The following post was written on the 17th August 2015. I could have just trashed it, but since I know my friends want an update and since I spent a lot of time on it, why should I trash it, just because it takes two weeks of nagging to get my husband to help me download a photo? So here it is, two weeks after the fact!
Both “Gubby” and “Boo” were excited about starting school today. I can’t say that I was equally optimistic. I know that we have had a holiday since the 12 June, but this year it does not really feel like it. This summer has not been anything like other summers and needless to say, not at all what I had planned. It started with visits to BUP (ADHD unit of child and youth psychology department), habilitation and to “Gubby’s” kidney doctor. What else? Can’t have a summer holiday from all that, can one? “Cookie” had to have her braces checked and D. had to have his second Twinrix shot, in preparation for going on a mission. Life was very, very hectic till the 26 June when we headed south to France, for a two-week “real” holiday. And we really had a wonderful holiday albeit a couple of altercations between certain elements of the clan. And “Boo’s” meltdowns of course.
No, true hell started on our way home from France. Close to the border between the Netherlands and Germany, I went sliding with the mini bus. Straight in to a round-about and the car was so wrecked that we could not continue to Sweden with it, nor have it back, fixed. We were supposed to have arrived home, happy, content, and continue our vacation by going to Sjöbo fair, paint the house and just relax. Instead we were stranded in our country village, with no transportation to go and buy paint, rent and bring home scaffolding. We had to go out to Sjöbo’s fair on buses, which took hours. And all the time, in the back of our heads, there was the worry about what to do. What car to get? How can we live with being heavily in debt again, over a car, for the next five years? While my husband sat from morning to evening searching for a new car on the internet, not being able to go and look at anything, since you need a car for that, I worried myself sick, was at BUP and habilitation again, going all over on the bus and getting more and more vexed about our situation. Fighting with the insurance company for one, took all life energy away from me. So when the kids suggested that I join them in the game “Hay Day”, I did. Just to escape real life. To pick up a book, was too stressful. I could not concentrate THAT much on anything.
When a week had passed, T. finally decided that something had to be done during the last days of his vacation. He borrowed a high-powered water hose from our neighbour and cleaned the house in preparation for painting it and wonderful members of our church, helped us get some of the paint home and the scaffolding plus some helping hands, for two days. It was a drop in the Ocean, it turned out, but all the same, it got us started and they helped immensely, since T.’s ADHD set in quite a bit, after the car crash. He felt overwhelmed about the painting business and was no doubt going to chicken out of the entire thing. Till our home teachers started to press him on the issue and organised things. He had mentioned the painting back in June, and they had decided to help with it no matter what. I will be eternally grateful for their service and their care because it forced T. to act.
But, when all helping hands were gone, we still had one coat left to do on the entire house and the scaffolding was gone, since we could only afford to rent it for one day. That is when D. climbed up on a tall ladder, we had borrowed, and the ladder just bent over. He flew down and scraped his leg really badly and sprained his wrist. He had to be rushed to the emergency room for x-rays and his eyes were filled with tears, because he was in so much pain. He is such a trooper. He always comes through for me, so I felt so bad and so guilty. I could not help one bit with the painting this time around (last time we painted was August 2005 when I was going through a miscarriage, but still was out there helping) since I just could not handle the strong fumes. One sniff and it gives me a migraine. I got a migraine anyway, since the smell worked itself in to the house somehow. The kids all ruined their clothes out there, including “Boo”, who for some reason brought out his winter jacket! I am not happy about it at all, but what choices did I have? None. The house had to be painted and the little ones could not be kept indoors. The house is now painted but the storage room needs another coat. And D. is still in pain. His ribs and his head hurt, the bruising is still there and his leg is still sore as is his wrist. The sore on his leg refuses to heal. May it all soon be well again!
