"I wake up, I wake up, I wake up, I wake up, I wake up......?" The early morning request will go on and on until one of us goes into her room and helps her down from her safety-gated bed. On the weekend, I was especially tired and I think I let the perseveration go on a little longer than I usually would. We try calling out to her from our room. "Just a minute, Kate." It never works. Her brain gets stuck. On this particular Saturday I heard Grace crawl out of bed and run loudly into Kate's room the way little children run, with their feet pounding on the floor making them sound deceivingly heavy and brutish.
Grace: Good Morning, Katie. Do you want me to get you out of bed?
Kate: (Confused but intrigued) I wake up, Gwace?
Grace: Come here baby, Gracie will take you to the couch to cuddle.
Kate: Cozy, cozy?
Grace: Let's go get Cozy, cozy.
I listen intently as Grace helps Kate delicately out of her bed. Kate's feet hit the ground much like Grace's. Four little feet make for the living room shaking the whole house and I lay there for a few minutes enjoying a luxury we haven't had in almost six years. And then I hear it. Kate is asking for something. Grace is trying to figure it out.
Kate: I wanna Spuna pwaydo, Gwace.
Grace: Do you want to play turtles, Kate?
Kate: (Screaming this time, because her patience is non-existent when she isn't quite awake) SPUNA PWAYDO!
Grace: Playdough? You want playdough, Kate? I will get it.
Kate: (Completely unintelligible now because she is so beside herself. She does NOT want playdough.) SPUNA PWAYDO!!!!!
I know I have to get up now because Grace could be in the path of a Kate tornado. Kate is frustrated and she is about to lash out. I jump out of bed and I know immediately that Kate is asking for a random video on youtube that is a toy review of a SpongeBob Playdough kit. She loves it and watches it over and over. I know this and Alex knows this but Grace does not. Grace doesn't have to worry herself about what Kate perseverates on. Grace tried her best to help. This simple early morning interaction is just one more reason why we cannot take you up on your kind offers to babysit. Communication is very difficult for Kate and her frustration level peaks when she is asking for a comforting item (like this video) and the person cannot provide it. There are a number of people on the 'list' that can watch Kate. These people spend enough time with her and can usually decode her when necessary. You know who you are. There are a few of you that have yet to lay eyes on Kate that could handle her tomorrow. You've been where we are.
If you feel like telling me that I should make Kate wait, or put her in time out or take the video away until she learns to ask for it properly, you are reading the wrong blog. Autism does not allow for that in our case. We have hope that these skills can be learned but we are not there yet. We are still in stage I like to call 'Damage Control.' If Kate goes off, we try and deescalate the situation without completely giving in or setting her off. We ask for manners and we ask for the vocabulary needed to request the item but we don't expect Kate to fully manage her expectations at this point. If you think you could do better....let me be the first to tell you....you couldn't. Kate would own you and I would get a kick out of that. You wouldn't be the first that has tried and you won't be the last.
I got Kate settled and hugged Grace and thanked her for being so helpful. It is a brave thing to get between Kate and what she is looking for. I should know.
Just in case you are worried. Kate settled in with her video while Grace cuddled beside her. I didn't dare go back to bed. I poured some coffee and settled down next to them until I heard another desperate cry:
"I WANNA MASSER SWINTER!!" (I want Master Splinter) This one Grace could manage and she quickly got her sister settled back down watching a Ninja Turtle video.
Don't get me wrong. We are not slaves to Kate's demands. She more often plays with her toys happily, although rambunctiously, and can entertain herself for long periods of time. When she feels overwhelmed (first thing in the morning or directly after daycare) she often requests time with a preferred video. Relax, we limit it. She sees that iPad less than one hour a day. I've done the research and that is perfectly appropriate. We don't mind giving her this time to decompress because we all do it too.
Communication deficits and a lack of patience can be a pretty brutal combination. We are learning to manage and so is Kate.
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)