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Teasing apart and making sense of the behavior of a child with multiple medical issues is often difficult for parents. Sometimes, my husband and I struggle while trying to determine if Maya’s behavior is typical of children or is influenced by pain, sleep deprivation, epilepsy medication side effects, frustration with her limitations, food sensitivities, or personality. Because it is tough to figure out which factors or combination of factors is at play, it can be tough to figure out how to help her. Over time, as we learn more about her and how she processes what she feels, we are getting more confident in our parenting.

Most of the time, Maya is very intuitive, self-aware and able to clearly articulate how she feels both emotionally and physically. This may be due partly to how much time she spends thinking and using her imagination when her physical disability prevents her from being active. At times, though, she gets overwhelmed with her feelings and exhibits incredible periods of emotional intensity and raw “feeling tornadoes” (as I like to think about them). This is when she gets stuck in her emotions and appears to dig her heels into the last thing that set her off. She will yell and sometimes scream very loudly for extended periods of time. During these tantrums she refuses to engage in any conversation or listen to anyone or anything. When this happens, we often have to sit back and wait for the storm to pass. When it does it’s as if a veil lifts and she is back to her usual self.

I am sure Maya feels so much in her young body because of her CP and I have no doubt it gets to be too much to handle as she tries to make sense of what she feels and how to cope with it. As parents, our challenge is to create a balance between having compassion about how difficult it is for her and, at the same time, helping her learn acceptance, resilience, and discipline. It is through these coping strategies that we believe she can learn more self-control. We want her to know that her emotions and behaviors cannot rule our household. One of our ideas has been to focus on helping Maya use her extraordinary insight and self-awareness two of her strengths, to understand how she can deal with strong feelings more easily.

We have found some very helpful parenting strategies from the work of *Magda Gerber (RIE parenting method) and Anat Baniel (The Anat Baniel Method). The RIE parenting method has helped us realize that despite Maya’s limitations, it is vital that we respect and encourage her potential as a unique individual rather than seeing her as helpless. Following the concepts associated with RIE is intended to encourage the child to become, “an authentic child (i.e self-aware, clear in intention etc.) one who feels secure, autonomous, and competent.” These ideas complement much of what we have learned about the Anat Baniel Method, a movement and learning approach that we have applied to parenting. Anat Baniel summarizes her work through the “Nine Essentials” which set the stage for the brain to recognize, accept, and integrate new information. According to Anat Baniel, we are all in a constant state of learning, and in order to help the child move forward we must meet him/her where they are in their understanding and perceptions of the world. From there we may create meaningful awareness for them about their current way of relating to the world, and in turn, their behavior. Creating this awareness paves the way for the child to begin to potentially connect with new possibilities of relating to themselves and other people. It’s very similar to the idea of knowing where you are in order to identify where you can go. We naturally blend ideas from both of these individuals along with our intuition and the information Maya may provide us about what she is thinking and feeling.

Identifying Maya’s triggers for anger and what we have helped her learn:

It is very helpful to identify what situations may trigger these complex, intense emotions in Maya. We talk about these triggers with her a lot and work with her to specifically address them whenever possible. We also work to help her cope with situations when it’s not possible to avoid these triggers. After all, helping her cope with her feelings and difficult situations, rather than avoid them completely, will help her succeed in the future.

Here are a few examples…

1. Hunger! Maya must burn a lot of energy due to her muscle spasticity. She is often hungry and we have found that when complex emotions present before a meal, they are often due to hunger related mood changes. We refer to this as “hangry” which is a blend of the words hungry and angry. We always carry snacks for her and she has extra snack foods at school. At times though, situations require her to wait a few minutes to eat. We are now working on helping her cultivate the discipline to wait during times when it’s not possible for her to eat right away. We try and provide this opportunity for cultivating self-discipline around hunger by giving Maya the option to leave an activity that she really enjoys (rather than eating during it) in order to have a snack. Recently we were over a friend’s house and she chose to wait to eat until her friend was eating, rather than stopping to have a snack. She maintained her good mood in spite of being hungry. Over time we are able to use these examples to demonstrate how she is capable of waiting to eat when she is hungry.

2. People brushing her hair or touching her head, particularly without warning or without discussing it with her first: Since Maya can’t perform many of her daily living activities by herself, there is almost always someone placing their hands on her. Over time, we noticed that hair brushing causes her to have emotional outbursts. After talking to Maya about this, we came to realize that it is probably a function of her lack of independence and the continued infringement on her personal space by others that was creating her intense frustration. We have now told Maya that twice a day we must brush her hair and/or take it down etc. and we will forewarn her of this and be as gentle as possible. At the same time we have promised to get her consent before we come at her with a hairbrush or do other things to fix or primp her hair.

