![]() "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.
9 Comments
Susan Clarke(Kleyn-Molekamp)
11/20/2013 02:02:42 am
I just want to say I think you are all wonderful .. you and Alex and Grace and, yes, Kate. I can't comprehend the frustration she must feel at times! I know we all have frustrations but ...
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Grama
11/20/2013 03:21:44 am
I hope to be around at least another 15 years, so the babysitter position is "FILLED". XOX Grama
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Emily
11/20/2013 10:59:11 am
Oh my gosh, YES! One person very close to our family (not saying who) related a story of a family she knew that just refused to give their child what the child wanted, until the kid said the actual word. I then understood the term "seeing red" in a very literal way. That was a few years ago, when Isabel was only 3 and we were thrilled that she was able to communicate her needs with gestures. Just recently someone nicely informed me that it's not helpful for me to constantly interpret Isabel's words. I contained myself but I wanted to say "If I didn't interpret, you would never give Isabel the damn book she's been asking for for the last 15 minutes." I wish people would have some empathy--imagine going to a foreign country and knowing only your own language. And instead of anyone trying to help you or understand you, they refuse to give you anything you want or need until you started speaking their language perfectly. How frustrated would you be? How quickly would you give up?
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CBlondie
1/14/2014 07:09:34 pm
This post reminds me of a conversation I was having to other day about how far one of the children I babysit (who has down syndrome) has come. He was sitting in front of the tv with me watching the news and playing with his IPad, and I had one of those moments where I realised just how far he had come. Anyone who didn't know him would see a child sitting in front of two screens and would probably not have approved. I saw a boy who had gone from watching an old hi five disk that was so scratched we had to watch the first half over and over because that was all that worked, while tying knota in a piece of string for hours on end, to a child that was happy to watch a variety of things (though he still has his favourites which he will tend to pick first) and who is now able to navigate around his IPad by himself, and use it to play games, or watch the news or kids shows, or listen to music. He knows how to choose songs and adjust the volume (even if he is still getting the hang of having it quiet!) and will dance along too! It is amazing how you learn to appreciate all of these little things, and realise how big they really are!
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jennifer
1/15/2014 09:14:24 am
I have to say it is very sweet to read how your older daughter tried her best to help her little sister. :)
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Rebekah
1/15/2014 06:28:58 pm
I loved this! Quite a few people don't get that this goes for adults with Aspergers, as well.
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Celeste
1/16/2014 01:25:40 am
THANK YOU for this... I am constantly getting questions as to why I don't ever get a sitter, and offers to help.... along with strange looks when I say no, we just do things that are family oriented. But you're right. The average person is not going to be able to predict the way my wonderful, amazing, AWESOME autistic child's mind is going to work in any given circumstance, let alone understand what he is trying to communicate with very few words, or what to do when he knows he isn't being understood and reacts!
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Shannon
1/17/2014 01:36:38 am
I stumbled across your blog via the post that went viral about your recent airplane ride with Kate. This post specifically speaks directly to me! My 4 year old is exactly the same when waking in the morning and right after school. He finds obscure videos of toy demonstrations on youtube and watches them over and over. I am the only one that knows what he is asking for! It gets so very exhausting but man, I just adore my special little guy and the way his brain works. He amazes me daily. I am so happy I found your blog! Keep it up!!
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