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Tips for: Anxiety for Girls with Fragile X

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Tips for Anxiety in Girls with Fragile X
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The way I conceptualise anxiety from the psychology literature is this: To decrease anxiety, you must do what makes you anxious over and over again. As you confront what makes you anxious, your tolerance for the feeling goes up, and your fear of the situation goes down. This is because when you feel anxious, there is a feared outcome you generally imagine. For example, ‘If I give this presentation at work, I will stumble over my words and everyone will think that I don’t know what I am talking about’. If you have ever had to give regular presentations at work though, you would know that the first time you are terrified, the second time you are quite fearful, the third time you are just nervous and on and on until you are a little bit nervous, but have nowhere near the anxiety you experienced that first time. As you practice, your fears are disconfirmed, that is, you realise you have nothing to fear, and people aren’t actually judging you but are just interested in what you have to say. The reverse is true also, if you avoid what you are anxious about, your anxiety will stay the same or increase until you face your fear.

This is helpful when we think about parenting a girl with Fragile X because as you would know, they are so anxious! My eldest is a ninja level worrier, she actually worries about being worried, which is called ‘metaworry’ (!) in the literature. The framework of exposing her to her anxieties has been helpful, because previously, I used to take her out of situations that made her worried. She hates hand dryers? I would make sure they don’t turn on while she’s in the bathroom. She’s worried about spiders? I would check for spiders around the shed before she goes in. She’s worried about getting in trouble? Don’t discipline her when she’s done something wrong.

From an evolutionary perspective, we now know that our brains are wired to detect threat in our environment. Historically, when we saw something yellow behind a bush, it was adaptive to react quickly and run. If what we saw was really a rock, there was no harm done. If what we had seen was a lion, our lives were saved! 95% of the time, the yellow object was probably a rock, but those who didn’t respond to it as a threat would lose their lives the other 5% of the time! Fast forward to today and our brains still do the same thing- even though 95% of the time there is nothing to worry about, our brains still react to things that could be dangerous- just in case. This reaction, commonly called the fight, flight or freeze response, is triggered almost instantly, and over-rides our logical thinking brains so that we can act quickly.

Ever wondered why you can’t reason with your daughter when they are in a situation that really worries them? It’s because her language capacities have been shut down by her brain that is doing its best to keep her safe from something that might hurt her! Seeing our children’s anxiety from this perspective helps us have empathy for their (sometimes bemusing) reactions; they cling, cry and scream all because their brains are telling them to get out of a situation it thinks might hurt them!

As mentioned before, sometimes in our attempt to help our children, we unwittingly make situations more difficult for them. We know that avoidance increases anxiety. This means that if we let our children avoid places or activities that triggers their anxiety, we allow the anxiety to grow. This is because letting our children avoid situations means that they don’t experience handling the situation in a capable way, and the situation becomes reinforced in their mind as dangerous. For example, if a child is afraid of flushing the toilet and we as parents start doing it for them, we tell them with our actions that we don’t think they are capable of flushing the toilet and that we need to do it for them because it is dangerous. So how can we help our daughters?

Acknowledge and Empathise

Firstly, we can acknowledge our daughter’s anxiety by labelling her emotions and empathising with them: ‘Hey, I can see that you are feeling really worried about swimming lessons, and it looks like it doesn’t feel very good to be in your body right now.’

Determine when to address the Anxiety

Before trying to force our children to do everything they are afraid of, we need to step back and work out whether this fear is a priority to address. For example, if a child is afraid of the dark, and a low-watt night light fixes this problem, this might be a fear that we choose to put off addressing until the child wants to go to sleep overs at other children’s houses when they are older. However, if a child is afraid of swimming and your family spends a lot of time near the water, making sure your child becoming safe in the water may be deemed a priority. The question to ask is: Will this fear, if it continues, interfere with my child living a full and meaningful life? If the answer is yes, now might be the time to address the fear.

Create a Plan

If we decide that our child’s anxiety needs to be addressed, the next step is to create a ‘step-ladder’. If your child is old enough, they can help. The idea is to come up with a list of feared situations using SUDS (subjective units of distress) ratings. For example, if a child’s anxiety about putting their face in the water makes them feel 9 out of 10 SUDS, we can then come up with about 15 other items that will help the child ‘work up’ to this big fear.

For example, going to the pool might be a 3/10, sitting in the learn to swim area for fifteen minutes with clothes on might be a 5/10, and getting in the pool and standing on the platform may be a 7/10. When we have our 15 items, we can order them from lowest distress to highest and create a ‘step-ladder’ that leads to the child’s biggest fear. Then, we can work our way up, rewarding the child for every step on the ladder they complete.

The important idea to grasp here is that exposure to the feared situation, will eventually lead to a decrease in the child’s anxiety. A common mistake is to tick off steps on the step ladder before the child’s anxiety subsides. It is recommended that you practice a step with your daughter again and again until their anxiety goes below 3/10 SUDS for that particular step. If we move too quickly, we don’t give children time to become comfortable in the situation and the anxiety sticks around for longer.

