A New Year has dawned and, according to tradition, I should make some resolutions. Quite a few years ago I successfully pulled off some New Year resolutions, but this was after years of not being successful. I eventually realised that these resolutions don’t magically happen just because it’s a new year; the clever thing to do was to make sure that I chose something that could work. However, after several years of living with the intensity it takes to care for someone living with FASD, I no longer dream of making resolutions, because ultimately they set me up for failure. Instead, during the week of “No Man’s Land” between Christmas and New Year, I look back over the year that was and think of what has worked well and what hasn’t worked so well. I think about what has helped and what hasn’t helped. After letting out a huge sigh of relief that Christmas is over, but waiting (and dreading) the New Year hype, I evaluate our strategies and therapies. I think about the relationship within our family of myself, my husband and our son who lives with FASD. Then, because in Australia we have our Summer holiday break, I try to prepare for the next year by assessing our plans and goals.
So, what happened in 2019 and what are my plans for 2020?
In 2019 we travelled far more than we have ever done & had our first overseas trip. For anyone this would be daunting, so imagine the extra challenges of a long-haul flight for someone living with FASD. A plan was put in place and constantly reviewed before our flight….we felt we had set up for the best outcome possible. Our son was all over the plan and agreeable to everything. Of course, this all changed with the constant temptation of a screen right before his eyes, beckoning him to interact with it. A huge challenge for us all, as the impacts of lights etc., from a screen impact upon his behaviour both short and long term. The outcome was a very UNenjoyable flight to our destination and even worse on return. This was certainly something that hadn’t worked well.
However, the time we spent at our destination went incredibly well. Our daily plans worked fabulously and the outcomes from that trip were brilliant. The preparation we put into investigating outings that would work well with our son’s interests and strengths was well worth it. There was only one negative incident and we clearly know that this happened after our son was exposed to flickering lights. When all the dust settled and we had recovered from the flight experiences, I can see that the overseas adventure was well worth it and the flow-on benefits from the experiences, and relationships made, have been fantastic.
Home-schooling looked very different in 2019. I reluctantly moved away from teaching our son specific numeracy and literacy skills. I realised, after many verbal outbursts, that he was not able to process the information to perform set tasks. Whilst this had always been difficult for him, I had been able to adapt and help him to eventually overcome the barriers. I learnt that even with the best strategies and support, at this stage of his life, he is unable to sort this information out (more than ever) when it enters his brain. Attempts end in frustration and verbal outbursts. It was difficult for me to completely change my teaching approach, as I felt I was failing our son.
But an amazing thing happened! Our son was able to explain to me what happens to him when he is confronted with a written task that he is not able to immediately understand. He was also able to show me a workbook that he was able to understand. It didn’t bother him that this workbook was for students half his age….fantastic!! I realised that by using his strengths and thinking about how I could incorporate these into learning outcomes, he flourished. I then become excited about the possibilities and was amazed at how he was happy to use his strengths in an educational way. He even would tell me what areas of the curriculum we were covering. Still there are challenges and not so good days….but they are way better. This has worked well.
Looking back over intense periods and the impacts of these times, I can see that I need to “stock up” in preparation. I need to stock up on our home cooked food (frozen and ready to go), a variety of strategies specific for these times and tasks completed as much as possible in less intense times. It is very frustrating when even achieving the simplest of tasks feels like climbing Mt. Everest, so my advice to myself is….prepare, prepare and prepare. Even in our organised and routine-based household, I realise that whenever I see an opportunity to “stock up”, I need to go for it. Because I care for our son full-time (including home educating), it is extremely difficult to get these opportunities.
On a positive note I have also realised that, from a lot of perseverance and advocating, I have been able to work with an NDIS planner to create a plan that helps not only our son, but our whole family. This is what care for our son should be about… him and us. The NDIS roller-coaster took its toll, but the outcome we now have is helping me to help our son.
After watching the self-care webinars from Eileen Devine, I was confronted with the realisation of how important my health was to my whole family. This was a real shock as I’m extremely health conscious, exercise regularly and perform all the advisory health checks, but with overwhelming fatigue constantly taking control of my body I knew that I needed to direct more intense care into myself by addressing many niggling health issues that I was constantly putting aside whilst my energy was directed to caring for my son. I guess it’s like the squeaky wheel analogy…you oil the wheel that makes the most noise.
I was inspired by Eileen’s webinars to put a self-care plan into place and so I began. I became excited with the prospect of ridding myself of fatigue and gaining control of my life. In the beginning, I felt like I was preparing for a trip to a spa retreat in Byron Bay, lured by the thought of peace and harmony, only to be constantly hit by intense times. I initially felt I had let myself down because I was unable to launch myself into my plan, but slowly I worked through what I could and “stocked up” as much as I could with self-care during better days. No, I no longer feel as though I’m on my way to a spa retreat in Byron Bay, but I do feel like I can get to our local Day Spa and enjoy an hour or so of pampering.
As our son continues throughout his teenage years, we constantly need to reassess our strategies and the impacts of the “outside” world on him. We know we need to limit exposures to technology but also know how hard this is in a technological world. Our long distance flight has clearly shown us how the world revolves around technology and how daunting it is to limit these exposures. We need to brainstorm and consider new and different ways of dealing with this issue, because the effects can be extremely difficult to manage.
2020 has more travelling adventures in store for us, including another long-distance flight. How easy it would be to say… never again!! But my evaluation of 2019 tells me that I have learnt so much from our previous long-haul, so I will develop a new and improved plan. Just like every other parent and carer in the world, my husband and I have the right to travel and enjoy the experience. We have the right to do all of this with our son. But to do this, we need to think differently, not harder. We need to continue to advocate for the assistance and changes that can make such a huge difference, not only to our lives as we travel, but also our day to day existence.
In 2020, I will encourage myself to continue developing my self-care plan and all this entails but work hard to not berate myself if it feels too hard or too slow. I hope to continue to embrace our son’s natural learning style of using his strengths for his education. I will gladly accept windows of opportunity to help me prepare for the intense times of our lives, in whatever form this comes and during those intense times I will try SO hard to remember the words given to me from a very wise person… “There will be better days ahead!” Self-care, thinking differently not harder, and preparation will help me to weather the storms whilst waiting for those better days. And whilst there will be better days, I know that there will also always be storms to weather. It’s the better days that I hold on to and that give me strength.
Finally, I think about the people who have been in my life this past year. There have been those who are either unable to understand the differences in our son and how that effects our whole family or they choose not to understand. But then I think about the people in my life who I know love me, care for me and accept me. People like my husband, who walks beside me on the road I travel and at times carries me when there is nothing else he can do to help. It’s these people who I choose to be surrounded by and who provide me with the courage to welcome each day, enjoy the sunrises (which I may not particularly want to be up to see) and find the strength to create the best life possible for our son and our family, as we all live with the impacts of FASD.
So, goodbye 2019… whilst you have dealt me many difficult situations throughout your time, I will remember you mostly for the beginning of my journey of self-care and healing.
Welcome 2020. I know that there will be many storms to weather during your reign, but I look forward to the better days that come afterwards. I promise to enjoy your sunrises and sunsets… even during the storms.
View NOFASD’s resources and webinars on caring for yourself.
Mama Maremma is a full-time carer for her child who is living with FASD.
She likens herself to the Maremma breed of dog who are renowned as guardians and protectors.