3 December 2016:
I am somewhat behind in my blogging about the advent calendar, but that does not mean I have stopped trying to do something good every day. The 3rd December was supposed to be dedicated to the blind, or to help people see something. One of the more difficult suggestions were to take a course in how the deal with a certain disability. Courses usually run over more than one day and they are not offered on Saturdays. But it gave me the idea, that I would do something for my boys, which I absolutely did not want to do.
I do not like parties. You have to dress up and I do not mind dressing up in itself, but so much is associated with dressing up. People take an extra look at you and tell you how you have gained weight, how you look pregnant (because you have a C-section belly you can’t get rid of) and how you have aged. How fun is it to hear these things? I mean, why does one say these things to a person? Does it make one feel good? Does one really think it makes the other person feel good? Then you have to go on socializing with these people, who have just insulted you. You have to put on a smile and pretend that you are having a grand old time. And if you have your autistic sons with you, there is no way you will have fun, because you are on call the entire time. You have to make sure there are no nuclear melt downs. You have to make sure there are no misunderstandings. You have to explain your sons behaviour to everyone. And you have to explain to THEM what is going on and what is expected of THEM.
But on this day, there was a different sort of party to go to. One for autistic people and their families, organized by the Asperger & Autism association. A Christmas party especially catered to autism peculiarities . We decided to sign up for it, even though it was a one hour drive from us, down in Malmö. And I had to struggle with myself. Because I am a shy person and scared of meeting new people. But, this was not for me, but for my boys, so we all dressed up for a Christmas party.
My husband had let “Boo” know the plan in advance, which is not always a good thing. Sometimes, he will build up pictures of what it will be like and when they do not match reality, he will explode. He had told everyone at school where he was going and the excitement was truly there. Me trying to soften the blow a little, trying to tell him that I had no idea what it would be like or if it would be fun. I discussed it with my husband, since I was not entirely convinced that such a party was a good thing to go to. A bunch of people who can not stand to be touched, who can not read each other’s facial expressions nor body language, especially since they do not really use any themselves! But, since “Boo” was all up for it, I could not be the party pooper and back out last minute.
“Gubby” told me at once, in the morning, that if he was going to a Christmas party, he wanted to go as a reindeer. I know! For Lucia, 13th December, in this country, their will be Lucia processions in schools and at work places, not to mention public places. What is becoming strange in Sweden, is the fact that the shops no longer want to cater to the tradition. Some people are trying to do away with the Lucia processions of course. Saying that they are not politically correct. Some kids dressing up as ginger bread men, are considered racist, because gingerbread is brown. And of course, Lucia is not a Muslim but a Saint from Sicilia, who had her eyes stabbed out because she was a Christian. Which ever, I have tried to find an outfit for my one son who is tall and needs size 146 cl and an outfit for my younger son, also very tall, needing 134/140 cl. But the clothing shops do not carry anything above 128 cl, so this means that there is supposed to be no Lucia processions, including boys at least, beyond pre-school. I feel offended by it, since I almost have only boys left at home, willing to do a Lucia procession, here for us! What are they supposed to wear then? The ony thing I could find for them, was reindeer outfits at HM. How crazy is that? The schools would never allow it. Reindeers are not included in the traditional Lucia procession, but that is what we will have here at home, I’m afraid, because I can’t make my boys put on Lucia dresses!!!
When “Boo” heard what “Gubby” was going to wear, he wanted to wear his, so at noon, we headed out of the house, with two excited reindeers, and one 12-year-old, who had chosen a T-shirt with pizza slices and hamburgers all over it. No Christmas theme there! Before we could head for the party, which started at 14:00, we had to go to two places. One was the artist shop in Lund, to buy me more repositionable spray glue, for the template I am using to make bricks on my dollhouse. This is getting expensive! One can has already been used up, when the instructions said that one would only need at the most, two layers sprayed on, and then one was set. I have had to re-spray the template after each use! My plans were to go to the party and then finish the second side of the house, that evening, continuing with the final third side on Monday, 5th December. So I was not happy when I found out that the shop had sold out on the glue and would not get more in for at least another week, the supplier not having sent more in the previous shipment. But the man was kind enough to find me a shop in Malmö, which still had some.
