There are days I wonder what it would be like to be the parent of only neurotypical kids. To be able to go anywhere without having to worry about remembering sound-cancelling headphones, communication devices, advanced planning on whether there is a suitable place to change your school-aged child’s diaper because they obviously aren’t able to use an infant’s changing table. To not have to scout out any new location you haven’t previously been yet to assess for elopement and safety concerns that need to be addressed beforehand.
For us, wondering about a life like that is the equivalent of wondering what you would spend the money on if you won the lottery or where you would travel if you could go anywhere in the world. That just isn’t ever going to be our reality.
Every person has their struggles to bear with in life and I’m not stupid enough to think anyone else’s grass has less weeds than ours. Some actually have more and I know that. The isolating part that compounds the struggle and loneliness is in the fact our weeds are a unique variety that most don’t have experience with. I don’t know any mom that can’t relate to their toddler acting a fool because you broke their banana when you peeled it or the preteen sass. It’s not difficult to find your ‘village’ in the mamas who can relate to kids not wanting to do their homework, hating to eat everything you cook, or fighting with their siblings. That camaraderie of just knowing you aren’t alone; the chance to laugh some of that stress off with someone who ‘gets it’ is sometimes what gets us through it.
But when there is no one around that gets your struggle? No one to relate to your despair when you have children who continue to eat non-food items that aren’t safe for consumption when left unsupervised? No one who understands that feeling when you can’t have anything hanging on your walls or furniture that isn’t anchored to the wall for safety? When there is no crowd of moms who can say, “Girl, my daughter is so terrified of using public restrooms that she screams and scratches me just to get the hell out of the stalls as fast as she can, too.” We don’t have anyone who laments how it feels to not even be able to go to church together as a family anymore because there is no place for your children to go.
So, so lonely.
Even in a crowd of people, it’s hard not to feel completely alone. The list of how many others can relate to the daily life with low-functioning, severe autism is close to nil, especially in this rural of an area.
The few years that autism has been a part of our life has taken a toll on every single aspect. We are a family and we know that God is good so we work together; we adjust however necessary, and we keep pushing on through the difficult as we hold on desperately to the good. Some days the “good” is just appreciating the way your son finally relaxes into you and lets you hold him after an intense meltdown that left you both hurt and crying.
People tell me I’ve changed and that’s true. I’m not sure if they mean that in a good way or a negative one but I don’t honestly know anyone who could experience life in this way and not have it change them in some way or another.