If you ever listen to The Fringy Bit podcast, you already know that I receive the brunt of the challenging behaviors from our beloved KBear. She has literally told me she stores it all up for me. This is not fun for me. Much of my time with my daughter is spent helping her regulate, managing meltdowns, breathing deeply to keep myself from responding to her attitude. I want to have time with the joyous, thoughtful, hilarious, quick-witted, inquisitive, playful person that my daughter truly is. And, truth be told, there are many days I throw my own little pity party that I don’t get to see more of that side of her.
Last week I had succumbed to that mindset. Why doesn’t Jon have to deal with this? Why can’t I just get to play and spend joyful time with my daughter? Why does she store all her ickiness up for me? I don’t want to deal with it anymore! These were the thoughts that were raging through my brain as I was, once again, managing behavior and emotions for the entire evening.
My favorite time with KBear is bedtime. No. Not the time when I’m trying to guide (umm . . . force) her into her bed. That time is generally hell. The time after she’s tucked under her weighted blanket, pseudo therapy dog by her side, fringy bit in her fingers, essential oils diffusing through the room, and I am laying next to her in her bed. It is during this time that she actually wants me to physically snuggle her. Sometimes that snuggling simply looks like me laying next to her without touching her. Lately, more often, it’s been looking like her reaching back to hold my hand or gently move my hand around her waist while we spoon. I cannot tell you how much these seemingly mundane gestures mean to me and still make my eyes puddle.
During this time we usually watch 20 minutes of a movie together. A movie that she reserves for just the 2 of us. Sometimes we chat. If she isn’t too tired, this is always a time when she’s capable of reflection and helpful communication. Last week, I used this time to chat.
“Kbear? What can we do about our time together? I’m really sad and tired that you always act so mean toward me. I’m really tired with how mean you are toward Chimp. What can we do?”
No response from KBear.
“Seriously, KBear why does it go this way?” (I was still a bit activated, so my line of questioning wasn’t quite as non-judgmental as I usually try to be).
“I don’t know. I just save it all up for you.”
“But, can we find ways to not save it all up. Because this kinda sucks.”
“But you know how to deal with it.”
“Yes, but I’m getting tired of dealing with it. I love you, but this is getting old.” (Again, not my worst and not my finest hour of communication with her.)
“Mom. You have no idea how hard it is to have epilepsy.”
Clarification here: She forgets the word autism, and calls it epilepsy. And epilepsy is far easier than sensory processing disorder or developmental dyspraxia! So, when she says epilepsy, she’s referring to all of her wiring.
My shoulders drop. My breathe escapes me. “No. No, Kbear, I have no idea. And you’re right, I forget sometimes.”
It becomes so easy to get wrapped up in how difficult this life is for me, for my husband, for my boys. It becomes so easy to get caught up in the financial difficulties, the physical difficulties, the emotional strain. It becomes so easy to forget that my difficulties pale in comparison to the difficulties of my baby girl. And, some days, I think to myself that I won’t be able to make it through the next 10+ years that she’ll be living with us. But, KBear isn’t so lucky. She doesn’t even have an end point. She will be facing the difficulties for the rest of her life. And it is easy for me to forget that. Yes, the difficulties will change and she’ll mature and learn new and better ways to manage them, but she doesn’t have a countdown until the symptoms and challenges move out of her home.
I am so very thankful for the reminder my KBear gave me, and the reminders she will give me in the future. Yes, it’s hard. Yes, we as parents need extra support. But, when I can remember that this is even more difficult for my child, our family can support each other in far better ways.