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Tips for communicating with your daughter with Fragile X

Updated: Feb 6, 2023

The genesis of this post occurred when my own daughter started getting stress-induced migraines. I have only experienced a migraine once, during a period of intense stress.

Knowing how stressed I was at the time I experienced my migraine, I was staggered at how internally stressed my beautiful daughter must be as she started to experience these migraines regularly.

I was shocked at the mismatch between her generally happy demeanour and the internal pressure she must have been experiencing inside.

I realised I would have to be far more proactive in helping her communicate her stressors than I had been in the past, and not wait for her to take the initiative and come to me with her worries and stressors.

The following is a few ideas of how you might make space for your daughter to open up and discuss her fears, stresses and feelings with you to prevent them building up and manifesting in somatic (physical) symptoms or behavioural meltdowns.

1. Often girls feel more comfortable talking when you are doing an activity together like walking, driving, or playing cards. This is partly because they feel like there is less pressure to respond in a timely manner. It also allows gaps for their own reflection and for them to open up without an adult filling the silence. Prioritise these times so your daughter has lots of opportunities to communicate with you, but don’t stress if they don’t say much.

2. Listen to what they say and what they don’t say. For example, are they telling you everything is fine, but they seem emotionally flat? You can gently point out discrepancies by saying something like, ‘Thanks for sharing about your day. I’m just noticing that even though you’re saying things are fine at school you seem a bit flat. What do you think that might be about?’ Also look for physical symptoms such as headaches or stomach aches that may tell you they are overwhelmed or anxious.

3. Validate feelings. We love our kids and don’t want to see them in pain but jumping in to offer a solution can make your tween or teen daughter feel like they aren’t heard. For example, telling them ‘Don’t worry’ or ‘It will turn out fine’, even if what you are saying might be true, usually shuts conversations down prematurely. Making comments like, ‘I can see that would be really frustrating for you’ can help them feel heard and encourage them open up further. It is also important to note that if your teen is discussing a unwise or inappropriate behaviour with you, you are not condoning what they did by validating feelings. Instead, you are helping them feel understood. For example, if they text something hurtful to a friend, explaining that you understand how they would want to lash out because they felt hurt by this friend might be helpful. This does not mean you are saying what they did is ok, merely that you can see things from their perspective.

4. Praise your teen. There’s a statistic that says marriages need five times more positive comments than negative comments in order to maintain marital satisfaction- apply the same principle to your teen to help them understand you are a safe, loving place for them to share their feelings.

5. Try to understand the function of their behaviours. For example, instead of getting angry that your teen was on their phone for the two hours you thought they were doing homework, try to work out why they are behaving that way- are they anxious about starting the task because they don’t understand it? Is there a friendship situation at school they didn’t understand? Then address these worries or confusions first before disciplining and giving consequences if/as needed.

6. Stay calm even when you are unravelling on the inside. Staying calm and not jumping in with judgements will encourage your child to feel comfortable sharing with you.

7. Make eye-contact- it shows you are paying attention and helps your child develop empathy. This can be overwhelming for girls with Fragile X so look for signs they are becoming over-stimulated and use at your discretion.

8. Consider using a small visual scale or rating to allow your daughter to rate how stressful her day was. You can use this as part of a daily debrief and collaboratively brainstorm strategies with your daughter about activities that might bring the worry down. Thanks to Marcia Braden for this tip.


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