3. Not being understood: Maya gets angry quickly when people don’t understand what she is saying. It could be that she is speaking too softly so that that the listener literally is unable to hear her, or providing too little information for the person to know what she means. She uses a lot of energy to express herself because her muscles tighten in response to how she is feeling and it is harder for her to physically get her words out when this happens. It also takes her additional time to process language and generate a response even though in her mind she may know what she wants to say very quickly. Maya loves connecting with people and therefore it is very important to her that people understand what she intends to share with them. We have made headway in this area by cuing her to answer questions that would provide information that we felt was missing from what she was sharing. We encourage her to take her time, take a few deep breaths, and offer as many details as she can to people. At first she was resistant to listening to us, but over time she has experienced for herself that offering more information usually leads people to become increasingly interested in speaking with her. ____________________________________________________________________________

Just when I think we are moving ahead Maya will have an outburst that is longer and more intense than any she has had previously. This back and forth pattern with her emotional development is not so different from what we have observed with her physical development. We continue to remind ourselves that progress is not always a straight line and that emotional issues like physical issues must be broken down into small manageable components. We hope over time that these broken down parts will make sense to her and she can comfortably and willingly pick up the pieces and put them together herself in a meaningful way.

I realize that we are lucky that Maya has a strong verbal skills and insight into her emotions. For children who are non-verbal the frustration and emotional turmoil have one less way to be resolved. That extra limitation makes it even harder for parents to figure out how to help their child’s emotional and behavioral growth.

One example of Maya debriefing us on her feelings:

Last week we experienced one of those rare moments when we all were calmly moving forward and learning together instead of spinning around in an emotional whirlwind. Maya started to quickly become upset when her friend wasn’t answering the phone. She began to whine and then raised her voice about how upset and angry this made her. She even blamed her friend for her unhappiness because she wasn’t answering the phone! I didn’t react immediately to her behavior but instead, thanks to a rare night of good sleep, was able to maintain some distance from what was a developing situation. I listened from the other room and took a few minutes to think. I told her father that I believed something deeper was triggering what appeared to be whining and simply obnoxious behavior. I asked if there was something else bothering her.

Fortunately, Maya is the type of child to draw distinctions between what someone else believes she is feeling and how it may differ from what she is actually experiencing. In this instance she said she was lonely and bored and angry, and that she hates Sundays because of this. Sundays are days when we try and take it easy and it’s often when Maya becomes frustrated and faces emotions associated with having a body that doesn’t allow her to do what she wants when she wants to and without someone else’s help. It was painful to hear her frustration, but it was vital that we all get clarity on what precisely was bothering her so that we could discuss the larger issues causing it. Unfortunately, even when we got to the root of her behavior, and I offered her an alternative activity, her anger became more intensified. In her own words Maya shared that my suggestion caused her more anxiety because it was something new and too overwhelming for her to process on top of her anger.

She sat with her dad and explained in great detail what her anger was about and how she didn’t know what to do to resolve it. There were some typical kid issues in there about simply being bored and annoyed that she can’t do exactly what she wants, but also some feelings about being limited in her activities. When I proposed a solution of having a new friend come over she said she felt too overwhelmed. The thought of doing something new “overloaded” her and she became confused and frustrated because she also thought she would ultimately have fun. She felt trapped between her opposing feelings and couldn’t see a way through. It was very humbling. Rather than having an agenda to irritate her parents (which yes, sometimes she admits that she does have), she was feeling “so many things pile up on top of each other like a big ball and her body was like whoa”.

When Maya was younger we learned early on that we can’t force her into a space of receptivity for self-reflection and learning. We have to follow her natural rhythm of emotional recovery even if we demand that she stop a particular behavior. Once she is calm and has some distance from what took place (usually that evening), she is often receptive to discussing and thinking through what happened. Waiting for her receptivity, and sometimes our own recovery, allows us all to have a more meaningful and effective discussion. This time she was ready almost immediately to discuss and think through her feelings which was great!

The rest of the day wasn’t a dream or anything, but at least we broke through the surface and helped her break down this wad of emotion that she was lost in. We keep doing this over and over again so hopefully her frustration and anger become increasingly manageable. Often I ask her when she is going to be done screaming or grunting in emotional circles, pointing out that she can stop and choose a different direction with my help. More often now we are seeing her stop herself mid tantrum and we are having more luck finding creative solutions to getting her attention so that she regains control over her emotions more quickly. Maya says that she wants to get past this problem as well. Even if it takes more time, energy, professional guidance, or even peer influence, I am confident we will find ways to help her handle her feelings in a healthy and increasingly mature manner. None of this is easy for any of us. I realize that, just like other aspects of Maya’s development, it sometimes takes her longer to learn what may come more naturally to other children. At the same time, she is also having to process and integrate many circumstances and feelings her peers haven’t faced and will never have to.

This is why it’s incredibly important for me to maintain my resilience and patience and seek help when I am feeling overwhelmed or lost. We are facing some complex issues with Maya and although giving in to her may be easier in the mean time, like any other child, it won’t serve her well in the long run.

You may wish to visit the “Guiding Behavior” section of the website for more related information and articles on this topic.

*Magda Gerber’s early work in the US included working as a therapist at a children’s hospital with older children who had cerebral palsy. She then spent seven years working with autistic children. Magda believed in trusting babies to do what they were ready to do and allowing them to experience mastery in their individual way and time. She treated babies with special needs no differently. She taught us that respecting a child means waiting patiently and trusting, enjoying what the child is able to do rather than wishing or (ever so subtly) asking for more. -From the blog of Janet Lansbury, RIE instructor and RIE Board Member