I think that I would be mirroring the thoughts of many who care for someone living with FASD, when I say the last few months of unprecedented change in our modern world have brought challenges that we would never have foreseen. The additional care which is now often required around the clock, every day of the week, can suck the living daylights from your soul. Yep, Covid 19 has been a real game changer.
In our tiny part of Australia, we have been in isolation, then reduced isolation and then back to increased isolation. In many ways, the isolation is not too different to our “normal” life, as I’ve been home educating our son for many years now and we are accustomed to being together ALL the time. But the excursions our son so looks forward to are sorely missed. The nature walks with others who share his interests, the familiar faces in our lovely little town and the general relaxed vibe are amongst the beautiful experiences which are greatly treasured. Of course, everything still seems to be available in some form via technology, but for our son, not only is this no match for the real thing, but the constant input from devices increases his problematic behaviours.
In my last blog We’re All In this Together, I talked about finding a silver lining amidst the clouds. I hope that you were able to break through the cloud of difficulties that Covid 19 restrictions placed upon your lives and have found a silver lining. This may not be possible for you right now, however I’m really glad that you’ve taken some time to read my blog and I’m even hopeful that you may have a cuppa in hand and 5 minutes to yourself.
So how has life been in the world of Mama Maremma and her family? Well initially, I noticed that our son, who lives with FASD, had reduced anxiety, was less oppositional and became more self-directed with activities. There was almost no outrage and defiance over the small things and learning opportunities abounded. I had often wondered what would happen if we took our son away from all the stimulations that our modern world throws at us – if this would reduce his anxiety and frustrations, which in turn would reduce aggressive behaviours. Without having to leave home, which increases anxieties, I believe we achieved this, although not in the circumstances we would ever have envisaged. So, there was our first silver lining and I was floating high on it, even though there will always be the constant daily battles to manage his regulation and behaviours.
So, when an opportunity arose for our son to extend himself, by conducting an on-line class for other home educated students related to his special interest, it really seemed like the right time. Initially he was excited. I was excited, although careful to keep this under control….it was like a dream come true. After 24 hours of making this decision, it suddenly dawned on our son just what he had signed up to do. This would mean speaking in front of others and even though it would be on-line, it seemed way too confronting for him to achieve. That night it was not easy for him to fall asleep. His anxiety had increased to the point that he was freaking out. Finally, he slept, once I reassured him that I would contact his therapist the next day to see if we could have an on-line meeting to work through his feelings.
Over the last few years, I have developed an amazing support crew, who are so realistic in the support they offer. They have been trained to understand FASD, which has been a real game changer in our overall plan to support both our son and our family. We have had some support services in the past that have been detrimental to our son and therefore our family. I now feel no obligation to use support services available if they have not undertaken FASD training. Our son’s therapist is an important part of our support crew and, over the course of 2 years, she has developed a fantastic approach to engage our son and talk through feelings such as anxiety in a natural and unobtrusive way. So, after a chat with his therapist, our son was somewhat more willing to continue planning for the lesson and had some more ideas to work with.
A friend who is a support person and has an excellent understanding of FASD was happy to have a practice session with our son, going through things just as planned for the real thing. With the amount of preparation, this should have been plain sailing…but even with a familiar person being the “participant”, anxiety took over and our son felt unable to conduct the practice. I was not ready to say “ok…let’s forget the whole idea” however, so I stepped in and pretended to be “him” and conducted the session with our friend. Yes, the “pretend” bit was hard for him to process, but with some humour, it turned around a situation that was looking like being a “no go”, to “let’s practice some more”.
There were still some technical issues to work through, so I contacted one of our state’s Home Education committee members, who has an understanding of FASD. She was happy to immediately link up and have another practice, kindly offering her technical advice and support. Now, I was seeing an increase in confidence in our son and I was starting to allow myself to feel a little bit excited again.
I continued practicing with him and the day before the big event, we had another session with his therapist. He was still wavering between some confidence and huge doubts, but everything was set to go. Then the big day arrived, and the entire morning was spent practicing and ensuring all the information was ready and up to date. With five minutes to go, we logged in to prepare and waited until all participants had arrived, before admitting them into the session. During this five minutes our son started to panic, which increased to huge anxiety, even amidst my calm reassurance that he could do this. Finally, I brought out some humour and really re-enforced to him my belief that he could do it. I waited, holding my breath, constructing a possible plan B in my mind. Then he finally hit the button to admit participants who came into the session ready and willing to learn. I almost jumped for joy! I won’t say the session went off without a hitch, but I saw our son’s confidence gradually increase as time went on. When the session ended, he exhaled the most enormous sigh of relief and I was working hard to control my excitement and pride. This had been an amazing amount of preparation with a great deal of support, but he had done it!! I was thrilled for him.
That feeling of excitement felt so good. I felt that the hard work was over and our son’s anxiety about the subsequent sessions would continue to reduce. What I hadn’t factored in however, was all the additional screen time he had spent preparing to give his lesson. We work so hard to limit his exposure because we have had many behavioural problems, over many years, from the impacts of screen exposure. Being caught up in the intensity that his anxiety brings, and so focused on the goal of actually conducting these sessions, had temporarily blinded me to the possible outcomes that would come. And come they did. First exhaustion, then sensory overload, which affected how he processed thoughts and instructions. His spatial awareness was impacted, and he began to bump into things and misjudge where to put items, even when he had previously known where they belonged. This all led to increased anxiety which culminated in the “Big Bang” of behavioural problems, which included verbal outbursts and damage to property. I’m just going to add in a little bit of a positive here though… there was nothing physical involved in these outbursts.
With 5 more of these online sessions to go, a huge adjustment was needed to reduce other screen time before these sessions. As usual, my support has included constant supervision, but it now needed to be increased even more. I needed to do as much as possible of the online research myself, print it out for him to read and then produce a lesson from there. Regulation is always a part of our daily program, but I am searching for new ideas that just might be the little tweak that will hold the key….for now.
I still count this as a win. This would not have even been on his radar to consider at this time of his life, without the isolation time-out from society and the over-stimulation that it brings. I’m thankful for our amazing support crew who helped to make a dream come true.
So, another silver lining emerged. I hope that amidst these challenging times, you too can find your silver lining.
Read Mama Maremma’s previous blog – Silver Linings
As Mama Maremma points out, no parent or carer should feel obliged to access support from a professional or service who is not FASD-informed. One method to ensure that at least some FASD training has been completed is to ask your practitioner for a copy of their certificate of completion for the Foundations in FASD Online Course or other training.
Read more NOFASD Australia blogs
What amazing insight. Thank you so much for sharing Mama Maremma!