When we got home from France, in a borrowed car, we discovered that D. had finally worn the sofa covers entirely through. I have had two sets for years, but the green ones are so full of rips and threadbare, that we have had to use the discoloured yellow ones for about a year. Now they were in threads. They had been living on borrowed time of course. So when we finally were able to borrow a car from a member in church, to go and look at a new car, which T. had seen on the internet, we also went to get more house paint and down to IKEA, to buy new sofa covers. We had no choice or the frame of the sofa would have got ruined! We had brown or grey to choose from and I chose the grey since it was the strongest fabric they had, all of 50 000 cycles. (The arm-chair seat is already noppy though, after just one month!) Because you wash these covers yourself! A must when you have children like mine. Forget about dry cleaning. Too expensive in Sweden. The sofa covers were not a cost we had counted on either, of course, for this summer. Money that could have been used to pay off our holiday debt, had to be used for them. But it is a relief to not have to see those ghastly threadbare, ripped covers anymore. One day, I will paint the sitting room walls, so we don’t have to see the children’s art work on the walls anymore, and the yellow grease spot where T. has had his head every evening! But the kitchen walls have higher priority! I will not even mention what the wallpaper looks like out there. I am actually starting to detest wallpaper. Children and wallpaper just do not go together.
So, we went to see the car and had a knowledgeable member of our church, go and look at it too. It was not cheap but it could have been much worse. Or? I will write a separate post on our car purchase I think, because that is not what this post was supposed to be about, but let us say, that after a LOT of hassle, the car was finally delivered to us, Sunday, a week ago (9 August 2015), in the evening. So for one week, I have had wheels.
So, back to this morning. I did not want summer holiday to be over at all. I need more sun. I need more rest. Nothing feels right. But, school started all the same, so I had no alternative but pack little “Gubby’s” rucksack with spare clothes and get him ready for his first day at the Montessori school, class zero, in our neighbour village. He was all excited and happily put on his new T-shirt from Primark in Canterbury. He skipped out to the car and we backed up the car, while T. took his time as usual. One can’t come early to anything, can one! Since I could not clone myself in to two people today, he just had to take the day off. You can’t have two autistic children start two new schools, on the same day, and not be there for them both!
So we were ready for take off, which is when I noticed a light on the dash-board of our one week old car, which should not have been lit. Worried, I had T. get the manual out while I drove. “There is a serious fault with the exhaust system. Drive very carefully to the nearest garage!” This is NOT what you want to see or hear, when it is only one week since you bought the car with borrowed money. This is not what you want to hear when you are totally dependent on that car, for your children’s school attendance! Neither boy can go by bus on their own nor is there a bus that goes to the schools. With moderation. There is a school bus for Waldorf, which is where “Boo” is attending. You pay a set sum each term for it. BUT you can’t have an autistic child his age go on that bus on his own. When he gets his meltdowns, a grown up has to be near by. He can’t be at a bus stop alone and blow a fuse. Either he will harm someone or storm off and miss the bus. So I was mighty concerned when we drove to “Gubby’s” school. I tried to not let him see it though and walked him in to the building and to his teacher. He ran up and stood and hugged her for a long time. This is a teacher he does not know that well, only having met her three times, BUT he felt insecure and then he hugs people. And tells them, that he loves them. I had to help him find his seat on the round mat on the floor, and then he sat there waiting for all the others, T. standing a bit off, and me having to head home to make phone calls.
I decided to phone Volkswagen themselves to ask about how dangerous it is to drive, with the said warning light on. After half an hour of wasted time in a telephone queue, I never was allowed to talk to the garage people, only two receptionists, and both of them told me to not drive the car at all. Right! How was “Gubby” and T. going to get home? Walk 7 kilometers? And what about me having to be at Waldorf, even further away, in less than 45 minutes? I told the women I spoke to that I had no alternative but to drive the car and they in turn said that it might mean more expensive repairs than it would have been from the start. I was told to phone the seller and ask if mobility insurance was included in our purchase. Only he did not open till 10:00! I had no choice but to take the risk and drive.
