Having an autistic child in the family means that life is never predictable but this last week has thrown us a few extra loop-the-loops in roller-coaster ride.
Monday:
On Monday I had a call from school to say that Toby had managed to peel an adhesive drug patch off of another pupil and had chewed it. The drug patch is designed to deliver a slow steady dose through the skin over a 72 hour period and is not intended to be ingested and as Toby had given it a good chew for a few minutes or more he'd obviously swallowed most of the drug. The school nurse suggested I call our GP for advice so I phoned the GP but the receptionist could only take a message and suggested I call 111. NHS 111 wouldn't give me advice as Toby wasn't with me so I called the school nurse back to explain that I could get no advice. By this time Toby had started to have a reaction to the drug and one of his pupils had fully dilated. The school nurse then decided to call the National Poisons Information Service at Guy's hospital who were able to confirm that based on Toby's weight and the dosage of the patch he had not consumed a toxic dose but that it would be good to take him to hospital as a precaution.
Hospital for an autistic child is a deeply stressful, unpredictable and frightening place, especially for Toby who has had a bad experience. When he was six I took him to A&E as I was worried about a non-blanching rash he'd developed after a high fever and throwing up. It turns out that he'd just burst a load of capillaries from vomiting violently but at the time I was worried about meningitis. Despite thinking that he did not have meningitis the pediatrician insisted on taking blood to run cultures on but it took 4 adults to hold Toby down in order to do this. They pinned each of his limbs and he screamed until his tongue turned blue and I was crying and begging them to stop and it was the most stressful and frightening experience of my life. I vowed at that moment that I would never again take him unless I was sure that he was in danger and so (based on the information from Guys hospital about the non-toxicity of the dose) I brought him home, gave him plenty to drink and watched him like a hawk. By evening his pupil had started to shrink and he was calm and behaving normally but even so I decided to sleep with him so I could watch him all night. Having read up on the drug since I've found that even a small dose can have serious side effects (although rare) including hallucinations, heart problems and anaphylactic shock, so we were lucky that Toby only had a mild reaction.
Tuesday:
By Tuesday morning his pupil was normal, as was his behaviour, so I sent him in to school. The day was a hugely emotional one for me as I attended the funeral of a fellow mum who I first met when Amy and her son were in the same class at nursery. Her second son is the same age as Toby and she and the boys came to tea a few times when the children were younger. Around 7 years ago (a year or so after the birth of her daughter) she was diagnosed with breast cancer but she had successful treatment and, being who she was, took everything in her stride and carried on with devoting herself to raising her family. But last year the cancer returned with a vengeance and she eventually lost her battle with it in late January.
I've not been to many funerals and those I have were for elderly relatives who had lived full and long lives. To attend the funeral of a friend of your own age, with three young children makes you take stock of your own life, re-assess your priorities and remind yourself to appreciate all that is really important in life. The service had a very large attendance, outside of her family and closet friends there were many, many mums who had got to know her through the many different aspects of school life that she involved herself in. We each took a flower to lay on her coffin as we filed out after the service and it was very moving to see all of these individual blooms and sprigs representing the love and friendship that everyone felt for her. The wake was full of chatter and laughter as we sat and shared memories of how she touched our lives while a screen on the wall flashed up a stream of pictures of her from childhood to parenthood. As we left we were each given a pot of narcissi to plant in our own gardens (she loved gardening and had created the most beautiful space for her family).
Wednesday and Thursday:
I spent Wednesday quietly, thinking lots and doing a little knitting.
When Toby arrived home from school I could tell at once that he wasn't well. He was huffing and puffing and looked pale but flushed at the same time. The thermometer confirmed that he had a temperature of 102 and I got him into his jammies, dosed him up with calpol and settled him in the sofa bed. As is usual with Toby his temperature spiked at around 103 and he had shivers which always make him giggle! I spent the night with him again (as I always do when he's unwell) and on Thursday we watched Cbeebies and had a quiet day together. By Thursday lunch time to fever had gone and he was hungry. He was increasingly active throughout the rest of the day and ate a big dinner. So it seems like he just had one of usual 24 hour bugs.
Friday:
After a goodish-for-Toby nights sleep I sent him in to school but ended up wishing I hadn't as he chewed a drug patch again! I'd hoped that some lessons would have been learnt in school and measures put in place to ensure that the same thing couldn't happen in future, so it's deeply worrying that he was able to do it again. At least this time he'd only had it in his mouth for a few seconds and he didn't seem to have a reaction.
I'm pondering what to make of such a week and I can't help feeling like there is something necessary for me to learn from these out-of-the-ordinary experiences. For the last few weeks I feel I've been chasing my tail, trying to keep on top of a growing list of undones and tearing around trying to cram too much in. I've often been feeling hassled, frazzled and a bit grumpy. So maybe it's all about embracing the thoughts that came to me after my friend's funeral - value each day and be thankful for what you have, right here and right now.
