To the Woman at the Pharmacy Who Said My Son Was 'Not Special Needs'

Today, while out running errands, I overheard a mom at the pharmacy counter talking to the pharmacist about a group of moms who have children with special needs who meet once a month to relax and unwind. She was asking the pharmacist if she would be allowed to place flyers at the counter. In the midst of the conversation, the pharmacist saw me and mentioned that I may be someone this mom would want to talk to. Yes, the pharmacists at Giant Food know our entire family by name and they are wonderful!

The woman came over to me and we began talking. I explained to her who I am and who Johnny is and what his diagnoses are. I asked her if she could let me know the next time there was a meet-up of this group because I would love to go. She proceeded to ask me how my son was considered to have “special needs.” Slightly thrown off by this question, I explained what maple syrup urine disease (MSUD) and cystic fibrosis (CF) were. Her response floored me: “I don’t believe you would fit into this group. He’s not ‘special needs.’ He doesn’t have therapies or interventions. He just has some medical needs.” Unsure how to respond to this, I took a minute to let the words form in my head before opening my mouth. The wheels were spinning in my head and my eyes filled with tears. How to explain this. How?

As it turns out my response was very simple: Not all special needs are those you can see. Some special needs are invisible. You cannot see them. You may never see them. No, my son does not have visible disabilities. No, we don’t treat him as though he is “disabled.” In fact, I detest labels in general. But, nonetheless, I promise you, he’s special. No, he does not require special equipment other than his nebulizer. No, we do not need a handicapped sticker on our car. Yes, he is developing as many other 1-year-olds do. Yes, he will have either an IEP or a 504 plan when he gets to school. He requires more help than some children might, and less than others. Who are you to say my child does not fit your criteria of “special needs”?

For someone else to judge him and I and say I am not “allowed” in this group was heart-wrenching. With a bitter “goodbye,” I decided this group is not for me. I feel anyone who thinks they can judge another parent and their child does not deserve my time or energy. I hope this fellow mom now understands that there are such things called “invisible illnesses,” and I hope she never passes judgment on another family again.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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