On the first day of August, an accessible taxi came to collect our whole family from outside our building. Elli and I sat next to Saimi in her child safety seat, and we set off towards the daycare, called Troolari (the Trawler), in the Ruoholahti district of Helsinki. When we arrived, the driver parked at the gate, and from there a large inner courtyard led through to Troolari, on the ground floor of an apartment block. At the door we were met by a member of staff from the MOVA group, Meritähdet (the Starfish).
On the first day we went through Saimi’s special needs and her care routines, and talked about things like what she did and didn’t like. One of the staff in Saimi’s group, Pia, showed us around. She apologised that the rooms had seen better days and were rather cramped. At the heart of the space reserved for Meritähdet was a quite spacious living room with a small open-plan kitchen beside it. Off the central room were a large bathroom fitted with assistive equipment and a smaller playroom with an indoor swing, a beanbag and toys. The children’s beds were in one large room, and in the little office next door there was a bed where Saimi had her afternoon naps. Each child had the equipment they needed. Saimi, for example, had her own panda chair and a standing frame at the daycare.
The premises may have felt a touch cramped, but in general I thought they were excellent. What warmed my heart most was the staffing. Having five adults for six children meant that the children’s special needs could be met and that each of them could be well looked after at all times. With children who have disabilities, that is not always the case. Because daycare in Finland is a child’s statutory right, the city is, in principle, obliged to provide a place for anyone who wants one. However, as far as I know, many municipalities do not have MOVA groups like this at all, and even in Helsinki places are limited. My understanding is that children with special needs are often offered a place in an ordinary group, where they may have an assistant with them. Such an arrangement is probably rarely in a disabled child’s best interests, and we would not even have considered it.
For perhaps a week or so, one of us spent part of each day at Troolari, helping Saimi settle into her new surroundings. For instance, on many mornings I spent an hour or two with her at the daycare and then left her in the staff’s care and went to a nearby café, from where they could call me back if needed, although I don’t remember that ever happening. When nap time came I headed home, and Elli came to the daycare in the afternoon. It quickly seemed that Saimi didn’t miss us while she was there, since she was happy in her group really from the very first day.
Elli showed the staff how to care for the stoma, as she was better at it than I was. They had little experience of stomas, so that was something of a worry for us in the beginning. The baseplate held in place fairly well, though, and rarely leaked unless the replaceable bag attached to it came loose. Once daycare had started, we checked the stoma each morning and changed the baseplate if it looked even slightly as if it was loosely attached. In the first few weeks, I think, Elli went to the daycare a few times to reattach the baseplate and to show the staff how to handle it, but for the most part the stoma too was managed well, because the staff usually only needed to empty the stoma bag.
We still hadn’t found an assistant for Saimi, so after the settling-in week I mostly travelled with her in the taxi. In the morning I went along to the daycare and took the bus back home. In the afternoon it was the same thing in reverse. The journeys ran smoothly, and the taxis set off exactly as arranged. Saimi’s transport was handled, as a rule, by the same skilled drivers, which was a very good thing. Beyond the safety of the driving and the transport itself, what matters is how the driver treats a disabled child and their parent or escort. Especially if a child travels alone – as most do – in the taxi, reliability is of the utmost importance, because a parent is placing a wholly dependent child in someone else’s care.
On the taxi rides I sat beside Saimi and talked to her non-stop, or else we listened to children’s songs on my phone. As I recall, a Finnish children’s song called Pikkuiset kultakalat (Little Goldfish) and the Finnish version of The Wheels on the Bus (Bussilaulu) were already among Saimi’s favourites back then, and we played them again and again. While the car was moving Saimi was usually content, but when we stopped, for example at traffic lights, she quickly got upset. Rocking her seat and, above all, giving her water from her bottle helped to calm her. Once I did not manage to pacify her, and she was crying a little as we arrived at the daycare, but she settled immediately when Elina, one of the staff, took her into her arms. After seeing that, it felt easy to leave Saimi in their care and head home myself.
