Last week was the first week my legally blind son was back in school since the holidays. It was also the week that the action items in our formal mediation agreement were to be implemented by his high school.
The amount of internal stress I felt about his return to school took me by surprise. My fight-or-flight instinct kicked-in keeping my muscles tense, my breathing shallow, my mind jumpy and making sleep elusive.
My son had attended the mediation meeting and knew exactly what to expect at school. And clearly, during the first week, the team struggled to implement the agreed upon plan. My son was frustrated, and my mind was in hyperdrive: How long do we give them? What is our next step? Who can help? Why are they not complying? What’s next? (The sky is falling!)
One day early last week, my son texted me from school to report that he still didn’t have an accessible version of the AP Government textbook. Another day he asked me to walk him into first block science class to “look at the materials.” I wanted to walk him in. In fact, every cell in my body wanted to walk in and raise HOLY HELL — but, I didn’t.
I knew that I felt off. I felt extra vulnerable, raw and emotional. I explained to my son that he can always count on me for support, but that I needed a few days to process what was happening. I encouraged him to continue to communicate with his teachers and his team, while I documented the issues via email. I also asked him how he felt about giving them a little more time? The first week of new classes with new teachers is stressful for everyone. He agreed, and we decided to adopt a “wait and see” attitude.
While we wait, I assure him that accessible materials are very important and that it’s natural to be frustrated when there is a problem. I assure him that his feelings about late, inaccurate and missing materials are valid and that his right to a Free Appropriate Public Education (FAPE) is protected by federal law. I assure him we will take the next right step when it is clear.
Then I turn my attention back to my own wellness. I speak to my counselor and friends. I swim laps, walk, meditate and cry — a lot. My counselor helps me to realize that the moment I don’t have a clear next step I bump up against grief. When I have an action step, the grief can be pushed aside to complete the task. But when I feel trapped and backed into a corner and I can’t see a clear path, I feel overwhelmed and the grief floods over me.
Today it has been one week since my son returned to school with a mediated agreement. I am researching our next step and we will hold the school accountable. I’m also allowing and encouraging my family to feel all the feels: sadness, anger, self-righteousness, helplessness, injustice…
Personally, I prefer anger over sadness. Anger is easy for me because it’s about something external and it’s actionable. Everything in me wants to react out of anger – I fantasize about throwing myself to the floor, pounding my fists and shouting “It’s too hard! It’s not fair!” Everything about the special education system in Georgia feels broken. Sadness and grief are difficult and cause me physical and mental anxiety. I’m doing my best to allow sadness to have space and an outlet. I’m doing my best to respond to this situation with a clear mind, calm body and deep breaths.
As the parent of a blind child, there is always something new to overcome and accept. However, it’s truly impossible to reach acceptance and move forward without also accepting all the feelings. Once the feelings are expressed my mind feels clear and I can see the next step on the journey. Acceptance also helps me remember that I don’t have complete control over the outcome, over the other people involved, or over the systemic injustice. (Breathe.)
I write this blog as a reminder to resist my urge to react out of anger. I want to be a person who responds thoughtfully, with a clear mind. I want to be a strong ally and advocate for my son.
I’m curious, what is your easy, comfortable go-to emotion over your child’s vision loss?