An open letter from parents of students with Special Needs

posted in: Heart-Advocacy 0

Dear Decision Makers in Special Education:

We need you right now. We need you to realize that the center of the IEP/504 meeting is not a profit/loss statement, not a spreadsheet to collect two more weeks of data to justify services we needed last quarter, and certainly not a power struggle. We get it, we are in a pandemic, and everyone is struggling. Grace was given the last quarter of last year, and it is still given, but it is now engulfed with a desperate plea for help. We get you are overworked, but so are we.

We are overworked and worried. Worried that our child is regressing so far back that we will not be able to recuperate the progress they were making in the upcoming years. We are the parents who cried when our child could sustain attention for 5 minutes, when they learned to read in the 6th grade, when they were able to sign their name, when they held a spoon and fed themselves, stopped hitting others when they didn’t know how to express themselves, or made a friend. There is so much more to school than academics. The academics hurt but the isolation is causing life skill deficits. We all have vastly different needs, individual ones if you will.

The individualized education plans (IEPS) that you look at as your daily grind took blood, sweat and tears. We processed through a diagnois, then accepted the need for help, fought like hell for that help, and now we feel it slipping away. If you have a child with high needs, daily life is no picnic. It is loud and exhausting and wonderful, but not easy. The reprieve when that child is at school or therapies recharges us to get up and change our 14 year old’s diaper, mitigate epic meltdowns if someone puts blueberries in the pancakes, work on basic math for hours on end to have it all forgotten the next day…and the list of individual needs goes on. We need the village we have taken years to set up, and that includes you. Not spreadsheets of data or regurgitated policies. We need outside of the box thinking, we need help.

We cannot be a scribe, therapist, keep our kids on a zoom call and do all the things that keep the delicate balance of our lives going all while working to pay for the services/medical expenses our kids entail. Help us. Please. When we request a 504/IEP meeting, do not think of it as an annoyance. Think of it as an opportunity to help a CHILD. A child who is struggling and needs you, just as we do. No matter the modality-in person or online-we can do more. If you are writing a policy, please remember why you chose this field. When we meet, we will bring that grace & gratitude to the ZOOM table right along with you. It is not us vs you, it is both of us for them.