This New Life

When I published my last article in August I had no idea that I would go quiet for so long. I am astonished how much time has passed and how quickly. I needed that time; so much has happened, it’s been a period of endings and beginnings and I’ve needed time to absorb it all before I could come back and tell you all about it.

In August we had our six weeks of school summer holidays. Unfortunately the weather was not conducive to many trips out, being mostly grey, cool and frequently rainy in our part of the country. It lent itself better to snug days at home, Thomas lounging in front of the DVD player or fighting enemies on his Wii and me taking long lie-ins and streaming programs on the laptop. Nevertheless we did poke our noses out occasionally. We managed to time a trip to the coast on one of the few truly glorious, dry and sunny days, for fun with sandcastles and an overnight stay.

We travelled down South to visit Tom’s grandparents, with several trips to the park across the road culminating in a video he had me make of him using all the play equipment, with practice runs and walk-throughs before the final version, auteur that he is. The final cut is on his Kindle for him to view whenever he wishes. From there we went on to London to visit my sister, where we three enjoyed a day trip to the National Army Museum, passing the Royal Hospital Chelsea on the way and spotting a Chelsea Pensioner, the highlight of Thomas’ day. Seeing a real, live veteran in his scarlet uniform was hugely exciting for him.

..there will always be something that doesn’t meet Thomas’ expectations and sometimes the thing that doesn’t meet Thomas’ expectations is Thomas himself.

Tom is very keen on all things military and he was particularly absorbed by the museum mannequins in their different uniforms and the display of equipment that goes into a soldier’s pack. As with all things, the trip did not go without the odd hitch; he became frustrated and tearful at not being able to create a clear rubbing of a military insignia, he agonised over what to write on a poppy to display on a wall of remembrance, he became frustrated over his writing on another poppy and spent so long starting again with several poppies that in the end I insisted on moving on which made him upset and anxious about abandoning that task. These small hiccups serve to remind me that no event can be enjoyed entirely without incident because there will always be something that doesn’t meet Thomas’ expectations and sometimes the thing that doesn’t meet Thomas’ expectations is Thomas himself. But such is autism and we persevere.

In late August we ventured out to a rare party at a friend’s house and for the first time ever I was able to lower my “alert status” and let Thomas do his own thing without worrying that he might wander off or get into difficulty with other children that he doesn’t know. He joined in their games, occasionally running past in a sweaty mess, and I carried on chatting to the friends I hadn’t seen in several years. A couple of times in the evening I popped into the house to check that he was getting on okay as I hadn’t seen him for a while and of course he was. It’s hard to convey the freedom and relief and gratitude that I felt that day; my son was doing what other boys do, playing with other children without needing my interpretation or assistance or monitoring. I have been quietly in the background, ready to assist or to intervene, alert for trouble or upset or escapes, since he was born. That night I was able to finally let go of the invisible reins. A burden was set down, if only for a while. Safe amongst friends, I was able to concentrate on being Me, not Tom’s mother and trusty aide, and Tom was able to be his independent self. The mental freedom was overwhelming. I hadn’t realised how much I missed laughing with friends and being someone other than a mother. I recovered part of me that had been lost for a long time. It’s so hard to explain how much that meant to me.

at present we are on a streak of losing a water bottle approximately every other day, he’s lost two anoraks, a set of trainers (sneakers), a reading book, his original school tie (he had to buy a replacement), several components of his stationery set and his thesaurus

