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How Much? How Little?

Updated: Oct 18, 2021

Each fall, I email my sons’ teachers to give an overview of their Congenital Muscular Dystrophy (CMD). I explain the differences they can expect to see in their abilities, their need to take breaks and rest, and our parental expectation that they try everything. I ask the teachers to inform us of any changes they may see over the course of the school year and any problems in their ability to participate in classroom activities. I invite them to be part of our team. Then, throughout the year I volunteer in their classrooms and establish relationships with their teachers. I participate in PTA and, until recently, co-chaired a committee that organized a major school event. My regular presence at school and starting an open dialogue with teachers has worked for us.

Our success can partly be attributed to the public school district where we live. The leadership has made it plain that they care about creating an inclusive and accessible education for all. A lofty goal to be sure; one that I’m sure isn’t always reached. However our requests for accommodations have always been responded to quickly. A letter from their neurologist to the district nurse is all that is needed to establish a Individual Health Plan (IHP) for our boys. (An IHP is a formal agreement that outlines the student’s medicals needs and a plan for addressing those needs. An IHP is used when needs do not impact student learning.) My regular contact with teachers serves to reinforce the IHP and ensure their needs are being met. We are very fortunate that this process has been fairly easy for us.

Two weeks ago our oldest started high school, and I found myself hesitating to email his teachers. I want Peter to get the accommodations he needs but I also loathe helicopter parents. I was a teacher for 17 years, and I have been on the other side of that table. I decided against emailing his teachers. Instead, we discussed the details of his IHP so he was clear on what allowances he can have. My husband and I told him that we are happy to talk to any of his teachers about his needs but would only do so if he asked us to. Peter agreed to this plan and we felt good giving him this responsibility. High school seemed like a good “practice run” for life after he graduates.

Those in the disability world know that our society has not been created for people who are differently abled. People with disabilities have to ask and sometimes fight for equal access to things that non-disabled people take for granted. Someday my sons may need to advocate for themselves with a professor, an employer, a business owner, a church, or so many other societal systems that don’t consider their unique needs. I know the world will not treat them fairly. I am certain of it. So what can we do to equip our sons for their particular life path?

Maybe these are questions all parents ask as their children grow and become more independent. I don’t have children unaffected by CMD so I don’t have any perspective on that. Though I suspect they do ask these questions, but maybe in different ways.

Sending my children into an unknown world makes me anxious. Have we done enough? Have we given them the tools they need to be an advocate for themselves? At the same time, I know they have already encountered difficult things in their short time on earth which has given them strength and resilience.

Maybe they will be OK?


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