We drove off to our other neighbour village, where all parents and children had gathered outside the school buildings. “Boo” could not stand still so I had to let him run off and play on the swings, the water canal “toy”, the cableway… At 10:00 it started with teachers having walked off in all sorts of directions, holding gongs of different sizes. (I don’t know what else one would call them? Like a small dinner gong with a mallet.) One would hit the gong and another gong would answer from another direction and this is how it went on for a while and then the sound of the gongs came closer and closer, till the teachers carrying them finally gathered in front of the middle school’s building, where they “played” or sounded a melody with the different sized gongs. Then all the teachers sang a song, directed by the new music teacher. No words, just “noises”, but very pretty. Then the headmaster told a little story about the school which missed all the children over the summer, even though a whole lot had happened to it during the summer. Builders having done all sorts of work. Each teacher was presented and there are autistic children in several classes, since there is an assistant for each in grade 1, 2, 4, 5 and 6, so “Boo” does not have to feel odd. There are four others like him!
First the 9th grade teachers started calling up the names of their students. One at a time, they had to walk up to the stairs and hug and shake hands. Then applauds when the entire class was gathered and walked off to a set place in the garden school yard. Then came grade 8, 7, 6a and 6b, 5… “Boo” was bored and was playing, but when the 3rd grade was being called up, it was time to go stand with all the rest of us, waiting for his name to be called. Finally his teacher stood up and started calling out the names. I was standing beside a German Jewish father, wearing a crocheted kippah, whose son was commenting on everybody’s names, trying to figure out if there were more Germans there. This member in our church, has a son starting first grade, and when they called out his name later on, the son took one look at him and guessed “Chile”. I did not want to spoil his day by telling him that the boy’s father comes from Tonga!
“Boo” was called almost last. But he was excited since he had discovered that the girl he had had a fun time with at the council pool, was in his class and now he found out her name. I so much hope that he can make friends. When the 1st graders had been called, the 9th graders walked up and gave them each a beautiful flower as a welcome gift and then all the children formed a hedge. Two and two they stood and made part of the hedge or tunnel, all the way to the 1st graders classroom. I was taking photos so I missed that they started pulling parents to help out, to complete the tunnel. And then the music started. An old folk song from Sweden, which I love. Fiddles and accordion, like it is supposed to be, and “Boo’s” assistant being the one playing the accordion. All that was missing were people in folk dresses. It made me think about my granddad, who played such music on both his fiddle and his accordion, who danced folk dancing and had the right dress for it. And his parents got married in the church opposite this school! Wow!
“Boo” was a little bit bewildered, but went through the tunnel with his class, after the 1st graders. He could not judge the distance so he bent over the entire time, even though he could have walked upright. When he got to the end, we all walked in and took off our shoes at the entrance and walked up the cold stone stairs to his new classroom, with a brand new, pretty, wood floor. Us parents, had to wait outside, and not until the children were let out, were we allowed to come in and ask questions. Everyone went inside and new students were introduced and welcomed, except the teacher forgot to mention my son! That felt odd and I noticed other parents staring at us. Oh well, I guess they will soon figure there is another new boy in the class and that the assistant is for him and because of him. There is a parenting meeting the 26th, which is my big evening, when I have to stand up and explain that my child is autistic and if their children come home and complain, it has its reasons. I already dread that evening since I do not like to talk in front of people and it is a very sensitive thing ,since many people will think “Why did they have to come here.” Of course not realising that this is our last hope!
When all the others had left, his teacher A. and the assistant showed us upstairs, which has a room which “Boo” and his assistant can retreat to, when “Boo” can’t handle the classroom anymore, when he gets restless, when the noise becomes too much, when he needs space. He liked the room and we also got to see the Eurythmy room which had a really nice feeling to it. Then it was time for us to take our leave. The car gave me some trouble on the road, the breaks working poorly in lower gear? I hope it was just a temporary thing! I can’t go crashing in to more people this year or I will never dare to drive again. All of us are nervous wrecks as it is. When we arrived at Montessori, “Gubby” was having fun on the slide, all children being out for lunch recess. T. was in conversation with “Gubby’s” assistant, who they might actually get rid of, if things go very well for him. I listened to that in horror, because he needs someone to be there for him ALL the time! The assistant is used to dealing with kids like “Boo”, so he could not see “Gubby” having any problems, but he does, since he can not speak like his peers, nor understand like them and he lacks all the social skills to function at a school. Just because you do not act out and hit people, does not mean that you have no problems! He needs a person who is there to interpret the world for him and who will be his mediator or help him with communication.
