August is Special Needs Parents Appreciation Month. My friend and fellow dedicated mother, Sandra Peoples, founded this 31 day observance in 2015. And while her intentions were noble, there are sadly some in the adult disability community who roll their eyes at this annual observance. They regard such a celebration as public martyrdom and contend that the parents aren’t the ones who are truly living with the difficulties of disability.
I wouldn’t ordinarily even acknowledge mockers. However, my passion dictates that I respectfully push back against such attitudes. Admittedly, most of us parents will never know what it is like to live with the chronic illnesses, rare diseases, and disabilities that our children experience. Nevertheless, we face a unique set of challenges all our own.
What our diagnosed kids may not know
Our parenting journey starts like every parent’s—We just want a bright, happy future for our children. Yet, at some point along the line we face a different reality with child-rearing. Everything we hope and dream for our precious kids is turned upside down. Parenthood suddenly includes becoming a medical expert, an insurance specialist, an education advocate, and a social inclusion planner.
There is little, if any, time for a parent to cry out the trauma and sorrow of facing such daunting tasks. Out of fierce love, we hit the ground running. And along the journey, there are many things we will never hear.
All that you never hear
“Worry weighs a person down; an encouraging word cheers a person up,” so says Proverbs 12:25 (NLT). Parenting a child with special needs can be anything but encouraging and too often seems filled with criticism. Add to that the concerns a mother or father have for the child they love and the weight of it all can be crushing. There are some things that you never hear as a parent raising a child with special needs:
- “Happy Mother’s/Father’s Day” Many, many parents have children who will remain nonverbal for their entire lives. Whether it be from apraxia of speech, severe cognitive impairment, or physical cause, so many mothers and fathers have and will never hear “I love you,” “Happy Birthday!” or other precious sentiments that keep the rest of the world going. They are robbed of that joy that typical parents take for granted.
- “You are doing a phenomenal job as a parent.” – Look, nobody should expect to receive applause for their parenting skills. Still, the condemnation from others can be unspeakably heavy for parents like us. Rather than the seemingly endless barrage of judgment and criticism, it would be nice to receive an “Atta boy” once in awhile to keep us going at times.
- “Thanks for staying up all night with me, Mom.” – We need sleep as much as we need food and water. And the need to make critical decisions for our children with so little of it creates a level of stress that the typical world will never know. While we love our kids, they have no concept of how this pushes us to the edge of the cliff. The demands keep coming and the expectation to be on top of our kids’ well-being is still there whether we have had adequate sleep or not.
- “You are absolutely right.” – This one closely resembles number 2. No one knows their child like a mother or father. Even so, parents are frequently treated by educational and medical personnel in a dismissive and condescending way. We tirelessly fight for the best possible future for our children. It would be nice if those who work FOR us would acknowledge the validity and credibility of our point of view once in awhile.
- “Everything will be okay.” – Parents like us will never hear this phrase used in sincerity, only as a platitude. Because everything may not be okay. Advocacy groups never stop making us feel like our children are about to lose all help, benefits, and rights any day. And frankly, medicine is not an exact science. There is a constant level of trauma that will always, ALWAYS lay beneath the surface for parents like us. Even if our kids live fully independent lives in adulthood, we will always be haunted by the concerns of premature death, displacement, or discrimination.
These represent only a few of the things that you will never hear as the parent of an exceptional child. They are emotional, heavy circumstances that often represent the intersection of deep, uncommon pain with everyday life. Consequently, you SHOULD be celebrated this month, Mom, Dad, or Caregiver. You walk a tough road all your own. Let the eye-rollers roll off of you. God sees your heart, and He is waiting to tell you all you never hear this side of heaven.