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Pain that hurts and pain that heals

Updated: Feb 6, 2023

Band-Aids we use for behaviour when more is required for our kids with Fragile X

Imagine you are riding your bike. Fast. You don't see the unsealed edge of the road ahead. You fall and your knees have that horrible experience of being cut and having gravel inserted in them at the same time.

Now imagine you go to your GP to have the cut seen to. Your GP looks at the cut, then simply covers it with a large bandage and sends you away. How would you evaluate the helpfulness of that GP?

I'm assuming you would not rate it highly! Why? Well, in order for the cut to heal properly, it needs to be cleaned, and the gravel needs to be removed in order for healing to take place and avoid infection.

Now think about this as an analogy for how we treat the behavioural difficulties that comes with having Fragile X.

Imagine there is girl who habitually interrupts, or a child who hits or bites themself or others when angry- how do we manage it? The temptation is to put it in the 'too hard' basket, ignore it (not in the good way- in the ignore.. ignore.. explode way!), or periodically give consequences for the behaviour when we have energy or aren't desensitised to it.

They're a few options I've tried anyway. I'm sure there are more.

But let's think about this- if we view this behaviour as a wound, what are we doing when we respond in these ways? It seems to me like we are putting a band-aid on the behaviour, instead of going through the pain of addressing it properly so the cut can heal and not cause pain anymore.

The problem is (if we continue with our analogy) that then the wound festers, becomes infected, and the problem gets bigger.

Take our interrupting example, if we allow this behaviour, or inconsistently give consequences for it, we perpetuate it- that is- we allow it to continue.

What happens when the girl gets to high school, or finally makes a meaningful friend, or is approached for a relationship? It might all go smoothly, but on the other hand, other's might get tired of her interrupting them all the time and lose interest in being in relationship with her.

So why do we band-aid? I think the reasons put band-aids on behaviours are many and varied.

For example, we may feel much sympathy or empathy for our children, and this is good! However, we may become incapacitated by our emotions and fail to set the boundaries we need to as a result.

Or, we may be so exhausted from having a child with additional needs (or 2, or 3!) that we simple don't have the energy to address their behaviours.

There may be so many other behavioural difficulties that many get pushed to the side as we try to manage the most destructive or dangerous behaviours first.

Or perhaps we have beliefs about wanting our kids to 'have a good life' and what that means. For some of us, the tendency is then to give them special treatment, or most of the things they want, because we can see how much they struggle and want them to have some pleasure in life.

Do any of these sound familiar? Me too. I've been there as well- and visit regularly.

Just to clarify, I am definitely not saying we shouldn't have empathy or compassion for our children- of course we should. In fact, it's compassion that should drive our willingness to put our child through the emotional pain of changing a behaviour in order for them to have the best chance of having the life they want.

When we can grasp this type of compassion- that we love our children too much to leave them where they are- we can start to build a framework for intervening in this way.

So what are the other options? Here are some suggestions.

First, identify just one behaviour that is problematic. Enough said- if we work on more than one at a time, we will become overwhelmed and ineffective.

Work with a psychologist, support worker, (or just with yourself!), to conduct a Functional Behavioural Analysis. This is a simple tool to help you understand why the behaviour keeps happening, using the acronym ABC. The premise here is that a behaviour will not continue unless the child is getting something out of it. Here's one I conducted for my daughter's interrupting behaviour:

A- Antecedent. What comes before the behaviour?

Typically two adults are having a conversation. If A is present, she will have an idea about how to contribute to the conversation, or an off-topic thought she wants to share. If she is elsewhere, she usually has a question she wants answered, wants to report on her sister's behaviour or wants me to help her with something.

B- Behaviour. Describe exactly what happens.

She starts talking- explaining her idea, opinion or asking a question whilst the adults are mid-sentence. She is usually next to us or has come up to us to talk. At times, she will put her hand on my shoulder as she has been taught to do, but instead of waiting until I acknowledge her she will begin talking straight away.

C- Consequence. What happens after the behaviour?

I usually respond with: 'A, please don't interrupt.' However, then she has generally said what she wanted to say and I typically respond to her request or question.

Now look at your Functional Behaviour Analysis and see if you can work out reasons why the behaviour might be happening. In this case, I can see that although I reprimand A, she also gets what she wants (request or question responded to) so there is no reason for her to wait when interrupting will get her needs met faster. She also has ADHD, which probably contributes to the impulsivity side of her behaviour. She may also have forgotten or not be clear on the protocol we taught her years ago about putting her hand on my shoulder and waiting. Note that these reasons are both antecedents (what comes before) and consequences of the behaviour. We can modify both to make our intervention most effective.

Make a plan to modify the factors that keep the behaviour happening. For example, for A I decided to put a tick on her reward chart every time she managed to prevent herself from interrupting, and stop responding to her request when she interrupted (say quietly without eye contact- 'We don't interrupt' so she doesn't repeat the request thinking we haven't heard her). I also decided to revise and update the protocol now she is older (hold my hand and wait for an appropriate gap in the conversation before jumping in), and look at some strategies to help impulsivity from one of my favourite executive function books- Smart but Scattered by Peg Dawson and Richard Guare.

Implement your plan. Decide when and for how long you will focus on the behaviour. For example, you might put your plan into practice for two weeks, then re-evaluate whether you continue (if the behaviour is changing) or problem-solve further strategies (if the behaviour is staying the same). Just a note, if the behaviour is staying the same, check you are being consistent with the strategies you have decided on. the research shows that inconsistent reward or consequences for behaviours are both ineffective for the child and frustrating for the parent!

Thanks to Marcia Braden for her webinar that partially inspired this post.


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