I spoke a little bit to his teacher, who was the one who thought that things had gone so extremely well, and then we all headed to our own village, me getting a report from T. All children had been asked what they had done this summer and “Gubby” had answered “we swam in France and then crashed our car in a round about!”. All the others had just mentioned all the teeth they had lost. But I guess France and the crash is very much on his mind and something which worries him still. And I who thought that it did not really have that much of an impact on him. After all, for the most part, the children had a blast that day, pushing the trauma to the back.
He had actually joined in with all the activities. But when lunch came, he was not impressed with the seat assigned, so he had started flaxing and waving his arms. And the dish, called “pytt-i-panna” did not suit either. I could have told people that. He never eats it at home. He had actually picked out all the meat pieces and eaten them. I was all amazement. He never does that at home! Here he doesn’t touch the dish at all. What is Pytt-i-Panna? Poor-man’s-dish really. When I grew up, my mum would make it with all the left over cold potatoes and left over meat pieces. You cut the pieces pretty small and fry them. But I doubt anyone makes it that way anymore. Now you just go and buy a big 1 kilo bag of it. The potato pieces and meat pieces cut in to perfect little cubes and then a little bit of fried onion among it all. I think that is what is served at the schools as well. Originally one had beats with it and fried eggs, with the egg yolk pouring out over the “pytt”, when cut in to. What do I think about the dish? Yuck! I went on food strike when my mum made it. And she never served it with eggs and beats. I have only eaten beets once in my life and that is when I worked as an au-pair in London. Me and another au-pair, were suddenly dying for pytt-i-panna, even though I never ate it at home! So we boiled potatoes, quick-cooled them down, cut them up as small as we could and fried them with meat. I can’t remember if we used hot dogs or bacon for meat. But we also had bought beets and fried up eggs. That is the only time I let beets, pytt-i-panna and that kind of a fried egg, pass my lips. I hate loose runny egg yolk and of course have not eaten an egg for the past 16 years, thanks to gall stones and not having a gall bladder after 2009. I can not get myself eating something which is magenta coloured either, so beets are a no-no. It feels like the wrong colour for an item of food! I hate the surface of fried potatoes. It gives me goose bumps. And meat has never really been my thing, except in exceptional cases. I know, I sound autistic, describing food in this manner! But I was born a finicky eater and it has not improved with age, since my gall system can hardly handle anything. Forget that removal of your gallbladder is the solution to all your problems! It only aggravates the problems!!!!
T. had to drive off with the car to the closest mechanic, after we arrived home. He tested the motor and could not find the problem but said that if the light stays on, we have to take the car back to where we bought it, for them to fix it. That is what the warranty demands. Great! Easier said than done! So, now I will live in constant fear, that the car will break down on me, out of the blue. I who thought that I would be able to relax on that point and just concentrate on getting in to a routine with the boys, run back and forth to habilitation and to BUP… It’s been decided that “Kitty” must be tested for autism as well. His doctor suspects that there is more behind his problems than “JUST” ADHD.
Update on the 31st August:
The light of course did come on the next day, on the car. Life can not be simple, can it? The car had to be taken back to the seller and we were given a horrible Ford in its place. It smelled strange. And on the last day, when I had to drive it, I could not get the window up on the driver’s side. So we drove through pouring down rain, with the window down. All this, since the AC was broken. We had our own car back for a couple of days and then the light was back on and up to the seller again and a new car had to be borrowed. A car without AC, without radio and only one window which could be rolled down. We got our own car back Friday evening, last week. But I am a nervous wreck. It does not feel like a safe car to drive and I almost freaked out today, when the rain was pouring down. What if I would do some more aquaplaning and have us all killed this time? Or be in a new wreck? T. is taking it in to the car inspection tomorrow. We might as well find out if there are hidden faults, ready to emerge at any time. Something we should have insisted on, before purchasing the car in the first place.