We had already been looking for an assistant for Saimi for several weeks through the JAG Assistans organisation, but not a single application had come in. The situation was beginning to look hopeless. Then one day it dawned on us that an assistant didn’t necessarily have to speak Finnish: with Saimi, things like touch, tone of voice and gestures were more important means of communication than words as such. It would be enough that Elli and I were able to talk with the assistant. We told JAG this and posted the job advert in English as well. Very soon we had the first and only enquiry we would need.
We invited the candidate to our home to meet Saimi and to talk about what the job involved. The person who came to see us was a young woman, Renuka, who had moved to Finland from India just about three months earlier with her husband, who worked for Nokia. We went through the assistant’s role in English, and Renuka didn’t seem fazed by Saimi’s special needs or the things that came with them, such as the stoma or the central venous catheter hanging from her chest – things that could understandably be a shock to many people at first. Instead she took Saimi into her arms, where Saimi sat perfectly content. After the meeting Renuka was still interested in the job – and it took us no time at all to decide – so from early September she travelled with Saimi to and from the daycare.
In the mornings we did the usual routines ourselves: we finished the intravenous nutrition, unless it was a night off, checked the central venous catheter, did the stoma care and a light wash, gave her medication and fed her. Renuka arrived maybe twenty or thirty minutes before the taxi came and helped with things like getting Saimi dressed. In the early days she also stayed on at the daycare for a while to help, even though it wasn’t part of her job, which said a lot about how motivated she was to be with Saimi. In the afternoon, likewise, Renuka went to the daycare in good time and came home with Saimi, after which she would spend some time with Saimi before ending her shift. Things went wonderfully with Renuka from the very first day, and we were truly glad to have her as Saimi’s assistant. Later, we arranged it so that she could do the informal carer hours as well, and now and then, once Renuka’s assistant shift had ended, she would stay on for a few hours to look after Saimi.
In early September we were finally able to collect Saimi’s new pram from the city’s assistive equipment centre, where a physiotherapist adjusted it to fit her. Thanks to the individual adjustments, she had a comfortable and well-supported seated position in it. As well as helping to get around in general, the pram also made Renuka’s job easier: instead of carrying Saimi about in her safety seat, she could now put her in the pram at home and push her straight into the taxi. In the car the driver secured it to the floor with four straps for the journey, and Renuka sat next to Saimi on the seat. The pram had been eagerly awaited at the daycare too, since until then they had had to take Saimi outside in her old pram.
The daycare, the taxi journeys and Renuka changed our daily life significantly and made it run more smoothly. It also seemed to us that, soon after she started daycare, there was progress in Saimi’s development. These weren’t great leaps, but rather tiny steps forward, in her communication and interaction. Indeed, Troolari offered excellent conditions for her development: throughout the day there was, for instance, plenty of shared activity, with both adults and other children. There was no way we could have provided all of that for Saimi at home ourselves.
At Meritähdet each child had their own ‘daycare diary’. It was a large calendar in which the staff wrote down the day’s events and news, and through which messages also passed back and forth between home and daycare. That book travelled with Saimi in her lovely pink Minnie Mouse backpack, and through it we could follow how her days at the daycare had gone. The group’s mornings began with a morning circle that included singing, which Saimi especially loved. Over the course of the day they got up to all sorts of games, reading books, crafts, listening to music and singing. They also went outside often, at the very least in the daycare’s neighbourhood, and at the end of the week, on Fridays, they made longer adventures, such as taking the metro to the Oodi library in central Helsinki, going for long walks in the parks and along the seashore, visiting different playgrounds and taking part in all kinds of children’s events.
Meritähdet was fantastic in every way. I believe it was a good place to work too, since the same people had been there for well over ten years. All the staff in Saimi’s group – Elina, Eliisa, Pia, Reetta, and early years teacher Sirpa, who joined them later – were warm-hearted and caring people, so we could always leave Saimi in their care with complete peace of mind. The practice was for each of them to be responsible for a particular child on a given day, with the rota changing daily, so that every member of staff came to know every child well.
Saimi quickly took a liking to every one of the staff and was thoroughly happy in their company. And for Saimi, of course, part of what made daycare new and lovely was getting to play and spend so much time with other children too.