(Post 1 of 2 about our respite weekend)
Respite. To be honest, I never got it. Until we got it. And now I see just how important it can be. I am typing now on a Sunday morning, in a quiet room lit by Christmas lights. The dog is snoring by my feet. My cup of coffee is nearly finished. Thoughts of a second one are tickling the back of my mind in a lazy, vaguely defined sort of way. It’s the second morning in a row I have been able to slowly wake up. I actually slept until 8.30 am today (if we don’t count the 5.30 am hiccup of the dog demanding to be let outside). We had a nice dinner on Friday night. We spent Saturday with friends, shopping and dining at a relaxed pace – making some spontaneous decisions, getting sidetracked once in a while in a very pleasant and refreshing way. I spent hours wrapping some presents. We went out with friends to a local pub and stayed until the chairs were put up on the table, just like those student days.
Respite always sounded clinical to me, legalistic, some ‘demand’ that people make who have been engaged closely with ‘The System’. And for some, it is those things. It is a right. A break provided in recognition of the important role caregivers of various sorts take on.
But we never saw how it applies to us, too. We are parents. We ‘soldiered on,’ as the Brits like to say. We pushed through the tiredness, the diminishing energy reserves draining our patience and our resilience. We just did it, because that is what we do. That is what parents do for their kids. For ever. That’s the deal that we signed up for equally with our birth son and when we adopted our youngest son. It doesn’t matter that our youngest has Fetal Alcohol Syndrome, he is our child and we are his forever, no matter what life throws at him or us. That’s the deal.
But there we were having a spontaneous meal with a friend and our older son. We were thoroughly enjoying the novelty of eating a huge bowl of sloppy Asian noodles with chopsticks, focused completely for that moment on the awesome young man our eldest has become, sitting at the restaurant of his choosing (one that did not have to have cheesy macaroni on its menu). Then the next day, my husband and I were browsing slowly through a familiar shopping mall, the scene of many a meltdown, humming along to Christmas music piped through the speakers and not worrying if it was too loud. There we were sipping Prosecco and I found myself actually feeling festive. We felt ourselves lighten, interacting with our friends more freely than usual. Our parental radar was given a rest, not constantly pinging, trying to see what was happening and whether anything was likely to slide into chaos within moments.
I feel rested, revived, grounded again, and so ready to give our youngest a huge hug when we pick him up in a little while. I am ready. I miss his bouncy smile at 6.00 am. I miss his cuddles and random I-love-you-Mums. I miss seeing him upside down on the couch searching for music on his phone. I miss his dance routines in our living room. I miss him. But the part of me that loves him most is so happy for him and his independence this weekend. I know he has had a blast, spending time with his auntie and grandmother – who have kept him engaged and active baking gingerbread, digging in the allotment, walking through fields and by streams, singing and dancing, and other normal activities slightly tweaked to make them enjoyable and do-able for him. And they have gained new confidence in their interactions with him, they have gained new experiences, they have already offered a next time. As an experiment, it has worked wonderfully…
…but only after I made myself more vulnerable, which is not an easy thing to do for someone who prides herself on being ‘together’ and ‘in control.’ This weekend came after I very clearly and directly said to our closest friends and family that we were struggling this month. Proud though I am, at a moment of deep angst, I wrote on Facebook that I was tired enough to admit that we need help. I did it then on purpose because I knew once that moment passed I would not allow myself to admit to ‘weakness’ like that. I had thought it was obvious. I had thought people closest to us knew. We have been more open about our family’s struggles. But it took my being very direct, and within hours the offer of this weekend of respite was made. Another very direct (and difficult for me) conversation with some family members opened the door a little more. “Let us know when you need help,” they said. I said, “We always need help. Just assume we need help. When it gets most difficult we are so focused on getting through the day we don’t always have the energy even to ask.” And then I got specific. The biggest help is to call and say, “Would it be okay to take the little guy to the playground for an hour?” “Do you think the little guy would like to go for a hot chocolate?” Just an hour or two here or there, giving us space to reset and reinvigorate is the most precious thing anyone can do, in my opinion, for someone raising a child with special needs.
I have carried with me heavily for many years the comment once made when I was complaining about things being difficult, “Well, why did you have kids then?” I have been feeling like I have no right as a parent to complain about the need for ‘respite.’ But now that we got it, I get it. And if you love and are caring for a child with FASD, you need it too. If someone in your orbit has a child with FASD under their care, please know they may not ask, but they need it. Even an hour matters. Don’t wait for them to ask. On their behalf, I am asking you now. Admitting we need respite – a break from something difficult – does not mean we do not love our children. It doesn’t mean we don’t want to be with them. It means we are better able to be the parents we want to be when we can recharge our own batteries, clear out the cobwebs, and just turn that radar off for a little while so we can hear our own heart beating strongly for the children we love so much.
Respite (verb) – to to grant a temporary period of relief, guest blog by the Auntie