Joe and I went for that walk. I gently introduced the idea of trying for immunisations again. Joe acknowledged the need and importance of these injections – ‘But not tomorrow’ he said.
‘No, not tomorrow… soon though, okay?’
Three days and counting.
I had been to the doctor’s surgery and explained the circumstances; Joe was autistic and was struggling, the previous attempts to get these vaccinations at school had not ended well, we needed help. A vaccination nurse gave the receptionist permission to give Joe a 30 minute slot, and I felt ridiculously pleased that it was in Joe’s half term while Peta, Melody and Amos were still at school. I could give Joe one hundred percent. I began to arrange things. My plan was forming.
With three days to go, we would talk about the need to make an immunisation appointment at the doctors. I would slip it into conversation just before Joe went out for tea with a school friend, hoping the idea could sink in while he had his friend to take his mind off things. The next day I would tell him I was going to make the appointment, then pack him off to join a ‘Dungeons and Dragons’ session, again giving him time to get used to the idea without dwelling on it. Finally, the day before, I would tell him about the vaccination appointment, presenting it as just another item on a list of things to be done; the other things on the list would be things he wanted to do – buy ingredients for scones, pick up a friend, play board games.
I carried out my plans. I was so careful to gauge Joe’s reactions – on a few occasions I nearly lost him, but things were still going to plan as vaccination day dawned. Pressure thumped in my chest; the stakes were high. I had put so much thought and effort into this. I tried to prepare myself for Joe’s refusal to come to the surgery, but inside there was a flicker of hope. When I went to fetch Joe out of bed before taking the younger children to school, he was already stirring, and when I got back, he was up, dressed and had eaten breakfast. I had saved up questions on topics I knew he would talk a lot about, but didn’t want to start too early – I needed to keep his mind off the injections right up to the last minute. I waited till it was nearly time to go, began with my questions and started on his exiting-the-house routine.
I’d carefully calculated the time we would leave home – we didn’t want to arrive too early or too late. With five minutes left to the appointment, we went into the waiting room. Joe had moved on from my first prepared question and he was talking very loudly and passionately about politics. Normally I would have asked him to lower his voice, tried to change the subject, but I swallowed my embarrassment and let him have full reign – anything to get him through the next few minutes.
The nurse was a couple of minutes late – I could feel my anxiety rising but buried it deep; it was a huge relief when I saw the nurse at the door. She walked over to us… then walked on past. Minutes ticked by. I could see Joe becoming uncomfortable. I asked about his Dungeons and Dragons game the other night, about his friends, but his answers were becoming shorter. Ten minutes passed before the nurse came back. I gathered up what was left of my hope, plastered false confidence onto my face and jovially lead Joe into the nurse’s room.
She began to check with us why we had come, saying ‘So you missed your school vaccinations?’ to Joe. Alarm bells began to sound, but I couldn’t start telling her now about Joe’s previous attempts – that would only increase the likelihood that today would go the same way. She started to talk through the injections, said she’d have to go and get them and left the room. This wasn’t going to plan, and as I tried to get Joe to talk, I could see the anxiety climbing in his eyes. Another ten minutes and the nurse returned. We had eight minutes left. She began talking again. Only when Joe, clutching his shoulder, began repeating, ‘I don’t like injections, I don’t like injections,” did the nurse seem to begin to realise there might be a problem. She said something about waiting making anxiety worse, but by then Joe was passed coping. It was awful. Tears ran down his face, I tried to reason with him; he was shaking, I tried to get him to hold my hand not his shoulder; he repeated ‘no’, I coaxed – but I knew deep down these vaccinations weren’t happening today. Joe’s confidence crashed, my heart twisted within me, we were both hurting inside. Time was up. I left feeling humiliated and miserable that I had failed Joe again, and Joe was beating himself up because he hadn’t managed to do this – again. We both left the building feeling dreadful, trying to act normally.
I took Joe shopping so I could make the cream tea I had promised him for his friend, and as we pounded the aisles, I tried to talk away some of the things I’d said in the appointment in my attempt to convince him to have the injection – yes, the girl across the corridor from me at university did die of meningitis, but the risk of catching it isn’t that high; yes, you could get tetanus if you cut yourself at the wood, but the earlier injections he’d had would probably cover him. I tried to retract some of the things I’d said under pressure, mentally kicking myself for getting it wrong, worrying about what an awful parent the nurse would think I was. I felt crushed, panicky, but Joe was my priority. I tried to calm him, tried to help him deal with his feelings of failure; by the time we had chosen the ingredients we wanted, his breathing was back to normal, though he was still shaking.
As Joe picked up his friend and we drove her back to our house, he was back to normal – on the outside anyway. He showed her how to play Dungeon’s and Dragon’s while I made the scones. I was interrupted by a phone call – Peta had walked out of an English lesson in tears because of the book she has been reading in class. It is a well written book, but harsh, challenging, bleak… and the blurb specifies it is a young adult/teen book. Peta isn’t a teenager yet, but somehow because it’s on the year eight curriculum, that’s okay. A cinema would get into trouble letting an underage child into a higher rated film. My frustration simmered, but Joe was loud and laughing in the next room. He’d calmed down.
I laid the table with soup and rolls, home made scones and called Joe and his friend through from the back room. “Oh,” says Joe’s friend, “I’ve just gone gluten free…”
I wanted to cry. I sat and waited for the telephone call I had been promised from the surgery at 1:50PM. It never came.
What did I do wrong? What more could I have done to make things go well? Sometimes people suggest I am being defeatist when faced with my next challenge. But when you are the parent of an autistic child, this type of experience is not uncommon. After years of putting this much effort into a single day, I have become jaded, pessimistic, cynical perhaps. Each undertaking seems to take more effort. I don’t know if Joe will ever have his vaccinations now. It was nobody’s fault – I expect the nurse didn’t get the message about Joe and wondered why she had been given 30 minutes to give a strapping, healthy lad two simple injections; she’d probably been fitting in the extra jobs she’s been under pressure to do around us. But for me, this is just another day at the office. I didn’t write today’s blog as a massive moan, although I guess it sounds like one. I just want the exhausted carer who reads this to know they are not alone, and the daily pressure a carer is under to be understood. Most of all, I want understanding of autism to be widespread so that Joe and others like him, can have an easier passage through life.
And now, my other children get to join Joe on half term. Time to put my mind to more productive things. We have a new plan. There is a pile of pine planks on the drive and we aim to have two hundred bird boxes up in the wood by Christmas. Tape measure anyone…?