Lio Spinelli

Three weeks ago Lio and I went to my brother Anthony’s wedding in the Caribbean. It happened to coincide with Lio’s half-term holiday and my mother was putting us up in a nice house she had rented for everyone. Despite a bit of first-day sun burn, he enjoyed every minute of it. Tearing around the whiter than white beaches, building sand castles, playing in the bluer than blue water, he was in fine form. He even learned how to snorkel. We took lots of work with us and were pretty good at doing his speech and language exercises and his brain gym exercises. We even schlepped out his violin but he only opened it once or twice just to show aunts, uncles and cousins that he could play a bit.

He loved playing with his cousin Jordan (a few months older) as he always has done. Although I couldn’t help but get a little anxious in watching them together. When they had been together before the accident I had always marveled at how mature Lio seemed by comparison, but now the opposite seems true. He has fun, he has such tremendous, uproarious, hilarious fun with her, but sometimes he gets a bit carried away and makes a big scene of pee-ing in the pool or throwing his clothes out the window or eating leaves. He is getting better, especially with his evening bouts of euphoria which have ratchetted down several notches — and most of these antics can be put down to him simply being a six-year-old boy. The problem is mine more than his really: I just have to learn simply to not compare him and to remain focused like a laser on what he is doing well rather than what I’d like him to be doing (the music, the sense of adventure, the try-anything spirit, the willingness to talk to people and ask questions). And for all those things I am extremely grateful. He was, for instance, an absolutely ace snorkeler, doing it time and time again with real persistence and determination. He only had a few moments of fear and frustration otherwise it was pure joy. He would yell excitedly down his snorkel and point as he saw sting rays and star fish, crabs and wavy coral. If I must compare, he did this far better than any other six-year-old we saw that week.

I changed our flight to stay an extra day because Lio was enjoying it so much. And due to a booking error on Virgin Atlantic’s part we ended up staying another two days. This meant Lio got to snorkel with giant sea turtles which we found on St. John’s Island, certainly his favourite adventure of the trip. He swam all the way down to the bottom to be with them and to grab some of the seaweed that they were eating. Back on the beach he was telling our uncle Dick that he had swam all the way to the bottom. Dick asked him why. His response really threw me, he didn’t say to see the turtle or to get some seaweed but he said, “To make papa proud.” It moved me far more than I would have ever expected to hear my little boy say this. I was struck again the quality of our relationship and my influence over my little miracle. It was “awesome” in the real nature of the word and I worried a bit about using this influence in his best interest.

Back in England Lio, tanned and happy if a bit tired, spent days recounting the highlights of his holiday to his patient friends. We’ve been striving to take advantage of the good weather as well with exercises outside and lots of bike riding which Lio, up until recently, has really enjoyed. Within the past few weeks however it’s been a bit more difficult for him: one of the older boys at school had shown him a trick of taking hands off of handlebars and clapping while riding. Lio, wanting to be like the big boys, now tries to do this. He, of course, falls and scrapes knees and hands. I tell him, yell at him even, to keep his hands on his handlebars, but he just sobs and tells me that he “has to clap”, that he cannot help it. He’s finding it so difficult to override this compulsion that he now would rather not ride his bike at all. I find this terribly sad, but I think I can get him over it by just getting him on his bike again and gradually increasing the length I expect him to ride with his hands on the handlebars. He will remaster it and will enjoy trying—if only because I will be bribing him heavily at every step of the way. It’s just a matter of regaining control over his impulses. Wrestling has worked in the evenings to subdue his risky behaviour at home, and we’re working on taming other ticks. I’ve adapted one of the psychometric tests used by one of Lio’s psychologists to help in that regard: I have coloured word flash cards and I give him a set of rules which require concentration and the ability to control an initial reaction. For example, I tell him to read all the words on the cards but when he comes to a blue word he’s meant to say “red” and when he comes to a green word he’s meant to name and animal. He’s got to control his impulse to simply read all the words and simply name the colour that he sees. He seems to be getting better at this little exercise if not his real-life moments of impulsivity. In spite of his bicycle clapping issue I take great comfort in the fact that setbacks like these are now fewer and farther between. It’s five steps forward for every one step back rather than two ahead and one back.

Last week I had quite an intense meeting with my lawyers. It was our first meeting with the barrister after all of the initial reports had been submitted and all the expenses tallied. Eric, my very calm, reassuring and straight-ahead solicitor, met me in the lobby of the barrister’s nice London office. He said as soon as he sat down that the good news was that Lio’s potential claim is one tenth what he imagined it might have been when he first met us in the hospital. This is “good news” because it means that Lio’s recovery has been so extraordinary that he will need less monetary compensation. And I was grateful as no amount of money could ever compensate for the losses as they were first conceived. That was the good news. The somewhat astonishing news, is that despite all of the anguish and the tears we have endured this past year and half our situation probably does not fall within the very limited definition of “pain and suffering” established by British law. So a claim for that seems unlikely. More stunning even than this is that the maximum claim for the loss of a mother (for the entire life of the child) and the maximum claim for the loss of a spouse have been capped by British law at £5,000 and £10,000 respectively (I’ve written and you’ve read correctly: £5,000 and £10,000). Of all the things I have missed about America I am now perhaps missing its legal system most of all. There will be lots of other money though for Lio’s treatment, our loss of Sasha’s income and other things, and I’m sure we will be fine financially when the dust settles but just having these figures in front of me was a slap in the face.

Glad to have the meeting over, as if a distraction from my real job, as I took the train back home from London I put on my headphones and refocused on what I’m doing for Lio right now. I’m reading voraciously trying to get his diet sorted out. After having been told by Lio’s neurologist that what works for ADHD children might also be useful for Lio, I’ve immersed myself in nutrition and brain chemistry. Apparently, and surprisingly, most fruit, especially apples (of all things) is to be avoided in cases like Lio’s because it contains salicylates, a substance that can interfere with brain function. We’re also doing lots of brain gym exercises, in particular those which activate the corpus callosum (the structure which connects the two hemispheres of the brain and a site of some of Lio’s injuries).

On top of that, Lio’s learning lots of music, something that was recommended long ago as good for recovering brains. He’s continuing with piano and violin. In fact his violin goes almost everywhere with us and he’s really proud of what he can play. Glyndebourne, the most important opera house in Britain, is less than five miles from Lewes. As it turns out one of the tenors there, a charming and gregarious Italian named Massimo, has his daughter in school with Lio. We’ve naturally been spending a lot of time with them since they relocated here a few months ago. Two nights ago we were having dinner with Massimo, and two other Italian opera singers and a French harpsichordist from Glyndebourne. Lio insisted on bringing his violin and in-between some exquisite pasta and soaking the other two children with a water rifle he got out his violin and serenaded everyone with a perfect rendition of Twinkle Twinkle Little Star, followed by somewhat halting interpretations of Lightly Row and Song of the Wind — all met with rapturous applause. He thought nothing of it. He is so brilliantly ready to try and really does think of himself as someone who is capable of anything. We will work with that.

This entry was posted on Thursday, June 26th, 2008 at 10:24 pm and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.