Kath Thomas, counsellor and carer, says:
My struggles as a caregiver are real and raw, however, I don't want to ever take away from the realities of how difficult it must be to live with the challenges that FASD brings.
Today, I want to share some of my journey, but please hear my heart: there's no shame or blame to those who carry the FASD burden every day.
I'm a mum to five kids, three biological and two foster children. The two foster children came into our care when they were first born. They came straight from hospital to our family.
So one of them, our son, is nine now and our daughter is two and they are biological brother and sister. And they were both diagnosed with FASD.
I could talk for hours about FASD and its challenges, but today I'd like to focus on caregivers and mental health, because as the saying goes, when mum is not happy, ain't nobody happy. And the same goes for dads, grandparents, or whatever your role is in the trenches on the caregiving frontline.
My background is in counselling, so you would think that being a mental health expert would have kept me from the struggles of depression and anxiety. Sadly and frustratingly - no. So it was quite a shock to realise that I was at a point where the counsellor needed counselling.
It is an emotional rollercoaster a lot of the time, because they can switch from being happy to in a rage within seconds so you're constantly on the lookout for what might happen or what- you know, it's trying to put out the fires before they become that raging inferno.
So, as we realise our normal is not really normal at all, it's easy to become very overwhelmed. As we look ahead at the challenges to come, it is hard not to want to curl up in a ball somewhere and hide.
There is no denying it is big stuff to deal with, and that is precisely why we as caregivers need to be vigilant about keeping on top of our mental health. My fear of the future can literally send me spiralling into depression and anxiety.
I guess I feel quite passionate about wanting to look out for the health of other carers because it is a constant, intense journey, I really want to make sure that other people are looking after themselves, like if we're not okay our kids aren't going to be okay, and it's not a short-term journey, it's a long-term journey, way past even when they're an adult, so staying healthy is really, really important for the long haul.
What makes a difference on this rocky journey? What can I do to make sure I don't sink? We need hope, because without hope we're lost. One mum suggests being okay with the fact that nothing will ever be what I imagined, so accepting a new reality and finding joy in that. Getting training, seeking support groups, both online and person-to-person. There is courage in realising your struggles and your weaknesses and choosing to do something about it.
I think what I'd like people to take away from today is that for the parents and the carers to hear that it's okay to struggle, it's okay to acknowledge that this journey is really hard, but also that it's okay to get help and that's really important, and it's essential for the journey.