One of the things I have learned most acutely through the last seven years is the importance, really, the absolute necessity, of having friends who are also raising kids with special challenges. Doing this alone is empirically impossible- the feelings of loneliness, confusion...the inability to relate to people with neurotypical kids. It's a lot. Consequently, I have been so grateful to have a close friend since we moved to Virginia who GETS it. Who has lived it. Whose son is a little further along than mine at this point and can empathize and insert hope into situations. Tonight, she sent me a text as we have been in the trenches helping our son recover from Covid reminding me that it's normal to be exhausted, that our lived experience is so different from so many others, that I need to hang on but it's ok to have feelings of being alone, overwhelmed and, yes, even hopeless sometimes.
I have her permission to share her words. My dear friend, Kim Rodgers, gives us a small, but very honest glimpse into the world of parenting kids who are outside the mold. I will warn you - these are really raw words. There is no happy, contented words to conclude. Just a glimpse into the challenge. I encourage you, especially if you are NOT a parent to a special needs kid, to read this and seek to empathize. We are a lonely bunch.
"We are in the shadows of life and the world. Just trying to make it through.
We are trying not to compare our now to our friends, family's or neighbor's now. Trying not to be jealous of the routine or lack of. Or the trips they take. Living life on a whim verses planned and rigid- because an unexpected change or shift ruins and hour, a day or even a week. The errands that can be run spontaneously. The "normalcy" of school days without IEPs, 504s and behavior issues.
The friends that a neurotypical family takes for granted the level of normalcy that brings to a child's life- friends that come to play and play for hours. Going to a friends house and playing for house. Snacks that don't have to be planned and monitored. Sleepovers, always having a friend in class, at lunch, in activities.
As opposed to the special needs family that prays every day for someone to just be nice and accept our child for that one day. That they don't get picked on. That they have a nice lunch- maybe even peers that talk to them or include them in whatever nonsense is happening during an elementary, middoe or high school lunch time. That they have ONE friend to play with at recess or that they get picked for a team. That they get an invite to the birthday party, the holiday party.
Our worlds are so different they rarely merge. And the hardest part is as a special needs parent we are so used to trying to hide in the shadows or stay in the shadows because the spotlights that get put on us are never the ones of the starts but the ones of shame, judgment and disgust.
So we bury ourselves. Deep. To protect. To survive. Because we aren't in the light as we try to hide. We are all of the tired. All of the hurt. All of the scared. All of the embarrassed. All of the pain. And all of the worry."
Thanks, Kim, for your honesty. And for always, always reminding me we are not alone.