The Anonymous Hate Mail I Received for Being a Mom to a Child With a Disability

I received my first piece of “anonymous hate mail” this week. It was mailed to my personal home with no return address and no signature.

The letter read:

Erin, it must be so nice to have so much free childcare. We are all envious of you. Your mom and childserve afford you free time to have time to yourself or hang out with friends. We get that Abe requires a lot of time. But, we too would love free childcare and medical care. We do not think you realize how lucky you are. Just because Abe had behaviors, does not mean you are entitled to so much. Stop bitching and do something.

Dear Anonymous “We,”

First, I do not look at this letter as a personal attack on me, despite the fact that you definitely intended it to be hurtful. I am looking at this as an attack on the collective “we” of the parenting community of kids with disabilities, and we are mighty.

Your letter is a prime example of not only what is wrong with humanity, but also an example of the numerous assumptions and misconceptions about what people with disabilities are, in fact, entitled to. So please let me enlighten you.

That “free healthcare” and “free childcare” that you claim to be so envious of comes at a hefty cost. Did you know that individuals with disabilities in Iowa are entitled to what is called the Medicaid Waiver Program? Abram qualifies for three of the five waivers that Iowa offers to children, including the Health and Disability waiver, the Intellectual Disability waiver and the Brain Injury waiver.

According to the Department of Human Services, the Medicaid Waiver Program provides, “service funding and individualized supports to maintain eligible persons in their own homes who would otherwise require care in a medical institution.”

When you state that “We are all envious of you,” I have to admit I am taken aback by such cruelty and ignorance. Envious? My son was determined to be disabled by the state of Iowa before his first birthday. He is diagnosed with a brain injury and has a diagnosis of an intellectual disability on top of his rare genetic disorder. Abram was diagnosed with UBE2A deficiency syndrome, which has caused numerous other health care issues, including brain abnormalities, kidney abnormalities and the inability to speak.

To clarify, yes my son is entitled to his “free healthcare.” Abram’s complex medical history is far more than the “bad behaviors” you commented on, which tell me you know a little bit about my life (most likely from the outside looking in) but also are totally clueless on Abram’s overall diagnosis which has, unfortunately, brought on significant health and medical issues.

The lack of empathy, ignorance and cruelty astound me.

Those “bad behaviors” you nonchalantly mention require daily medication to help him. At school, he requires two 1:1 staff members during his school day and a highly trained autism team that the school district put into place to help my son be safe. It has been a victory that Abram can tolerate one or two minutes sitting in the classroom.

That “free childcare” you mention is actually part of the Medicaid Waiver Program to prevent primary caregivers from burning out and keeping children like my son out of the system.

That “free childcare” is actually called “respite” and “supported community living.” Your feeble attempt at shaming me for taking some time to myself while my son is with a respite or SCL worker will not work. If the federal government thinks I am entitled to small amount of help every now and then, by all means, I am going to take advantage of that. I am never going to let some collective “we” behind an anonymous letter make feel guilty for that.

For the record, in six and a half years, I’ve only spent three nights away from my son. All the “free time” you think I “have to myself or to hang out with with friends” is grossly misrepresented. I am a good mother, I work hard to give Abram all the things that he is entitled to and I deserve time to recharge so I can continue to kick ass and be the mom that Abram deserves.

Despite the fact that Abram has life-long, life-altering diagnoses, I most definitely am aware of how “lucky” I am, but not in the way that you’d think.

Despite our challenges, Abram is the best thing that has ever happened to me. He has taught me so much about life, love, relationships and patience. He’s also taught me about forgiveness, living life to the fullest and doing my best to stay positive and put kindness out into the world.

“Stop bitching and do something,” you said… perhaps you should take your own advice. I’ve advocated non-stop since the day my son was born to ensure that he got the services that he is entitled to. I spend nearly all of my personal time with other moms like me, running two support groups for families of kids with disabilities and advocating for all Iowans to have access to medical cannabis.

Your letter was right about one thing: I am unbelievable “lucky.” I have an excellent support system, have a community who loves and adores my son, a school district and school staff that go above and beyond to help him and an army of friends and family who have my back. It is pretty incredible to have so much support and love from my city and my tribe. Thank you for reminding me of that.