Sunday Funday
Some days are harder then others. This is the last day of a long three day weekend with the first real cold weather other the year for us. The twins usually spend a good amount of their time outside which helps with their sensory needs as well as exercise. Without being outside they become restless. Its not even 9am and we have had multiple meltdowns today already over the TV, changing clothes, clothes they wanted to ware needing to be washed. Waiting is not their strong suit, but we are working on it.
I’m going to refer to the twins allot in these blogs as, well, they are the starts of the show. So I think I will use the names Sue and Moo when referring to the twins. I care about keeping their lives semiprivate but I also want to be able to talk about their conditions separately.
Starting at 7am Sue came into the room I sleep in and turned on the TV which is not something we do even on a weekend. Usually we need to get clean clothes, change pullups, and be ready for the days events before we can watch any TV. She wasn’t happy but we made it through with minimal fuss. She is capable of dressing herself with verbal prompting and some help occasionally. Once she was ready I tucked her into a cozy chair with her Troll toys and she was content. Then her sister woke up and the chaos chaosed a little while juggling between the two. Moo was wearing a double layer of bathing suits that got wet in the nighttime and needed washing. While reluctant we talked though it together and I got her to relinquish the dirty clothes. “It’s hard when we can’t wear the clothes we want, I can relate, but this is dirty and we need to wash it before you wear it again” These are the short kinds of conversations I’m practicing with the girls. I have a short threshold for being screamed at. Typically I will try and walk away when I get overwhelmed but that doesn’t help the girls get through their behaviors. I stayed with Moo and tried to put on a show she asked for but she was still fixated on the clothes and it started a tantrum. She went from whining to crying to smacking her face in a matter of seconds and I had to go put her in her room for a calm down. When they are heavily escalated it is hard to get through to them. After she calmed down a bit I got her back into the TV room and gave her a cozy blanket and she picked SpongeBob which caused Sue to get upset because it wasn’t her first choice. I whisked Sue off to the room, away from the stimuli that was upsetting her, and gave her snuggles for a few minutes until she was fine. I should also point out that Sue likes SpongeBob too, she just didn’t want it at that moment. These kinds of things can make it challenging when navigating two nonverbal kiddos at once. They might like the thing you’re offering and just not want it at that time. Being unable to voice that accurately can be incredibly frustrating if you don’t have alternative communication tools on hand at all times. We use several forms of communications with these girls. They have some sign language, visual aids, PEC’s, AAC devices, and even some words when they can focus. There really is so much they can do when their environment is set up for them to succeed. The morning continued with minimal complaints and the crisis was averted. So this morning was an example of maybe a 4 out of 10 on the crazy scale. I think the hardest part of my job as their mom and caregiver is that I’m only one person. There aren’t enough hands for three kids but I make it work somehow. We are ready now to start breakfast!
