Words are powerful. More powerful than the sharpest knife. Wield them with kindness. Words can tear down parents of children with special needs 1000 times faster and more significantly than parents of neurotypical children. They leave lasting wounds that never fully heal. Never. My mind can forget a LOT of things. These words I am never able to banish from my memory no matter how hard I try are the ones spoken about one of my children with special needs.
Being a mother of 8 children is amazing. Being a mother of children with special needs has been life-changing in the best ways possible. Being a mother is also exhausting, gut-wrenching, earth-shattering, mind-blowingly difficult. The later usually hits me suddenly and shockingly. It usually happens outside of the beautiful bubble fortress we have set up around our home. The later makes me want to run far and fast with all 8 kids in tow somewhere where I can make them safe, happy and appreciated for who they are free of labels and sideways glances.
I am lucky enough to have wonderful friends whose children have a variety of special needs. In our late night discussions, one theme always comes up. All of us feel judged harshly by others. It’s not the strangers at Target that make passing comments or stare too long that bother us. It’s the comments from people we have trusted and loved. I have cried with friends who have recounted their holidays with family, just returned from a girls’ weekend, or after an IEP meeting. They have done the same for me.
Here’s what you should know. We are doing our best. We have poured everything we have into finding the best experts, therapies, doctors, schools. and support we can. We have spent more time then you will ever know reading books, attending conferences, meeting with therapists and doctors, and scouring the internet for other ideas of what we can do. When we rest our heads on our pillows at night, it is not with a feeling of accomplishment and assuredness, but of the feeling that we will live to fight another day. I have never had one day where my mind is at peace knowing I am doing things right since Carsten was born. I live in fear of what boogie man is lurking around the next corner, and what may come up from my past decisions that I will regret. There is a study that shows that mothers of children with special needs have hormone levels similar to soldiers in combat (https://www.bu.edu/fsao/resources/parenting-children-with-special-needs/). I understand this completely. I have lived it thoroughly.
So, if you want to judge parents of children with special needs on what we are doing or not doing, accepting or not accepting, spending hours on or not spending hours on, please pause for a moment. I promise you that we don’t need that kind of “help”. If you think that you know more than they do, stop to think who will be left living with the life long consequences of what you are saying. It’s not you. It is us. We are responsible for our children for the rest of their lives. It does not stop at 18 for us. You are leaving a permanent scar on their psyche. Intended or not, that is what you are doing.
Here are a few things I wish people would never do:
- Don’t diagnosis my kid. I have a whole team of medical professionals I rely on for that.
- Don’t compare my child to any other child even if they have the same diagnosis. I dropped out of that race long ago, and you don’t have the power to drag me back into it.
- Don’t tell me about something that worked for your friend’s neighbor’s kid. If I am not asking, I am not interested.
- Accept my child for who he is, and stop lusting after what you want him to be. Again, that’s a fool’s errand that I refuse to go on, and I wish you would stop chasing that as well.
- While society loves labels, I am not caught up in all of that. I don’t want to join that party. Maybe that’s one of the decisions that will sneak up from behind me and attack, but I will deal with that consequence when it happens.
- I am my children’s advocate. I wear that crown, and I understand the weight that has been placed on me. Heavy lies the head and all. I will die fighting with this crown on.
Some days I am able to walk away from earth-shattering conversations, and think “bless their heart.” Some days I walk away a shell of a human being who continues her day pretending she’s ok. On days like that, I listen to Bruce sing to me “Baby We Were Born to Run.” I come home and propose an idea on how we can run and where we can run to MJ. He never agrees, but one of these days he may, and baby we will run to our utopian world. I’ve spent so many precious hours “building” things in my community to make the world a little better place for my children. Honestly, it is not enough. It never will be. I am exhausted.