what this means for my daughter and her future. How do you tell your daughter she will never be able to drive? How do you prepare her for a future of declining vision? What will I tell her when her peers make fun of her because her eyes look different and they bounce due to her nystagmus? I'm still working that out.
Today Leah has 20/200 vision and is considered legally blind. She has had two eye muscle repair surgeries to help with her nystagmus and she will face more in her future. She has been labeled with social phobia, storm phobia, and extreme anxiety. During school she has been blessed with an AMAZING vision therapist that is with her for 5 1/2 hours a day. She is learning Braille and how to use a cane. Leah is learning to be her own advocate and how to get through her anxiety. And yet....she is truly a special child. She loves reading chapter books. Has a memory that would astound you. She enjoys things just like every other little girl does. Sometimes we forget that something is wrong but then she walks into a beam or door and we are reminded.
Today my husband Nick, (also an elementary teacher), and I sat in Leah's annual IEP meeting. We brought out doctors reports showing her Social Phobia, Storm Phobia and extreme anxiety that is tied-in with her Aniridia. Today we were the parents. We spoke for our daughter and worked out her services for next year. We worked out that Leah would be getting a re-eval to add Other Health Impairment to her record to go along with her Low Vision Label. We discussed ISTEP testing options, Braille instruction through the summer along with special equipment she would need for next year.
At the end of our meeting my heart went out to all the children with IEP's and to the parents of those children. Sitting in on an IEP is a reminder that something is wrong with your child. I ask that every teacher remember that. It's hard being on the other side of the table. Every year I do this and it always makes me want to cry a little. I'm sure most parents of special needs children feel the same way. It's hard hearing that your baby has something wrong with them. My child will always face an uphill battle and that makes me sad.
And yet....I am proud to say she handles it with beauty and grace. She is special, she is ours, and we are humbled by how amazing she truly is.