A couple of years ago, when my children were still in pre-school here in Sweden, I was introduced to a new word. I think I noticed it thanks to my autistic son “Gubby”. He expected the same people to be at the pre-school every day, and when they were not, it made him upset. Especially when it said VAB under his favourite teacher’s photo, on the entrance notice board. In the end I had to humiliate myself and ask on his behalf, “What does VAB mean?”. I was quickly informed that it means Care Of Sick Child (Vård Av sjukt Barn).
I can’t say that I feel too excited when I find out that one of my autistic boys’ teachers or assistants are home with a sick child, since it means upheaval for them. And it means dealing with people I am not used to deal with, people who know nothing about my sons’ problems. But on the other hand, teachers and assistants are only human. They are first and foremost mothers, fathers, wives and husbands. As it should be. So, VAB is a nuisance to live with. Until you need it yourself. And can’t have it. Then you get really mad at all those days, that teachers are off on VAB.
Ordinarily when one of my children are sick, it means that the child has to be carried out to the car with a bucket in hand. And all the rest of the passengers in the car, hope that if the child vomits, we will all survive the ordeal of smell and mess. I am forced to do this several times a day, since the boys can’t get themselves to school. But Monday, we faced a new situation.
Friday, when I fetched “Gubby” (who attends grade one at a Montessori school in our neighbour village), I found him laying down on a garden wall. Head on his assistant’s lap. When I felt his forehead, he was not hot but he said it hurt inside his head. Now, my son not only has autism, he also has severe language disorder and his right kidney does not work more than 10%. We drove to “Boo’s” school and I could see in the rear view mirror that “Gubby” was fighting fatigue and looking miserable. He did not want to walk in to fetch his brother, which he always does, since he is afraid of sitting alone in the car. That means that he really felt pits. That afternoon, he slept on and off, but when it was time to go to habilitation for our weekly bathing session, he wanted to go. So, we thought that the paracetamol had solved the problem and that the assistant must have been correct, when she said that he probably had just had too much sun.
After our “swimming”, we headed to the mall so I could look at what remained of the booksale, since the price of the remaining books was now 50% of the sale price. But poor “Gubby” just sat on a shelf and started to complain about tummy ache. I asked him if he was hungry, but he said no. On the way home, we stopped at the big arches, since the boys thought they deserved that, with their sister in Rome, Italy! But little “Gubby” did not want the cheese burger he had talked about all morning. He only wanted something to drink, so no toy for him. And at 08:00 the next morning, he woke me up asking for medicine, since his head hurt so bad. I gave paracetamol and went back to sleep, since I had sat up watching TV too late, the previous evening. At 09:00, I put out my hand to touch my son and he felt like a hot kettle. I rushed up and got the thermometer and with paracetamol in his body, he had a fever of 39 degrees. On to the phone of course. T. called the general number and became number 27 in the queue and then moved on to become number 32! Swedish health care for you. They can not even get the telephone queues to work. I called another number, was connected to the hospital and they wanted me to come in, since he has autism, which means he can not really explain how he feels, and he has a sick kidney. They just wanted to make sure it was influenza and nothing else. This was 09:00 and the first appointment available was at 16:30.
It was influenza, but now we faced a real dilemma. Sure, I could take this very sick boy in the car, to drop his brother off at school and fetching him, day after day, for the expected week to ten days of illness. BUT Monday, at 09:00 “Boo” was supposed to go to habilitation to swim with the physical therapist. These appointments are very sought after, so IF you get to have swim lessons with her, you only get three times per term. Last term he did not get to go at all, even though he can’t breathe and move arms and legs at the same time. He does one at a time and that does not count as knowing how to swim, according to the school requirements. Sure, he has been going to the pool with his class, getting swimming lessons. But his assistant refused to put on swim clothes and get in to the pool with his charge. So there was a lot of fighting, swearing at the swim teacher and endangering the other students. Some weeks he was not allowed to come with, as punishment, and there was zero learning taking place. At the end of the term, he was the only one left in the training pool, while all the others in the class, were having fun in the adventure pool. Which also became a matter of contention, as far as my very autistic “Boo” was concerned. All the swimming in the council pool was a disaster and he needs the calm environment at habilitation. He needs more than three lessons of course, but beggars can’t be choosers.
But you can’t take a child with high fever, head ache like a volcano under eruption and vomiting, to a pool. The parent is expected to don swimsuit and be in the pool with the child getting a lesson, you see. So, we came up with the solution, that T. would take VAB and go with “Boo” to habilitation, since I obviously can not split myself in to two mothers. I would stay home with “Gubby”, so he did not have to go out. But National Insurance would not allow this! I do not work, therefore I am to look after all our children. And yes, I am expected to split myself in to two people and be there for the child which needs to go to habiliation and be at home, holding the vomit bucket, for my sick boy. My husband is not entitled to be home at all. The only thing people told him to do at work was pretend that he himself was ill, but then he would not get any pay at all. Or he had to say that he was working from home and risk his boss’ anger, since there were meetings to attend. In other words, VAB is only for a two-parent-WORKING family.
Last year, around this time, it was ME who had the influenza. If there is one thing which must never happen, it is me becoming so sick I can not stand on my feet. Because the same rules apply then, as above with the VAB. I was sooooooo ill. My head hurt so bad I was vomiting. The fever was debilitating. I hurt all over and had to hold on to the children to stand up, hold on to the car and walls when they were not available. I tried to sit down and run my household in the mornings, getting the children ready for school. And shaking I sat down in the car and drove them to school. The teachers staring at me and telling me that I ought to be in bed. What? Were my children supposed to stay home from school till I got well, then? Noone had a solution to the problem, so I kept up this crazy thing for almost two weeks! I dropped them at school, drove home and crashed in bed with the mobile clock waking me up, to go fetch them. And then in the afternoons, while they watched film after film beside me, I slept on the sofa in the living room. When they were hungry, “Boo” tried to help himself and “Gubby”. I could not put up a fight, so there he stood in the kitchen making smoothies, decorating the entire kitchen counters, cupboards, floors and walls with strawberries and all the other ingredidents. The kitchen looked like a WWIII zone when my husband got home at 18:00 and all I could say to my defence was: “I have told you I feel pits”. But National Insurance do not cover stay-at-home-mums. We are not allowed to be human. We can’t ever get ill. We have to carry on, no matter how we feel. Our husbands are not entitled to do what all other father’s can do: Take over when the wife can’t do her job.
Sweden might think it has the perfect system, but my group of people, which is a minority, I agree, is excluded from the benefits which are used and abused by the rest of the population. There was even an investigation going on, a couple of years ago, when it had been discovered that parents filing for VAB, indeed did not have any sick children at home. Pre-schools and schools were contacted to see if the children had really been absent on the days, that the parents demanded payment for. Claiming they had been off work with sick children. Instead of putting money in to such a ridicous investigation, it would have been better to look over the policy all together and see if it works for EVERYONE in reality. Our family is the proof that it does not. We have three autistic children who can’t attend council schools, which means a lot of driving to other villages and towns, to independent schools. And when ONE child is sick, the entire house of cards, tumbles down. With autistic children, you do not have a social network of friends who can help out. It comes with the territory to be totally isolated, when your childrens’ handicaps are of the nature they are. Noone wants to go near you, and if they do, they do not understand how to handle the children. Once again, Sweden kicks on the ones already laying down. We carry our children on our shoulders all on our own, with all the problems they do come with. And for the most part we do it with a poker face on. Noone must know how tough it really is. But to not be allowed to be home with those children, when they are ill, and get the money everyone else receives… Is that not taking it one step too far?