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. She made the choice to home school her son, finding that this is the best arrangement for him and for their family. In her blog below Mama Maremma generously shares some insights from her family’s journey.
We understand that many families are struggling with school closures and increased pressures at home. Please remember you are not being asked to become a professional teacher. One school principal wrote to parents and carers, saying “Stop Trying to be Superheroes”, and reminding families that “your child may forget (or even refuse to do!) the learning activities or school work provided by our teachers for supported home learning BUT they will remember the fun new things they learn and do with you – the cuddles while reading, the measuring & counting while cooking, the gardening, the creating, the dancing, the games – and how you made them feel over this time.” Read the full letter here.
Silver Linings – Mama Maremma’s blog
You will be reading this blog during the uncertain era of COVID-19. In true Mama Maremma style, I’m still guiding, protecting and managing our son who lives with FASD, and I know that just like me, you will be having difficulties with the many, many cancellations, postponements, adaptions and changes. I feel your despair, loss, frustration and fear. For many of you, the person you care for, who lives with FASD, suddenly requires 24-hour care. Family members are either always together or together much more, depending upon work circumstances. Supports may not be available or are different. Either way this is a change, so they present their own challenges. Then as parents there are our own feelings of anxiety, which we are desperately trying to contain as we continue to prop everyone else up, because we know that if we don’t, the outcomes aren’t pretty. All these things create so much more pressure on us, which is of course on top of the extreme challenges we face in our “normal” daily lives.
Many of you (if not all) will be nodding your heads in agreement and maybe you might be asking why you need to be reminded of these dire circumstances we are all facing. But, what if maybe, just maybe, this COVID-19 cloud (or storm!!) can have a silver lining? Maybe I can help.
For just over nine years, I’ve been home-schooling our son (we actually like to call it Home Education), which looks very different to the Learning At Home curriculum that many schools in Australia are currently either delivering or preparing to deliver. This means that I have spent enormous amounts of one on one time with our son, during which I educate him, provide support, therapy and take him on LOTS of excursions. Despite many of the posts that are currently being distributed on social media, which portray lovely, happy families enjoying special time and activities together whilst Learning At Home, the real home-schooling day for a young person with FASD is far from this. I have endured many challenging and heartbreaking days over the last nine years. Some days I’ve retreated to my bedroom and curled up in a ball. I’ve felt like an absolute failure from what I thought were mistakes and the constant challenge of engaging our son. This is where the silver lining stuff starts… hang in there!
So, by now you know that spending so much time with a young person with FASD is hard. You also know that trying to educate them is hard AND that mistakes are inevitable due to their differences in learning styles. Over the last couple of years I have made a change to my thought process when I make these mistakes, which has made a huge difference in my life. Instead of thinking of these moments as “mistakes”, I think of them as Learning Opportunities. I no longer shame myself by labelling these moments as mistakes, in fact, I work extremely hard to not use the word…even in my head! They are instead, amazing opportunities.
One such opportunity came after a continual refusal by our son to engage in any school work. According to him, it was all stupid! It created many behavioural issues and I would constantly be annoyed with what I saw as mistakes in the way I was delivering his education. Reflecting on how I could turn “mistakes” into learning opportunities, I thought about how I could engage our son; what would encourage him to do ANY form of school work? How could I make him want to be involved??? I can’t remember exactly how the light bulb moment happened, but I suddenly thought, “What if our whole curriculum revolved around his strengths and interests?”. It worked!! Our son now has an Individual Learning Plan that changes so constantly to fit his strengths and interests, that it rarely stays static for more than a week. What I personally can’t fill his needs with, my husband steps in to help with. By no means do I suggest you toss out your school’s curriculum, but think of all the gaps you will have to fill in once Learning At Home time is finished. Think of your child’s strengths – what are they good at? What can you do at home that can use the ability of this strength? What about interests? This is a perfect time to become “interested” in your child’s interest yourself, which I know can be extremely hard when you don’t share the same passion. Maybe this could be the time to start your own acting classes…on the job so to speak!
Another silver lining is the opportunity to think about management strategies. As our children become older, their circumstances change and there are stresses beyond our control. We all know that some of what worked yesterday will not work today. With all the time I spend with our son, I have a unique opportunity to observe his behaviours throughout the entire day, which provides me with lots of information about what can trigger, escalate or calm him. It can also be very difficult and stressful, as inevitably every behaviour will have an impact upon me. A huge part of my journey, as a parent of a child with FASD, has been learning how to manage our son’s behaviours with what I call “Reassuring Strength”. Recently (before COVID-19 restrictions), we attended one of our regular Equine Assisted Therapy sessions. We’ve been attending these sessions for about seven years now, which speaks volumes of its success. No two sessions are anything alike, but as these horses have been rescued and are being taught to trust again, each session always has a valuable take home message. This particular session was with “Billy” and what we took home that day was a lesson that will stay with me forever…
The Equine Assisted Therapy coordinator is “John” (not his real name) who founded the program in 2005, which is based upon the Monty Roberts methods of horse education and training. The program works on developing trust, respect and partnership between horse and human…. you are probably already sensing the similarities for parents and carers of someone living with FASD.
At the beginning of the session, John led us out to a paddock where he was going to demonstrate catching Billy to bring him into the Round Yard to work on some anxiety de-sensitisation. Billy however was being defiant and tried to provoke John with his rebellious behaviour. His body language was saying, “Come on…try to do something about it!”. But John showed strength by placing his body in a stance that said, “No! It’s not ok what you’re doing, but I’m here for you”. John was strong, but not forceful. A cycle began of Billy taunting John, but John consistently giving the same message, “No! It’s not ok what you’re doing, but I’m here for you”. John’s message did not waiver. Gradually Billy sensed that there was no danger and was then curious about what would happen if he came closer to John. John was consistent with his responses. Finally, Billy approached John, who then calmly turned and offered Billy a reassuring but firm pat upon the nose. Billy accepted…the first stage of trust had begun.
There are so many Parallels in this story to our personal life and I’m sure there are many of you who will also relate to this true analogy. I came away thinking of how much better the outcomes are when we show the same reassuring strength to our son, just as John did with Billy. This management is not excusing the behaviour, but instead is saying that no matter what, we’re going to stick with you and work through it. Trust us!
I share these thoughts with you not as a therapist or professional, but as a parent who has cared for our son 24/7 for the last 15 years. These are my hard-earned experiences that I hope will in some way give you, my fellow carers, a glimmer of hope whilst you spend much more time with your children living with FASD than you have before.
I wish you all the best during the COVID-19 storm and remember…Every Cloud Has A Silver Lining.
Read NOFASD’s coronavirus blog, which includes hand washing visuals and home schooling resources
Read more of Mama Maremma’s blogs