My Declaration as a Medical Special Needs Parent

by Denie R. Sidney

I wanted to affirm my position as my daughter’s primary caregiver while I was adjusting to home health nursing, dealing with multiple changes in my daughter’s health insurance, and coping with adjustments in staffing at her school. I have good relationships with all of my daughter’s care teams, but this writing was an outlet of expression. Maybe you can identify with this.

young girl sitting in purple adapted stroller

I have a right to SELF-DETERMINATION — I can make choices about what is best for MYSELF, MY CHILD, AND MY FAMILY.

I don’t have to PROVE MY WORTH TO ANYONE. My employment status, the clutter in my home, my physical and mental well-being have all been affected by my child’s health. If you don’t understand, that is your problem.

I have a right to be the AUTHORITY ON MY CHILD’S CARE. I am the common denominator between all 27 of my child’s doctors, therapists, aides, teachers, nurses, and pharmacists.

I have a right to ADVOCATE FOR MY CHILD to receive the best care and best education allowed to her by law and by my standards.

I have a right to DEMAND that you respect my home. My home is sacred space. It is my child’s safe space. DO NOT VIOLATE MY TRUST by going through things that do not involve my child’s care plan.

I ask that you RESPECT ME AS MY CHILD’S PRIMARY CAREGIVER. Prior to our initial encounter, my child and I walked this journey and saw countless social workers and medical professionals. If there was a deficiency in my care routine, I am sure they would have intervened by now.

I have one of the hardest, most sacred, blessed, joyous, and honorable jobs in the universe. I am a parent.


Please honor my position and support me in this challenging, yet rewarding journey.

If you do not wish to honor me, YOU MUST RESPECT ME.

Author: Denie R. Sidney • Date: 6/11/2019

About the Author

Denie Sidney graduated from Washington University in St. Louis with a BA in English Literature and African & African-American Studies. She also obtained her MSW at Washington University. She is a mental health social worker, the proud mom of Mattison, and Marvin’s wife. Mattison has Mosaic Trisomy 9, Partial Trisomy 9 with 9q22.1 deletion and Dandy-Walker Syndrome. ALL 3 diagnoses are considered rare. She became a stay-home mom from 2012-2014 and again in 2015 to the present to care for Mattison and now her husband, who has a degenerative neurological condition. She loves helping others and her passion is mental health support of special needs parents. She is a social worker tried and true, so helping with resources, grants, and special needs advocacy fills her with much joy. 

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