To the Educators Who Work With our Children: A Letter From All of Us
By: Rachel Levine Nemhauser
Tags: Education, Parenthood, Schools, Disability, Autism

To the educators who work with our children,

We are the mothers, fathers and guardians of your students with disabilities.

We are the parents of children attending your school who have IEPs, 504s, and behavior plans. Young people with nursing assistants or one-on-one educational support, with door to door transportation and specially designed instruction. The children with challenging or dangerous behaviors, social barriers, complex learning needs, or severe, life-threatening medical conditions.

We are the parents who are not-always-so-gracefully learning our way through the IEP process and the special education system, and trying to remember the difference between SDI and PLoP.

We are the moms and dads who sit across the table from you at annual meetings, often grateful, occasionally angry and sometimes crying, and who have been known to send an email conveying frustration when what we’re really feeling is confusion or fear.

We are the moms and dads whose stomachs drop every time the phone rings during a school day because we’re not sure we want to hear what the person on the other end has to say. We’re the parents whose children come home after school and are unable to tell us if they had a good day because they lack the verbal skills to do so. We are the parents who once every three years are required to hear how behind our children are in every area of their learning and development in order to continue to qualify for special education services. It can be excruciating, but we do it because our children are beyond worth it and there is nothing we wouldn’t do for them.

We’re the parents whose children aren’t always invited to birthday parties or included in after-school activities, so we don’t have a chance to meet with and get to know the other parents in our neighborhood. We’re sometimes severely isolated, and we’re not always getting the support we need in other areas of our lives. Some of us are still working through the grief or shame that often accompanies the birth of a child with a disability, and some of us are burning with an undying pride or simmering with the solemn responsibility to protect and care for the treasure we were handed. We definitely and irrefutably don’t want your sympathy, but we do wholeheartedly appreciate your compassion and understanding while we do our best to advocate for our sons and daughters.

And speaking of advocacy, if it’s not easily apparent, some of us very much enjoy the engagement and advocacy required of us as parents of children receiving special education services, and some of us…don’t. Some of us feel empowered by the process and some of us feel intimidated, overwhelmed and lost. Some of us commit to learning all the complexities of the law, some of us don’t have the bandwidth or English language skills to do so, and some of us have other ways we prefer to show up for our children. Some of us even have our own personal issues, mental health conditions and intellectual disabilities that are variables when we support our kids.

Our children’s needs are diverse and individualized, and in so many ways ours are too. However, the powerful love we feel for our children is universally consuming, and their education, safety and well-being are our shared priorities.

With the new school year starting, it’s probably not surprising to hear that our anxiety, fear, and level of worry might rise. New teacher, new rules, new bus driver, new peers, new fellow-parents…it all thrashes on a spin cycle through our brains, so that by the time the first day arrives we are jittery and emotional and desperate for affirmation that things are going to be OK.

For those of us sending our medically fragile or non-verbal children to your care, the amount of trust this requires might be too huge to measure. We feel a weighty, oppressive fear that they’ll get lost, or be harmed, or have needs they can’t get met, and it’s terrifying. It’s more than terrifying, if we’re being honest. It’s like leaving a chunk of your liver laying on the sidewalk across town, and having no choice but to rely on everyone’s promise that they’ll protect it. It’s one step up from impossible, really.

For many of us, and perhaps especially for those sending our children who exhibit violent and aggressive behavior, our concern is that those in charge will never look through the difficulties to find the awesome, unique and valued child underneath. We lay awake at night aching with worry that our children’s teachers won’t see their potential gifts, and their peers will never look past the unusual behavior, non-verbal communication, medical equipment and physical differences, to see a potential friend. The fear of watching our children be misunderstood, unseen or ignored is a different kind of terror, but it is no less real.

We know that almost everyone who works with our children — the teachers, para-educators, therapists and administrators — are doing so because they want to, and because they care. We know that you work hard, you are highly skilled, and that you bring vital gifts, expertise and insight to our children’s education. You have given us hope, and given our children the skills they need for independence, and we can never adequately express what that means to us. We also know you’re possibly overworked and underappreciated, and might not have access to all the support and resources you need to do the best version of your job. We see your devotion and your heart, and we feel the love in what you do. Our children are so fortunate to spend their days, and to learn and grow, in your care.

Occasionally we run into an educator who makes it clear they don’t see or understand the value in our children. They tell us how they feel with their unwillingness to try, to be creative, to be flexible, or to be open-minded while one of our kids struggles or fails to be included. They tell us with the language they use: words like ‘abnormal’, ‘dependent’, ‘low-functioning’ and ‘incapable’. They tell us with their lack of effort at understanding what it’s like to be a person with a disability, or to be their parent, and by their lack of interest in what matters to the person whose education we’re discussing. They tell us by hiding behind policy, budgets, rules and procedures, and with their unwillingness to invest in the future of our children.

Those are the exceptions though, and we know that. We know that in almost all cases our children are surrounded by professional who take the time to know their dreams, their plans, their fears and their gifts. Professionals with the expertise our kids need to thrive. We may quibble over the minutes in our service matrix, argue over the one-on-one para request, or strongly disagree over the best type of learning environment for our children, but we know you sincerely want the same things for our children that we do, and that matters. We also fully recognize that when it comes to our children, we can be emotional, reactive, demanding, overly persistent and sometimes even a (tiny) bit unreasonable. We ask for your patience because sometimes when our children’s well-being is in question, no matter how hard we try, being levelheaded isn’t possible.

Thank you for listening, and for taking the time to understand what it feels like to sit on the other side of the table. When we collaborate, trust and respect each other, anything is possible.

Sincerely,

The parents of the children you educate