The title of this blog may have you on the edge of your seats, anticipating an announcement that I, Mama Maremma (MM), have joined the dedicated Girl Guides movement and am about to conquer the world with many newly found skills. Sadly, my Girl Guide days ended many years ago, although I do have fond memories of bushwalking and eating raw sausages, which did not make it to the planned BBQ. I will banish any thoughts of the possible food poisoning which may have occurred….they were certainly different times! Instead, my story is about me guiding in the ways of the world to my child, who lives with FASD, and how this is a new life skill for me to learn.
The ways of the world are of course complex and varied, so I really need to narrow this down and be much more specific. The particular “Way Of The World” I am referring to, is how to live, dress and act in such a way that does not make my child stand out to the “World” as someone who has huge behavioural challenges, impulsive behaviours, learning difficulties, short term memory difficulties, as well as many other issues that come from having FASD. As if these challenges were not enough, add in the type of clothing he wears and when it is worn. This is generally what the “World” will see first, unless he is in the midst of a behavioural meltdown, which of course takes over from every other memory that people will have.
We know that behavioural challenges come in many forms. They can be the all encompassing full-on meltdown, which often leave carers and any innocent bystanders a trembling mess at the best of times. Then there are the more subtle, but ever so annoying nudges, pinches and standing on your foot gestures, which are often not seen by others, but really challenge the most pain enduring recipient to “grin and bear it” for the sake of preventing these behaviours from developing into more intense ones. The challenge for me is how to guide my child through these times when he must be so overwhelmed and unable to express this in an appropriate way and one in which the world will not condemn him.
Impulsive behaviours are just exactly that….impulsive. I am constantly on edge, trying and hoping to be ready for the next episode of these type of behaviours, which of course, is totally impossible. Just when you think you have hit the peak, a new, unthought-of scenario occurs. An example of this occurred to me recently whilst reverse parking, with my ever helpful child in the back seat directing my every move of the steering wheel. This had been a recurring situation over several months and each time he would demand to be allowed out of the car to guide me into the park I had chosen. Firstly, the safety of this situation was not questionable and secondly, I had images of the scene that this would create for passers-by and the possible ridicule which would be directed at him. However, on this occasion, he was tired of my refusal for him to be allowed out and instead lowered his window and leaned himself out to his waist to obtain the best view of the situation. He then commenced giving his parking instructions to me, happy with his solution to “my” problem, but oblivious to the dangers and the onlookers. I promptly told him to “Pull his Head In”…..literally! My safety concern was irrelevant to him, amid his goal of assisting my parking task. For the benefit of my self-esteem, I would like to point out that my parking ability is not THAT bad. My challenge is how to guide him in making safe choices that will also not make him open to ridicule.
Sadly, our world in general will judge a person (young or old) upon their academic abilities and perceived intelligence. For most people living with FASD, this can be heartbreaking. Due to damage to their brain, they are often unable to learn in ways that society deems appropriate. Often, they do not receive the individual learning assistance they so desperately need. From the primary school years right through to adult learning, they are open to put-downs and likely to be alienated from others due to their learning differences which don’t fit our education system. My challenge is to build on my child’s strengths and create opportunities for him to learn in ways that suit him, with the goal of helping him carve out a career that is viable and allows him to live as independently as possible.
Many of you, who are parents/carers of someone living with FASD, will understand the need to be an “external brain” for the person you are caring for. For my child, I need to be his “external brain” most particularly for when his short-term memory loss is high. The moments when I most need to use this skill can only be described as tense, because my child actually doesn’t realise he has forgotten and will often become angry when I have reminded him of something and accuse me of not saying it to begin with. But if he has remembered and I have repeated it, he will also become angry, because he sees that as being treated like a baby. For any witnesses to either of these scenarios, it can be very confusing and confronting. Often people withdraw from the situation, which again is difficult for my child and the way the world judges him. A difficult challenge for me.
Then, there is the clothing dilemma. My child likes to look good and will at the most inconvenient times (such as when we are finally organised to leave the house for an appointment) preen himself in front of the mirror. However, his idea of what looks good is often at odds with what his peers would consider “good”. For example, knee length rubber boots are a fantastic accessory when taking part in puddle-jumping or winter activities in the back yard. However, wearing them to the shops in the middle of summer does attract people’s attention and comments. One older gentleman asked my child if he was expecting rain. My son looked at the gentleman as if he had gone mad and wanted to know why he would ask such a thing. You are probably wondering why on earth I would ever allow him to wear them out in summer and particularly with not a drop of rain in sight. It’s simple really and to be perfectly honest this is my greatest challenge….I really don’t care!! I am no fashion diva and comfort along with practicality are the two prerequisites I have when choosing clothing. So, if he was happy and comfortable wearing boots on a hot summer’s day, then I was happy too. So, my BIGGEST challenge is guiding him to make clothing choices that will not make him stand out to the rest of the world and make him a “target”.
So, back to that life skill I need to learn…guiding my child to learn the “Ways Of The World”. The world can be very cruel and as Mama Maremma, who is guardian and protector of my child, I guide him with his decisions and choices, to help him be the best that he can be and grow into a fine, upstanding citizen. This task is not easy amidst the resistance and opposition from him, which sucks the very strength out of me that is so needed in this role of caring for my child. Many of you who are parents/carers of someone living with FASD will right at this moment be nodding your heads vigorously in agreement.
There are many times that my heart aches for the challenges both he and I must face. If only, there was a better way….if only.
“How I wish I did not need to change my child for the world, but that the world would change for my child.”
Mama Maremma, 2018
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.