An example

I have done this process more than I can say with my eldest daughter Amelie (the Ninja worrier). Firstly, I think it’s important to admit that this process had the most traction for us after starting Fluoxetine (Anti-depressant/Anxiety medication from a class of drugs called SSRIs). However, I would say it was successful before this, just very slow going.

When Amelie started kindergarten, she was selectively mute due to her high anxiety about talking to the teacher and fellow students. The teacher was mystified because and assumed she had a severe language disorder. As we had just gone through two years of extensive speech therapy for just that reason, and the speech therapist had declared her language as age appropriate, I knew that wasn’t the case. I worked closely with the teacher to educate her on anxiety. The compassionate teacher wanted to just let her do nothing and not answer questions to make her comfortable (a response I totally understood because that was my natural inclination as a parent too!). However, I knew there would be minimal change if we let that happen. I explained to the teacher that it was ok for her not to do the task as prescribed (there was no way she was going to crack and suddenly start answering these questions anyway!). However, I explained to the teacher that she had to do something. For example, she didn’t have to read the sight words, but if the teacher read them to her she had to point to the corresponding word in writing to show she knew what the word was. Sure enough, when all tasks were modified in this way, she was able to non-verbally complete tasks as it was less anxiety inducing. Eventually, by the end of the year, she was speaking to the teacher and her classmates. Now three years later, one of the teacher’s aides calls her ‘chatterbox’. Amelie has repeated this process with me in many different situations that cause her anxiety. She is one of the strongest kids I know, and I am very proud of her courage and persistence in facing her fears.

Managing your own anxiety as you parent your daughter

I am a naturally an anxious person (thank you pre-mutation FMRI gene), but when Amelie was first diagnosed, my anxiety skyrocketed like never before. I thought Fragile X was a termination point on a railway line- the train stops here- even if you want it to go on it can’t. I thought any spark I had seen in her before was foolishness, reading into situations to make myself feel better. As soon as I started to think this way- I mean- as soon as, I found evidence to support my newfound belief. Psychologists call this confirmation bias; we seek confirmation in our environment for the beliefs we hold about ourselves and others. I started to think that I could not believe how much Amelie didn’t understand. This went on for weeks. Whenever I talked to her, I felt desperation- there is nothing going on behind her eyes, I thought. As you have probably experienced, as we start to dwell on negative thoughts our feelings follow us down the slippery slope, and then our behaviour comes on board to complete the awful circle of negativity. I started to feel hopeless, and then began to verbalise my frustration to Amelie. Of course, our children don’t exist in bubbles, so as my behaviour became more unhelpful and negative, her behaviour became worse. Now we were swimming in a negative soup of thoughts, feelings, and behaviour together!

After a while (probably too long considering I’m a psychologist!), I remembered another cool little technique from ACT called defusion. The idea behind this technique is different to traditional Cognitive Behavioural Therapies (CBT) that focus on whether the thought you are having is rational or not. In CBT, you generally get your patient to dispute irrational thoughts by asking: ‘Is this thought really true?’ The problem was that maybe my thought was true- Amelie wasn’t intelligent in the traditional sense, and where did that leave me? That’s where ACT comes in. ACT isn’t as interested in whether or not a thought is true, but whether it’s helpful. It changes everything when you begin to ask: ‘Is the thought that ‘my daughter is unintelligent’ helpful? Does it bring me closer or take me further away from the parent I want to be, and even the person I want to be?’ Unsurprisingly, the answer was no, it wasn’t a helpful thought. It was taking me away from the warm, empathic, encouraging, hopeful parent and person I wanted to be. So, I started to let it go.

There are a couple of different strategies that helped me let this thought go. You can use these with any unhelpful anxious thought you have about yourself or your child. The first is to, in a kind voice, say: ‘Thank you mind, for bringing this thought up- I understand you are trying to be useful, however, this thought is taking me away from the parent I want to be, so I’m going to let it go’. After this, the thought likes to tap on the door of your mind wanting to be readmitted, so I tend to focus hard on what I’m doing, using my five senses to wholeheartedly engage in the experience (the strategy of ‘grounding’ that we talked about earlier). For example, typing this out has re-activated my anxiety about Amelie’s intelligence, so I’m focusing on how my fingers are moving on the keys, the honey taste from my tea, the feel of my bare feet on the floorboards, the sound of cicadas outside and the smell of cool summer air after rain.

Another idea is to insert the phrase ‘I’m having the thought that…” in front of your thought. You will be surprised at the difference it makes. This changes your relationship with the thought. Initially we often think our thoughts are an accurate reflection of reality with power to predict the future and they carry a lot of weight and importance. With this technique we can expose our thought for what it is- a bit of text that is running through your mind that may or may not be important or predictive of the future. So, for me, when this thought resurfaces, I can say: ‘Ok, I’m having the thought that Amelie isn’t intelligent. That may or may not be true, but it’s definitely not helpful to focus on. It makes me frustrated and keeps me distracted from doing the best for Amelie right now’.


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