I've gone back and forth on whether posting this was the "right" thing to do. However, I try to look at all things in this life whether they are positive or negative as a teachable moment.
I received my first piece of "anonymous hate mail" this week. You can read the letter below first and read my response beneath the image. This was mailed to my personal home with no return address and no signature.
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 special needs community 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 in fact 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 his brain abnormalities, kidney abnormalities and the inability to speak. Envious?!
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 been a consistent burden his entire life. The lack of empathy, ignorance and cruelty astound me.
Those "bad behaviors" you nonchalantly mention indeed are still in full force and require numerous medications daily to keep under control. At school he requires two 1:1 staff members during his school day and a highly trained and educated Autism Team that the School District put into place to help my son NOT smash his face into the walls, the floors or hurt his friends at school. It has been a VICTORY that Abram can sit for 1-2 minutes in the classroom. Think about that for a second. Envious??
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. If you are so envious, perhaps you should look into all of the numerous children with special needs you could adopt or foster. Not only would it improve your outlook on the world and change your life immensely for the best, it comes with all these "benefits" you claim to be so envious of.
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 that I am entitled to small amount of help so that I can have a tiny semblance of a "normal" life every now an 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 6.5 years I've only spent three nights away from my son. All the "free time" you think I am afforded to "have to myself or to hang out with with friends" is grossly misrepresented. My idea of a good time is going to someone else's house instead of sitting in my own home. 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 (even as an adult, he will still cognitively be a young child), I most definitely am aware of how lucky I am but not in the way that you'd think.
Despite our hardships, 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.
The letter ended with "Stop bitching and do something". I'd say 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 in fact entitled to. I spend nearly all of my personal time every single day helping other people whether that be other special needs moms, running two support groups for special needs families and advocating for ALL Iowans to have access to medical cannabis.
Your letter was right about one thing: I am unbelievably 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.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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