Then came September and that day, the Big Day, the first day at secondary school. Thomas’ secondary school refers to itself as a High School, a relic of an old system incorporating primary, middle and high schools, although children now progress from primary to secondary school aged eleven. On Tuesday 5th September he put on his new school uniform and we walked up the hill to High School, the self-titled “Special Boy of the School” so tall and confident in primary school now just another member of the new cohort, starting out again at the bottom, so small and inexperienced. Even though he had been through two weeks of an induction before the summer holidays he was nervous that first day. This time it was Real, no going back. Of course he had a fantastic time and all those months of agonising over how he would fit in and cope with the demands of a stricter and more demanding routine were unfounded, as I had hoped they would be. At the end of his first week the school even sent him one of their official “Well Done” postcards through the post! In the following months he has made friends and fit in superbly, finding friends to walk to school with occasionally and even crossing the busy road at the bottom of the hill when he’s been let out early, catching me by surprise before I can get to our meeting place. As you’d expect there have been challenges; at present we are on a streak of losing a water bottle approximately every other day, he’s lost two anoraks, a set of trainers (sneakers), a reading book, his original school tie (he had to buy a replacement), several components of his stationery set and his thesaurus (I gave him my old school one as a replacement). I admit to shouting in frustration at first but now I’ve given up nagging and accepted that this is part of his development from small boy to independent pre-teen and that he will have to develop greater awareness and responsibility himself. This is the first time he has had to take care of his own things without a full-time assistant. He is still adjusting to the demands of a complicated timetable and carrying so much equipment with him. As with everything else in his life, he will get there. It will just take him a little longer and we will have to accept some hiccups on the way. As Thomas learns to adjust, so do I. As with the party in August, school is another area where I need to learn to let go and let him find his own way, even if that means learning the hard way. It’s part of life and we all go through it, he is no exception.

In late September I joined a gym and started prioritising my fitness and health. I signed up to the Betty Rocker 30 Day Bodyweight Challenge (I saw it advertised on Facebook) and completed 30 consecutive days of workout circuits, losing inches from my waist and hips (and sadly my bust!). I’ll write about this in greater detail another time but I’ll just say that now, in early November, I do feel a higher level of self-respect, confidence and health both physically and mentally than I have done in years. It’s been good for me to join classes at the gym, to break out of my tiny circle of home-shops-school and to meet new people, to challenge myself physically and socially. I cannot emphasise enough how positive this simple decision has been for my mental health as well as my fitness. I began a fitness regime that turned into a hitherto alien lifestyle of yoga and gym and home workouts and smoothie making and active wear. It’s all still new and fun and of course I’m enjoying watching my body change.

We bonded again, all cares and responsibilities forgotten.

During the half term holidays we went out on the one sunny day of the week to a fantastic display of animatronic, life-size dinosaurs visiting a nearby park. The photos and videos were amazing, although Thomas found the roaring too much for his sensitive ears and so I was dispatched to do the documenting. It was a glorious day of fresh air and hours of walking under azure blue autumn skies, excited child at my side. We bonded again, all cares and responsibilities forgotten. On the way home we pretended we were explorers who had gone through a time vortex and were trying to find our way home before the dinosaurs could eat us!

Then there was Halloween. Tom put up his customary display of spiders, beetles and skeletons and other scary things in the front garden, his Dad carved the pumpkin and we went trick-or-treating. This year we ventured into the next street as well. They had some fantastic displays and he was very pleased with his haul of sweets. As usual, his costume was minimal as he does not like to change his appearance: Dracula’s cape and some vampire teeth were sufficient. I dressed again as a witch, as instructed of course.


Finally, Guy Fawkes’ night came and went. For the first time in years I failed to buy the fireworks in time; they all sold out before I could get any and so we didn’t have our little private garden fireworks display. I thought Tom would be bitterly disappointed at the breaking of a family tradition but he surprised me with how little he was troubled. Perhaps the timing was good, as Halloween had fallen earlier in the week and the joy of that was still fresh in his mind. We live in the suburbs and we were able to see the shooting rockets from several large public displays from our windows, as well as lots of private fireworks parties, so he happily sat in his bedroom and watched those until the novelty wore off and he turned on his Wii. Once again, he surprised me with his maturity and acceptance.

It’s a crazy see-saw of childhood and maturity. It’s disorienting and joyful at the same time.

My son is growing up. I keep being surprised at that although I know it’s happening all the time. One minute he’s running through the house, squealing with excited fear as Mum Zombie shambles after him up the stairs, groaning and threatening to eat him. The next, he’s discussing neutrons and electrons and telling me about the poets of the First World War. It’s a crazy see-saw of childhood and maturity. It’s disorienting and joyful at the same time. He’s coping, he’s really coping. Life goes on the same as ever, with holidays and day trips and school and family traditions, and yet it’s all slightly different. This year we levelled up somehow, quietly and gradually, so gradually that I didn’t even notice. And here we are, in this new life; older, fitter, more mature, more capable, more experienced, more confident, facing new challenges and coping, he and me alike. We’re both learning still. I don’t think we’ll ever stop.

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