Here is a blog post I wrote about Maya having tantrums which I refer to as “feeling tornadoes”. It offer insight into what we see, what Maya feels, and how we help her move beyond them.
Control Your Reactions-Avoiding meltdowns so your children can too-This is a wonderful article. We all have our moments but sometimes we can easily slip into patterns of having shouting matches with our children among other emotional reactions. This is a great guide to taking stock of some of your parent/child dynamics and offering input on how to make some adjustments.
Please Don’t Help My Kids-I enjoyed the following editorial piece. It was written for kids without disabilities but I see the value in applying parts of it to our children with CP and other disabilities. So often we feel compelled by guilt or habit to step in and assist our children with activities they may be able to successfully navigate themselves given additional time or perhaps with only subtle hints.
Using prompts, clues and/or cues for supporting individual learning about putting information together and/or priming the nervous system for what comes next, are very useful tools. They have proven invaluable for Maya. The following blog post from Friendship Circle of Michigan discusses using various types of prompts with individuals who have special needs. We have used prompts to help Maya her frame her experiences, prepare her nervous system for schedule changes, transitions at school, facilitating academic learning, and more! Here is the post: A Guide to using prompts to facilitate learning by Friendship Circle of Michigan
New! The following is an article about a fantastic app to support communication during a panic attack or other high intensity feeling period when the stress of verbal communication is too taxing: http://www.upworthy.com/no-one-knew-how-to-help-him-during-a-panic-attack-so-this-autistic-man-made-an-app-to-tell-them?c=ufb1
A Facebook post from 2-14-14:
A little laugh for you under the theme:
Accepting changes in routine/plans-
This has been a tough one to help Maya work through. We have been at it consistently for several years now and she is gaining more awareness and self-control over her emotions when their are changes in her routine or plans. We had to get to know Maya’s nervous system rhythms and personality to begin to move forward in helping her gain more self-control when her schedule changes.
For instance, her dad promised to take her on the swing this afternoon but it turns out it’s too icy. It’s certainly disappointing, especially for a young girl who is limited in what activities she can do. However, this may have sent her over the edge a couple of years ago, and in a way that turned into extended screaming and crying for more than a half an hour. After her dad shouted from the other room that it was too icy her face dropped, turned red, and I immediately told her, “Wow, that is so disappointing.” “Maybe we can think of something else fun to do”.
If I catch and redirect her before she starts to go over the edge, she has a much better chance of maintaining some control over her emotions. This has taken lots of practice. Her dad asked her about doing something else like playing Bingo and she didn’t answer him. He said, “Hello?” Why, are you still not answering me?”. I told him she was processing. She stayed silent for about 5 more minutes and then she said excitedly “I POCESSED (without the R) and yes, I want to play Bingo with you dad!”.
Oh, how that made us laugh. She was so thrilled about her success in moving through those feelings and of course we were as well. She is learning and so are we…
Managing Feelings in the Absence of Regular Physical Release-Facebook post from 7/25
Why didn’t it dawn on me that part of Maya’s difficulty with managing her feelings is her lack of daily physical release?!!!
I have been thinking a lot about the post I shared the other day on tantrums/feeling tornadoes. Many parents have been sharing with me that they too are experiencing this with their children, and well beyond the typical tantrum years. One thing that occurred to me is the potential for kids and adults with physical limitations to have “emotional build-up” related to less opportunities for physical release. This would be particularly true for some kids and adults with CP, who like Maya, have difficulty executing movement in all four limbs.
Our bodies are also designed to generate positive and protective biochemicals through movement/exercise. So what happens when our kids (and adults) aren’t moving? We build up emotional waste in our bodies just like we do other types of waste that our bodies have been intended to release. Our kids have to find a way to cope and release that energy. Screaming is not a bad idea when I look it at it from this perspective! It’s a coping mechanism in the absence of other readily available alternatives that aren’t working well enough for Maya.
So, I am adding this information and perspective to our thinking, and I intend to sit with Maya and ask her what kinds of ideas/opinions she may have about ways of moving, exercising, etc. that will help her release her feelings. Perhaps over time she may develop a conscious relationship with an activity helps her move tough feelings out of her body before she feels like she will implode or explode.
“Perseveration is the uncontrolled repetition or continuation of a response (e.g., behavior, word, thought, activity, strategy, or emotion) in the absence of an ongoing occasion or rationale for that behavior or emotion (e.g., the topic or task requirements have changed).”
A few weeks ago I shared a story about Maya repeatedly watching the movie Annie. It led to some very interesting comments and observations parents and adults who have CP have made about perseveration. For Maya, I have observed that she is comforted by some repetitive activities such as this one, but other times she repeats phrases or ideas and I cannot figure out why she may be doing it. We have also seen perseveration with emotion which becomes uncomfortable and frustrating for her (and us). We have all worked very hard to help her move through these places of feeling stuck and having some insight about what is happening would have been very helpful.
We have so much to research and understand about developmental brain injuries (if you remember this is the name of my proposed new framework for discussing CP). For now, when there is a knowledge gap for CP I often look for clues from our related communities conducting robust brain research such as TBI/acquired brain injury and Autism.
I thought this piece on perseveration from the Brain Injury Association of New York was particularly helpful in offering some insight on the topic of perseveration.