When it’s time to admit that you’re not coping
“And breathe,” my husband said to me as I rested my head on the dashboard and we closed the car door and drove away towards home. Little did I know this was only part one of what Rufus had in store for us that day. It was a simple day trip to a pub 2 hours away to have lunch with my husband’s parents and brother to celebrate his dad’s 75th birthday. In theory it was a foolproof plan: three kids, three iPads, snacks for the journey, food on arrival, a walk around a craft centre with a few family members and back home. Simple. Except it didn’t go to plan.
The journey there was fine and we arrived at the pub to discover we had an entire side room to ourselves. Perfect, in theory. He polished off his own meal and finished his sister’s all whilst trying to grab my husband’s mum’s meal from across the table which we made light of at the time but the truth was it was the kind of constant low level disaster management that makes engaging in meaningful conversation and listening attentively really hard work. He needs one to one support during meal times and his reach means he needs half a table to himself so the rest of us bunched up to protect our full plates and glasses from being grabbed and smashed. Whilst feeding Rufus and minimising the chaos we just about managed to hold down conversations across the table but the real problems started when we had the long wait between the main course and dessert.
“The cracks started to appear in the chasm between the main course and dessert. Something switched in him while we were waiting around that meant his noise level and physical response to being stuck in a room with nothing to do became beyond manageable in a public place. His dessert arrived but it quickly became apparent that even that didn’t calm him down. Food has always, always been the answer. With that not being the thing that settled him, we felt hopeless. It took two of us to get him into his wheelchair while he was doing the textbook Angelman moan making his body as straight as possible whilst kicking and hitting, all while my husband’s parents looked on helplessly, physically unable to intervene and recognising that the idyllic 75th birthday celebrations in a nice pub were beginning to unravel and look unrecognisable to the typical family.”
It was during this prolonged period of time between the main course and dessert that it dawned on me we’re not really coping all that well at the moment. Rufus is 8. He is big, strong, determined and loud. The cracks started to appear in the chasm between the main course and dessert. Something switched in him while we were waiting around that meant his noise level and physical response to being stuck in a room with nothing to do became beyond manageable in a public place. His dessert arrived but it quickly became apparent that even that didn’t calm him down. Food has always, always been the answer. With that not being the thing that settled him, we felt hopeless. It took two of us to get him into his wheelchair while he was doing the textbook Angelman moan (think ‘uuuuhhh’ on repeat) making his body as straight as possible whilst kicking and hitting, all while my husband’s parents looked on helplessly, physically unable to intervene and recognising that the idyllic 75th birthday celebrations in a nice pub were beginning to unravel and look unrecognisable to the typical family. Our goal was to take him out of the room for a walk outside because we both know being outside and moving helps. And it did. Thankfully.
After he calmed down, we brought him back, he ate his dessert, my husband gobbled his (now cold) creme brulee and we went on our way to the next part of the day - a walk around a craft centre - another part of the birthday celebrations. The only way I managed to enable my husband to spend some quality time with his parents and brother and for them to spend some quality time with Rufus’s sisters was for me to keep Rufus on the move, constantly, taking him in circuits around the craft centre in the wheelchair and removing him from shops when he tried to touch things or got too noisy. This was not a family spending quality time together. This was a family split into two parts.
Knowing we had a 2 hour journey ahead of us I needed to change Rufus before we set off and realising there was no Changing Places toilet on site I had to change him in the van, which, given his general mood of the day, involved me getting slapped and kicked and eventually getting a nappy in place only just by the skin of my teeth (not literally, but nearly).
After we’d pulled out of the car park, I had taken a breather, got Rufus set up with his iPad and we had started wending our way back up the M6, I tentatively raised with my husband that I think we need some more help. The fact that we were unable to have a relaxing meal in a pub to celebrate a family birthday without low level chaos management throughout the main course followed by two of us physically struggling to manage a meltdown of epic proportions and one of us having to leave the meal halfway through to calm Rufus down, shows me there are some gaps forming now that weren’t there before. Yes we have 6 hours a week of care through direct payments where we pay a carer to take Rufus out of the house on adventures (usually during the weekend) but I think it’s time to admit this isn’t enough.
Am I being greedy asking for even more help? Am I being ungrateful for what we’ve already got? Am I being unrealistic expecting that we’ll be granted more in direct payments and asking for another carer on top of the one we’ve already got? Or… or… am I just trying to enable us to have some ‘normal’ life experiences like celebrating a family member’s big birthday together?
The journey home wasn’t easy. Rufus continually kicked his iPad out of its holder and lost it on the floor of the van. He moaned so loudly that I had to turn up the music to drown him out. We stopped to give him a cheese sandwich which kept him quiet and content for ten minutes. But then it started up again. I decided to sit next to him for the remaining 40 minutes of the journey hoping that having me next to him to comfort him and be an iPad catcher for him would help. The reality was I got kicked and slapped for 40 minutes with short moments of respite where I tickled the inside of his right ear which, for some reason, really quietened him. I would give anything to give him the words to tell me what’s wrong but I don’t have that ability. And I wonder, even if he did have all the words in the world, if he would be able to explain what was going on with him.
So if I can’t give him the words then what can I do? I can buy him an iPad holder for the car that is ‘kick proof’. I can ask for an extra carer who can join us on family occasions and give him the attention and care that he needs. I can rethink how we do road trips and get-togethers so he’s not put through situations that distress and frustrate him. I can pack multiple cheese sandwiches for long distance car journeys. My automatic reaction to days like this are to problem solve by buying things, researching equipment, planning for how to make the next event easier for him, making to do lists but I think the most important one is this: admitting that we’re not coping as well as we could be.
Admitting that you’re not coping is the hardest part but the reality is that children change. They grow bigger and stronger, the way they respond to things changes over time, what used to work doesn’t work forever and non-verbal children have evolving needs and opinions about people and places too. But this. This is the most important: it takes a village to raise a child and I think it’s time to widen our village again.