For the last week, every time I looked at myself in the mirror I felt like I was looking at something that the cat had dragged in. I’ve gone from tired to fatigued in a matter of days and know that my looks resemble this fact. The problem is, I can’t bring myself to do anything about it….because I’m just too tired!
So, you can imagine how much of an effort it was to summon the energy to drive our son two hours to a birthday party…only the second he’d been invited to in 10 years. Not only is it difficult for someone living with FASD to face the daily challenges this disability brings, but it’s heartbreaking for them to not receive the ‘normal’ invites to parties that seems to flood every other child their age. Thankfully, our home education lifestyle means that the lack of party invites is not something our son is taunted with, but I know it’s something he yearns for.
I have a confession to make however….I’m often thankful that I don’t need to deal with the before party and after party meltdowns. Our “normal” daily challenges take every ounce of my energy to manage, so I silently count my blessings. It’s not that I don’t want him to have fun, make friendships and be a part of those birthday party memories. But let’s be honest…can it really be all of that for someone living with FASD? Think about the food, hype, noises, party prizes (remember everyone HAS to win!!). Then add in how there will likely be some attendees who don’t get the differences, needs and behaviours of someone living with FASD.
So why was I driving two hours to THIS party? Because the family of the birthday child were bending over backwards to accommodate our son. I was asked what could they do to make it a success for him? What sort of things may trigger problem behaviours? What sort of food would be best for them to serve? THIS was not a party to be missed and this family were AMAZING!!
So, in order to drive the two hours to this party in my fatigued state…I needed caffeine. I dropped into a café where we are known to the owners and whilst my son waited outside to avoid the noise, I placed my order and stood to the side, trying to hide my bedraggled appearance. There was no chance of this however, as one of the owners came up to me and asked how I was and were we going away for the long weekend? Suddenly words about being too tired and just wanting to stay home, were blurting out of my mouth. The owner told me in a firm but caring way, that I need to take some time for myself. I’ve heard this, many times before from many people, but consider them to be just words and easy to say. As she moved off to fetch a muffin from the dessert bar, I considered that to be the end of that and I put my head down in another attempt to hide. Suddenly, that muffin was thrust into my hands by the owner who looked me in the eye and said, ”REMEMBER….take time for you!”.
This muffin that was given to me in an act of kindness, was so much More Than Words…words that I had earlier presumed to be empty and meaningless. Not only did these words take on an entirely different meaning, but the act itself brought about a change in my thinking that day. I truly realised that I DID need to take time for myself and I needed to make it happen ASAP.
I’d love to hear about an act of kindness that you have received in the comments below.
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.
Read more of Mama Maremma’s blogs
Caring for a young person with FASD can be exhausting and isolating. You are always welcome to call or email NOFASD’s helpline on 1800 860 613 to talk about your experience, discuss strategies, or to be connected with other families with similar experiences.
Eileen Devine recently published a valuable article explaining caregiver burnout and providing suggestions. Read it here.
If your child is eligible for NDIS funding you may be able to access respite services to take some time to care for yourself. There is no item listed under NDIS specifically as ‘respite’, which has caused confusion, but respite is available and is described as Supports for Sustaining Informal Supports. Read more about accessing the NDIS.