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Tips for: Emotional Regulation for girls with Fragile X

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The easiest way I can describe emotional regulation is the ability to come back down to baseline when emotionally heightened (e.g. angry, anxious) and bring yourself back up to baseline when emotionally down (e.g. sad, bored). I usually draw this graph when I explain it to my patients.




Figure 1. Emotional regulation ability where baseline is optimal arousal.


I think sometimes as psychologists we tend to use the term ‘emotional regulation difficulties’ as a synonym for ‘this kid is having a lot of tantrums.’ This is one part of emotional regulation, but when we think of emotional regulation like this graph describes, we realise it’s a pretty difficult skill and something lots of adults struggle with too! When working with kids around this issue, and with my own girls, I like to teach a few different skills that I’ve listed below.


The feelings wheel

I love my feelings wheel. It’s freely available on the internet (just google ‘Feelings Wheel’, then print off and laminate), and I first came across it when training as a Lifeline telephone counsellor. In the training our elderly facilitator with kind blue eyes that twinkled would take the role of a caller explaining their suicidal thoughts or life difficulties. Our job was to look at our feelings wheel and try to identify the emotions they might be feeling.


When I started trying to learn the skill of labelling other people’s feelings, I couldn’t believe how bad I was at it! I considered myself I reasonably psychologically aware person, and yet it was a struggle for me to infer from a person’s words how they felt. Even more surprisingly, I found identifying my own feelings to be an even more difficult skill. Now, after five years of practice, I have a much better handle on it most of the time. However, I think we typically undervalue this skill of emotion recognition and assume our kids are better at identifying how they are feeling than they really are. I have a feelings wheel on our fridge and ask parents of the kids I see to do the same. Whenever an emotion comes up, I encourage the kids I see to examine the feelings wheel to see if they can work out what emotion they are feeling. The reason this strategy is so useful is that once we know what emotion we are feeling, we can much more readily figure out what might help us if we have strategies to deal with common feelings.



Figure 2. The Feelings Wheel


Using body language to help label feelings for kids

With my own girls, I have found that due to the anxiety of disappointing myself or other adults, they often find it difficult to state their feelings directly. Just pointing to where they feel like they are at on the wheel can be helpful, but as a parent I have also learned to look at my girls’ body language to identify their feelings as well. For example, when we said to our daughter this morning, ‘No, you can’t have those toys’, she said, ‘I’m sorry Mum and Dad for asking’. I think she was anxious about us being cross with her for asking, but instead of asking us this directly, she hoped she would make it better by saying sorry.


I could see her body was collapsed in on itself and tense, and I wondered if she also felt frustrated with us for saying no. So, to help her identify these feelings, I asked: ‘I’m wondering if you are feeling anxious about making us cross and frustrated because we said no?’ She agreed that’s what she was feeling. By labelling her feelings, we could then address what was really happening for her and how best to process these emotions. Looking at your child’s body language to help label emotions for your child is helpful if you feel like they aren’t developmentally able to do it themselves yet. motions


With our girls with Fragile X, I think we can scaffold their ability to identify their own feelings with these few simple techniques of using a feelings wheel, and assisting them with labelling feelings through body language when you feel they are anxious or unable to describe how they feel to you. Now, what do we do with the feelings once we know which ones they have?


Over arousal strategies

The term ‘arousal’ is a way of describing the degree to which a person is psychologically or physiologically stimulated. Optimal arousal (our baseline on the graph above) is a state where we can concentrate, be alert and act mindfully. Too much arousal and we flip our lid (see below) too little arousal, and we fall asleep. ‘Overarousal’ is a way of saying that a person’s nervous system has become over stimulated. For girls with Fragile X especially, we have to keep in mind that this overstimulation can be internal (psychological) or external (environmental).


When I think about my girls, I think of ducks swimming on a lake. Gliding along on top, madly paddling their feet underneath. I admire them so much; they cope so beautifully with a world that can be confusing for the highest functioning people among us. I think this is something that has become especially apparent after the diagnosis. My girls are masters of camouflage. They can almost blend in (sort of) a lot of the time. I am often still fooled about the degree to which things are tough for them. When I stay in this place of empathy, I’m much more able to identify and help them with overarousal- because in fact, they are probably in a state of overarousal most of the time!


Situations that will lead to overarousal in my own girls are things like: being at school for the whole day, being in a social situation for a long time, lack of structure, too many afterschool activities (e.g. ballet for one and cello for another on one day where they have to come in the car with you for both). For my eldest, TV also seems to be a big problem, if she watches a whole movie and has had a stressful day for whatever reason, she will get a headache from watching TV from the sensory overload of the colours and lights.


Emotions that go with overarousal are things like anxiety, anger, frustration, fear, agitation, silliness, over excitedness etc. If you are familiar with the zones of emotional regulation, these are yellow and red zone emotions.


The Vagus Nerve

It’s important to say a few words about our nervous systems here. We have two nervous systems. Our sympathetic nervous systems (AKA our ‘fight or flight’ nervous system) that is active when we are over aroused. Then we have our parasympathetic nervous system (AKA our ‘rest and digest’ nervous system) that is active when we are calm. So physiologically, we are aiming to ‘flip’ ourselves over from sympathetic to parasympathetic when we come back down to baseline.


To flip our kids (and ourselves if needed) into ‘rest and digest’ mode, the most straightforward way is to activate our vagus nerve. Vagus means wanderer in Latin, and this describes the nature of this nerve, it wanders all over our body. There are a few spots where we can activate it by ‘pushing’ on it to start our ‘rest and digest’ nervous system response. One way is to breathe deeply. As we breathe into our abdomen, our diaphragm pushes on our vagus nerve, which wraps around some of our internal organs, and activates it. Now you understand why psychologists keep telling you to breathe deeply ad nauseum! Additionally, tapping on pressure points where the vagus nerve comes close to the surface of our body can trigger our rest and digest response. Tapping with your first three fingers above your eyebrows, between your first and second rib just below your collar bone and tapping the pinkie finger side of your hand on the open palm of your other hand all activate the vagus nerve. Interestingly, as you and your daughter practice this activation, you are building something called ‘vagal tone’ where the body becomes used to activating this calming nervous system and becomes quicker and more efficient at activating the response.


