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Expectations and Goals for Ourselves and our Girls with Fragile X


Defining Expectations and Goals
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What do we want for our children? Before the diagnoses, I had no concept of how much stock I had placed in my daughters following the socially prescribed trajectory that society holds up as an ideal. Finish school. Go to uni. Find a partner. Have lots of friends. Get a job and move out. Have a career. Have kids. Make money. All of these landmarks drifted away from me into the distance as I began to understand Fragile X. I was suddenly thrust into a sea of uncertainty- no land in sight. As I went on, I continued the journey between society’s assumptions and my own values daily, sometimes finding my feet on my own new land and sometimes not. Every parent who receives this diagnosis must face the question- What are my new expectations and goals for my child? Who do I want them to become?



For me, one of the most helpful frameworks for this journey comes from a psychotherapy called Acceptance and Commitment Therapy (ACT). ACT brings us the useful idea that rather than simply imbibing society’s wishes and goals for ourselves and our families, we can sit back thoughtfully and define our values. The aim of this idea is to then use these identified values as your compass to guide you as you make decisions about where to spend your time and where to intervene for your child. For example, I have a strong value of compassion and empathy. Therefore, in the activities I choose to engage in for myself and my children, these qualities can be front of mind- acting as my compass. My goal can then change from a more socially prescribed goal which will potentially set me up to feel out of control and disappointed: e.g. ‘How do I help my children fit in or achieve academically?’ Instead, it can become a value driven action: e.g. ‘In this circumstance, how do I help move my children towards compassion and empathy? How do I help them see how others might be feelings? How do I foster empathy in myself for them?’ One of my other values is work ethic. So, when I do therapy homework with my children, this is a chance for them (and me!) to move towards a stronger work ethic, rather than an opportunity for everyone to become frustrated that the child can’t do a lot of the work. We can move towards developing persistence. In this way, the goal of the activity changes from getting the right answer to having a good attitude.


This idea is so powerful because it shifts the focus. I find this value driven action very freeing because it releases you from society’s stranglehold and gives you power in the here and now to help your child grow toward the person you want them to become. Of course, you aren’t 100% in control, your children have free will and their own limitations, but you are a big influence on them.


Expectations

I once read a study where a teacher was given a mixed group of new students. One group had previously been identified as ‘gifted’ and the other had been diagnosed with some form of learning difficulty. Interestingly, the teachers were told the opposite- that the gifted kids had learning difficulties and the group with challenges were gifted. Then they taught them for a year. The incredibly surprising outcome was that the children with learning difficulties outperformed the gifted children by the end of the year. I guess that’s the power of expectations. People sometimes say that children will live up or down to your expectations. I think there’s some truth in that.


This may be controversial, but I think we need to expect more of our girls with Fragile X. Please hear me, I don’t mean that we should expect more of them than they are capable of. Our expectations will be very different to those girls of the same age who are neurotypical. However, I think we can expect more from them in terms of their ability to develop a strong character. By character, I’m referring to learned abilities such as persistence, assertiveness, kindness, loyalty, compassion, thoughtfulness or other (not so simple!) traits like these. Character has fallen out of favour in our personality focused world. However, I see character as a springboard to all sorts of opportunities for our girls. For example, I can’t prepare my daughter for exactly what sort of work she might get- teaching her how to be a childcare worker, or an administrative assistant. But- if I teach her to be persistent, honest and manage her anxiety well, they are skills that will surround her and help her as she works towards a job skill.


Building character is slow work. However, I try to assume that my children are capable of change, that they do have capacity for empathy, courage, love, contentment etc. and may be able to change their behaviour as I chip away at certain traits with them. I usually have to scaffold their thinking for them as I teach them certain skills, but they will be able to contribute something For example, if you are working on greeting people politely, even if they greet you at the door with a ‘Hi’ instead of refusing to acknowledge you- that is growth and a great step! I also know how much anxiety plays into this type of training for my children, particularly when I am requiring them to do something new or uncomfortable. It’s important for me to start where my girls are at, not where I think they should be at. When my children are too anxious to say ‘Hi’, I encourage them to do what they can. This might mean waving without eye contact, but that was a victory after years of training for my highly anxious child.


Yes, my kids aren’t neurotypical, but that doesn’t mean they can’t develop a strong character. It might take longer, it might be more frustrating, but it’s a value of mine, and I hope it will eventually be a gift for my children socially and relationally.


Expectations of myself

As I mentioned, my expectations of my girls have changed since the diagnosis. But my expectations of myself have been altered so much as well. I am forever changed by my girls’ diagnoses. For months after I found out about my eldest, I would wake up and for a few seconds would not remember that she had Fragile X. I felt- happy. For those few seconds before I remembered what had happened, I felt content- fine. Then I would remember. It was like stepping into a nightmare. I felt utterly trapped and hopeless. I would get out of bed and try to push back the darkness, the images of my daughter’s bleak future. Around this time, I spoke to another mum who told me- ‘It’s the hardest thing you’ll ever do, but it makes you a very strong person’. I remember thinking, I don’t want to be a strong person, I just want to be happy. Over time though, I’ve realised that through this process that really started before Fragile X with endless early intervention, I have become… different. I expect more of myself in terms of parenting than I ever did before (Don’t we all become part-parent part-therapist?). I expect myself to do the therapy homework and research new interventions and consult with professionals and do whatever I can to help my girls. My expectations have become higher over time as I realise the additional needs and extra support my children require.


Even though I expect more of myself as a parent than I did before, I expect a lot less of myself in other ways. For me, the diagnosis deadened my ego- maybe killed it, I’m not sure- once and for all. I think that’s a good thing. I used to be so self-assured, so convinced me breastfeeding my child or not feeding them sugar would help me control their future and make them successful. I thought I had it together because my BMI was normal, and I had a lot of tertiary degrees. The worst thing was I judged others for not doing or achieving what I had. Why can’t they get it together? I condescendingly thought. I’m not sure I can describe it with words but I have undergone a seismic shift. So much has been taken out of my hands. So many things that used to matter don’t anymore, and I expect less of myself because of that.


I think I’m changing. As I listen to myself say I chip away at things with my girls I think- Who is this person? I could never stick at anything as a kid or a young adult. And I realise that I’ve become not just stronger, but better in ways that most people don’t have the opportunity to become. Persistent in a way I never thought I would be. More accepting of others. More compassionate. Because unless you are forced down this path- a path that forges you into someone different- why would you choose it yourself? You wouldn’t. And you wouldn’t wish it on anyone else. But I think that’s why most of the kindest people I know are other parents of kids with disabilities. You can grow down and grow bitter which some do, but most grow up, into something more beautiful, humane and courageous than before.


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