I don’t want to be that person who attends a big party having left her eldest son at home (a boy who, because of his intense autism, cannot handle the lateness of the evening, the menu, amount of people and general loud and crowded party atmosphere) and has trouble making small talk because all she thinks is, Really? We’re going to comment on the décor of the room or how good (or bad) the food is, or what that person is wearing or how we can’t keep up with the latest fashion or what our kids are doing now?
We’re going to talk about how exhausting your day was and how much time it took to get ready and what your latest career move is, and how your kiddos are spending the summer swimming and attending summer camp, sleeping in and getting on your nerves?
Because I’m becoming that person who has these conversations in a social setting and internally thinks, You kidding me? I had to get the sun and the moon and the stars to align to be able to attend this party because my husband is out of town and my mother, who also cares for my aged grandmother, volunteered to stay home and be with my eldest son while my dad accompanied me and my other two kids to the party.
And I had to school my mom in how to handle my son should he have a meltdown, because now instead of hitting himself on his face over and over, and pinching himself when he gets upset (a nonstop phase of self-injurious behavior that has passed, thank God), now he will head bang against the floor, wall or any hard object if a meltdown happens.
Not that it happens often, thank God, but it does happen.
I had to help my mom spread a plastic sheet on the bed where he would be sleeping, because although he wears a pull-up at night, many nights something leaks and unless the bed is covered, we’ll be scrubbing the mattress in the morning. I reminded her to turn the noise machine on because without background noise, he will get up at the slightest bump in the night.
I had to instruct her on his latest sensory issues, which includes wearing tight under armor long sleeve shirts and stuffing things up his sleeves to make it feel tighter against his skin (let me do it, mom, but make sure to remove all items when he goes to bed. Hide your phones and remotes and hair brushes because they will all go up his sleeves.)
And then my mom and I made sure to feed him before I left so there would be no issues at dinner time. I also had to make sure I gave him his supplements/meds before I left. And I had to make sure I washed him thoroughly because he had gone to the bathroom, and unless I made sure he was clean, that job would fall to my mother, and she doesn’t need to deal with that.
I don’t want to be that special needs parent who thinks about everything that is difficult and can’t see past it to enjoy all that there is to enjoy of life. I don’t want to be that person who can’t appreciate (or at the very least understand) that everyone has something going on, and that a person’s daily living experiences sand problems are very real to him/her.
I don’t want to be that person who cannot let go of what must be done to be able to go out and attend functions, socialize with people and have a good time.
I don’t want to be that person who resents others for the ease they have in life (when behind closed doors, things are probably not easy at all), or that person who cannot share in another’s good fortune because she can’t get past what she and her family may never have.
I don’t want to be that person for whom when a therapist, caregiver or family member has a problem or something good happens (like getting married, having a baby, a job promotion, going back to college, going on a trip) she first thinks about how it’s going to affect the delicately-balanced situation she has set up for her son with autism. I want to be able to cheer my loved ones on or sympathize when needed. I want to be supportive and helpful to others in whatever way possible.
I don’t want to be that person to whom if anyone (who doesn’t have a special needs child) offers some sort of advice or acknowledges with fleeting sympathy that it must be tough, or I must am the best mother, or I am only given by God as much as I can handle — that I come close to losing my cool.
I don’t want to be that person for whom everything is about autism.
But everything is about autism.
And everything isn’t about autism.
So let me say it here. I am trying. I am trying really hard not to be that person. And I am especially so very grateful for friends and family members who don’t have to be in this autism sphere with me, but willingly choose to be and do so in such a deep and meaningful way.
Be patient with me. I’m trying not to be that person. But sometimes I am despite my best intentions. And God willing, most times I won’t be.