Removing stimulation

To bring our kids back down to baseline we need other calming or de-escalating strategies targeted to the source of their overarousal also. For example, when Amelie becomes overstimulated from a sensory point of view, the obvious strategy to bring her back to baseline is letting her be alone in a dimly lit room with a book.


Grounding

When anxious, it can help to do some grounding strategies to bring Amelie and Adelaide back down before chatting through how they might feel. My favourite strategy is a rainbow grounding strategy that a colleague put me onto. ‘Grounding’ is just a term that essentially means to get out of your head (where all the psychological pain is e.g. worries for the future etc.) and into the present moment where you are in control. Grounding is often achieved through labelling what is happening around you through the five senses to bring you back to the present. For kids, one easy way is to get them to verbally or with coloured textas go through the rainbow and identify something they can see that is red, orange, yellow, green, blue, indigo, violet.


Proprioceptive Input

At the risk of stepping into OT territory, I also find with my girls that they often need strong proprioceptive input (help to know where the boundaries of their bodies are and where they are in space) and that deep pressure to their joints is incredibly soothing. To get this pressure, my youngest sometimes likes to walk around with a heavy backpack although she’s not going anywhere. My eldest sleeps under a weighted blanket in a bed sock. They both love back massages at the end of the day and say they feel much more relaxed after.


But my favourite strategy for deep pressure to regulate is called popping dropping. Maybe I love it because Jon invented it and I don’t have to do anything, but from a psychological and body perspective, it’s got so many positives. Popping dropping is so named because it involves my husband ‘popping’ my girls up into the air like popcorn, and ‘dropping’ them on our bed. Yep, I leave the room when he does it because I’m worried someone will end up with a head injury. Jokes aside though, its seriously regulating for our girls. Jon will wrestle with them, ‘trap’ them so they can try their strength against him and escape, flip them in the air, and drop them from various heights onto our bed. As you can image as 7- and 9-year-olds, they love it. They squeal and giggle and yell excitedly. Very cute. It’s so regulating for them for a couple of reasons. It’s a documented fact that when Dads regularly wrestle with their kids they help them develop emotional regulation, ability to plan their behaviour and social skills (Fletcher, StGeorge & Freeman, 2013). But also, that deep pressure helps us regulate our emotions (Shafir, 2015).


A Few Other Tips

Other strategies I use to calm our over aroused girls include progressive muscle relaxation, where you tense and relax your muscles one by one. This is quite an old psychological strategy that has mountains of evidence behind it. Another little activity I love is a free app called ‘Stop, Breath and Think’. It has a range of three-minute videos that each teach a mindfulness skill such as breathing, letting an emotion pass without it overwhelming you and other great tools. Walking is another great regulation strategy for over aroused kids, the movement bi-laterally stimulates the brain which has been shown to reduce stress (e.g. Kaminska et al., 2020).


Modelling

Lastly, to help your kids regulate their emotions and come down from overarousal, one of the most important things you can do is model good emotional regulation. I read a fascinating study that concluded the best predictor of a child’s ability to stay calm and think logically when emotional was how their parents modelled this process. For example, when frustrated, did the parents lose their cool or stay calm? I know this may seem like a lot of pressure, but I see it as perhaps a great opportunity to really make an impact on an area of development that is typically very difficult for girls with Fragile X.


Under arousal Strategies

When kids are under aroused, they need more, not less stimulation. To qualify, they need more stimulation if it’s daytime and they need to still participate in family activities. If a child is under aroused at bedtime, that’s a great thing and should be encouraged with less stimulation. You’re with me, I know you get it. So, this applies to kids who complain of tiredness, boredom, sadness and other under arousal emotions where they need to get back up to baseline. Activating strategies to get a kid back up to baseline might include walking, bike riding, structured activities like card games, craft, sport, sensory tools, social time, backyard Olympics etc. I won’t spend much time on this as it’s usually less of a problem for parents, but it’s an important distinction as sometimes parents can fall into the trap of providing less stimulation and activation when kids are stuck in an emotion like sadness that they have already tried to work through. Putting your kid in front of the TV when they are sad might help, or it might keep them stuck in under arousal and inactivity.


I find when my youngest daughter Adelaide becomes under aroused, she looks for food to increase her level of stimulation and interest (she is hypo sensory to oral and tactile inputs from my observations). Because she is also impulsive, this is not a great combination. So, providing high stimulation alternatives that are sensory e.g. snuggling with me in a blanket or putting music or an audio book on while she colours can help. Also increasing her cognitive load (making her think more to help her increase internal arousal) such as putting her in charge of following a recipe can increase the level of stimulation in both her internal landscape and external environment, so she doesn’t feel the need to increase it herself with food.


References


Fletcher, R., StGeorge, J., & Freeman, E. (2013). Rough and tumble play quality: Theoretical foundations for a new measure of father–child interaction. Early Child Development and Care, 183(6), 746-759.


Shafir, T. (2015). Movement-based strategies for emotion regulation. Handbook on emotion regulation: Processes, cognitive effects and social consequences, 231-249.


Kamińska, D., Smółka, K., Zwoliński, G., Wiak, S., Merecz-Kot, D., & Anbarjafari, G. (2020). Stress reduction using bilateral stimulation in virtual reality. IEEE Access, 8, 200351-200366.

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