Advocacy Without Apology

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Eddie walking on the street using his long white cane with his back to the camera

As a parent of a child who is blind with additional disabilities, I feel like apologizing a lot. I’m telling strangers "I’m sorry" because my son might touch them or their things in passing. I might apologize if he calls out or sings loudly in quiet settings. I might even apologize to family and friends when we can’t attend events because sometimes it’s just too hard.

At school, I feel like apologizing because he might disrupt class. I feel bad that his behavior is sometimes hard to manage. I even want to apologize to the community because his education is expensive. The urge to apologize for Eddie is strong... and the feeling is frequent.

However, when I really think about it, that urge and feeling are insane. Do other parents find themselves apologizing for their kids all the time? Do they have to feel bad about needing extra support at school, at home, and in general? How many others think about their kids’ needs and feel the urge to apologize for that cost? The answer, almost none.

Our son is challenging. He struggles with finding the words he needs to communicate. He requires extra time to complete any task. His outbursts are due to misunderstanding and anxiety. When we share our own frustration with Eddie, we hear a quiet, tearful "I’m sorry." I silently cry myself then wonder, "Does he often feel the urge to apologize too?"

Our son’s health care costs a lot. He entered this world on two policies; one private and one provided by the state. He is still dually covered in that way. His medication out-of-pocket would be $3,000 a month without that coverage. He has a preexisting condition. I will not apologize for the cost of his health care and the aide we require.

Our son’s education costs a lot. Learning to read for him means learning braille. He may not read "Moby Dick," but I would like him to read signs, labels, lists, and the steps to complete a task. Braille literacy is crucial for any employment when it comes to individuals who are blind. I will not apologize for that.

As parents, I think "I’m sorry" bubbles to the surface too often. Personally, I feel the weight of our son’s needs every day, and that weight can sometimes be suffocating. If I feel the weight, I know others feel it too, and I feel the urge to apologize for that. Honestly, I don’t want to anymore.

His needs are not negotiable. I’m not sitting at home creating an arbitrary list of demands, wants, and hopes. My demands, wants, and hopes are founded in medical reports, evaluation, research, and expectations. I will not apologize for his needs or for my advocacy.

My new motto is "Advocacy Without Apology," and I hope those of you reading this blog embrace it for your own kids too. Most people I know will read this and think, "Right on!" You are my people. Thank you for advocating for Eddie.

Resources to Help You Advocate for Your Visually Impaired Child

Know Your Rights As the Parent of a Blind or Visually Impaired Child

Being an Advocate for Your Child

What If My Child Has Not Been Assigned a Teacher of Students with Visual Impairments?

When You Have Concerns: Problem-Solving with Your Blind Child's School

Topic:
Autism Spectrum Disorders