Once Saimi started daycare, I could obviously no longer be her full-time carer, since she would be looked after at the daycare for around seven hours on weekdays. As a result, our carer’s allowance would drop to a lower level, although we would still have the carer’s monthly hours off available to us. When we heard that Saimi had a place in the MOVA group, I was suddenly in a hurry to find full-time work for myself, so that our income wouldn’t collapse in the autumn. Luckily, my employer happened to have full-time positions available just then, and I was chosen for one. I could start once Saimi had settled into the daycare.
Saimi’s daycare was on the other side of the city, about ten kilometres from our home, and getting there by public transport would have been slow and difficult. We didn’t have long to worry about it, though, before we were told that the city would arrange transport between home and daycare by wheelchair-accessible taxi. That was great news, of course, although we were still left wondering how the drop-offs would work once I had gone back to full-time work. Left on her own, Saimi grew anxious easily. She would start to cry and struggle, and could accidentally hurt herself. Also, when she got upset she often started coughing and could end up vomiting. Travelling alone in the taxi was therefore out of the question, and one of us had to go with her. But the taxi ride – which would also pick up another child along the way – and then the journey back home by public transport would inevitably eat up too much of the working day.
We got in touch with the city’s disability services and explained our problem. A solution was found quickly, and Saimi was granted a personal assistant for her journeys. In practice this meant a service voucher, with which we could look for a suitable provider. At first the voucher would only have covered a couple of hours, but the number of hours was extended to cover up to three hours each way if needed, since it would have been extremely difficult to find an assistant for just an hour or two at a time. I imagine it would also have been questionable from a labour-legislation point of view.
It felt unbelievable that everything went so smoothly. Surprisingly, though, the real problem turned out to be finding the assistant in the first place. I contacted every provider in Helsinki approved by the city, but not one of them offered assistant services for a small, severely disabled child. One company told me that their staff did assisting work more as a hobby or in a voluntary spirit, and that they couldn’t take responsibility for a seriously ill child.
I was dumbfounded, but after that conversation I realised that an assistant’s pay is very low, so the financial compensation wasn’t particularly appealing, and certainly not enough for a care professional. I contacted the lead social worker in the city’s disability services and told her there wasn’t a single suitable provider. She suggested we also get in touch with an association in another town called Jag Assistans (JAG), through which she knew some families had found assistants for their children. At JAG the reception was warm and the customer service excellent. They took us on as clients and set about finding an assistant for Saimi straight away.
The search for an assistant aside, the summer rolled along nicely and we focused on holidaying and spending time together. Because Saimi’s condition had been fairly stable for pretty much the whole year, we were able to visit the grandparents in Iittala more often too, and over the summer we stayed with them a couple of times for stretches of just under a week. Now that we had all the essential equipment in Iittala and a small store of care supplies, going there was relatively easy, if a little pricey, since we always had to rent a car to get there. We had already developed routines for staying at the grandparents’ and doing Saimi’s care tasks there, so changing location was no longer stressful, which it had been at risk of becoming, especially early on. In a new environment you have to more or less rethink the care tasks from scratch, and they can easily take far more time than they do at home.
We began our summer holiday, or more accurately Elli’s holiday, by going to Iittala for Midsummer. The weather was kind to us then, and we spent a lot of time lying out on the lawn with Saimi. We also went down to the grandparents’ little stretch of shore on Lake Vanajavesi, where Saimi, helped by her mother, got to dip her toes into natural water for the very first time in her life.
While Elli took her July holiday, I, for my part, went on a work trip to Barcelona at the start of the month. It was nice to be back in Barcelona, which felt like a second home town to me. Even though we had only lived there for a little over a year, I had formed a fairly strong emotional bond with the city. Perhaps it had to do with Saimi’s birth and the very intense time we spent there afterwards. For the trip I stayed at the Catalonia Atenas hotel, a couple of kilometres from Sant Pau hospital and Parc del Guinardó, where I went for a walk a few times. I also rented a bike and cycled several times up in the Collserola hills, as well as over them to Cerdanyola and back. Barcelona was, as it always is in July, stiflingly hot, and I was dripping with sweat even while walking, but the excitement of getting to my favourite places easily won out over the heat. From the tops of Parc del Guinardó and Collserola I took in the views and wondered when we might get to see them together with Saimi.
In July we spent a lot of time outdoors. When we were at home, we would usually go for at least one walk during the day in the forest at Keskuspuisto, but often both in the morning and in the afternoon. On our basic walk our route usually took us through the beautiful Maunula memorial grove, about a kilometre and a half from home. Often we would go at least part of the way along the paths, where the bumps of the buggy over roots and other ruts were a great delight to Saimi, and her giggling always set us laughing too. No doubt it looked odd to other people out walking when we deliberately steered the buggy into dips and bounced it along, using tree roots as ramps.
Alongside the walks we also went on bike rides, or pedalled over to visit my mother, where we would stay a night or two at a time. We loved spending the summer days there, having barbecues in the back garden, while Saimi was happy to spend hours on grandma’s lap on the living-room sofa, listening to the sounds of the telly or to grandma’s chatter. Before the holiday ended and daycare began, we also made another trip of several days to the grandparents in Iittala.
Our holidays went well in every respect, and we were really glad that over the summer we got to do so many fun things together. Saimi always loved having things going on around her, which is why movement of any kind appealed to her. Good company and closeness were also especially important to Saimi, and when visiting the grandparents she got even more of them than usual, or at least from people other than us, her parents, which she seemed to find refreshing. It was wonderful to see how much Saimi enjoyed the grandparents’ company and being held in their arms.
There was usually no mistaking Saimi’s contentment and joy. She communicated through sounds and gestures, and above all through a wonderfully varied range of facial expressions. When she was delighted, for example, she might let out a funny whoop and wave her arms up and down. At the very least a broad smile would spread across her face, lifting her cheeks high, so that her eyes smiled sweetly too. Her displeasure, on the other hand, didn’t go unnoticed either. A small upset pulled the corners of her mouth firmly downwards and, threatening tears, demanded our attention. Pain, discomfort or a bad mood Saimi signalled with inconsolable crying and thrashing. The crying only grew louder if help didn’t come quickly. Besides taking her in our arms and talking to her, touching her face or cheeks lifted Saimi’s mood and seemed to ease her pain too. She loved it, for instance, when I rubbed my beard lightly against her cheek. Her face was always central to how we connected with each other.
Until now, getting around outside had been manageable with an ordinary pram and, of course, the bike trailer. The pram was already getting too small, though, and we couldn’t get Saimi into a good position in it, which is why we barely used it any more. The bike trailer was excellent for outings, but it wasn’t suited to daycare use, and certainly not to the coming taxi journeys, since it couldn’t be fastened safely into a car. As this was an essential aid comparable to a wheelchair, Taru, the physiotherapist, made a referral for a new pram for Saimi. The city’s assistive equipment centre was apparently backlogged, though, and by the end of July there was still no word on when it would arrive. Luckily, we did have an ordinary car seat that Saimi could travel in.
August was upon us, and we were ready for daycare to begin.