When I got out to the car, there had been a fight out there. “Boo” never being able to wait, without teasing someone. So he was screaming loudly in his deep voice (typical autism thing) and I felt very upset because how fun is it to go to a Christmas party when everyone is in a bad mood? Next stop was the paint shop, to get more varnish. It took about one minute, before “Boo” entered the shop, angry. He had had a disagreement with his father at the chemist, next door, so now he walked around like a thunder-cloud in the paint shop instead. I found out at the chemist, that “Kitty” had not been taking part of his medicine for 5 DAYS! “Kitty” takes Strattera, a non-stimulant ADHD medicine, for that part of his disability. But he ALWAYS does the mistake of telling his father, who also has ADHD, that he is out of part of his medicine cocktail. One person with ADHD telling another person with ADHD that an important medicine is out, is NOT a good idea. Because my husband has a memory like a sieve. He remembers nothing! So for 5 days he was told the medicine was out and for 5 days he did not buy any. Not until I said that we would go to the chemist Saturday and buy it, after hearing it was out Friday evening, did we go there. And when I stood there in front of the apothecary and found out the truth, I almost blew my top. I had to scold my son and tell him that what he has done is very dangerous. And the lady helped me, explaining to him, that his body is used to a certain dosage and you can’t just change that dosage like that. He could have a heart attack for heaven’s sake! (He has to take two different dosages Strattera since they do not make the correct dosage pill for him, and he takes another kind of medicine for his aggression.)
Onwards we went towards Malmö and there was terrible fighting in the back between “Boo” and “Kitty”, as usual, and poor “Gubby” sitting in the middle of it all, looking sad, and my husband stooping down to the two fighters level. I really, did not feel happy at all and would gladly have skipped the party, but to disappoint the boys in that manner, no way! We got to the artist shop in Malmö and I ran in to buy the glue, so they would not have a chance to start a fourth fight. Finally, we were on our way to the party and we found the building without too much trouble. It was more difficult to find a parking place and while we searched, I started to get worried, because I saw all these men walking in to the building, dressed in fancy bow ties and smoking. Let’s say with two reindeers, we were seriously under-dressed.
After my husband had done a parallel parking for ten minutes, we walked in to the building and were greeted by a bow-tied dressed man and a woman in an Odd Molly look-a-like cardigan and trousers. We said “Autism Christmas Party?”. The woman smiled and the man took a step back. “Are we under-dressed?” was my next question and she smiled again and told us that no, we were not, that there was a choir practising on the second floor. She directed us to a big room on the ground floor and looking in there, I felt my agora phobia coming on. Hardly anyone was there yet and there were several tables set up, but with plenty of space between them. In the middle of the floor stood a lonely little Christmas tree and behind it was a stage with a piano. People were pretty quiet and sat eating and talking by the tables, but no music was being played. I had to take a deep breath and think “I can do this! For the boys!”.
We sat down at the table closest to the door and the boys asked if they could go and get “”food”. Beforehand T. had asked me what Christmas “fika” meant. “Fika” in Swedish is a word which can mean a snack but it can also mean coffee and cake. “Fika” is when you take a break and sit down to eat, drink and chat. So, I suspected that it might not be food we were going to get treated to, but perhaps ginger snaps and fluid OR Lucia buns and fluid. Never in my wildest imagination did I expect this!
A feast of SUGAR! A dream for the children, who had asked so much about the party on the road, and me not being able to answer any of the questions. Autistic children need preparation and they want answers to their questions. Well, they were thrilled and I think that so were all the other children there. And in retrospect, the organizer did the right thing. Autistic children are finicky eaters.They do not like smeary things or mixed up things. Here everything was in their own boxes, dry and separate. Nothing to be upset about and put up in nice rows! Perfect!
“Kitty”loaded a plate full of candy and so did “Boo”, when he saw what his older brother did. I went up to the table with “Gubby” who does things a little bit different from his brothers. He only took a couple of candies, a Lucia bun with saffron and some of the cookies. It was too difficult for him to balance the thin paper plate, so I carried it for him and then I asked him what colour of “saft” he wanted. You can’t assume, always have to ask so that you do not take the wrong kind. He will not explode like his brothers, but will just look unhappy, if it was not the right thing. Going up to the table, in order to get the saft, for myself and “Gubby” (latter-day saints not drinking coffee of course), another mother stood up there with her son of about 20. I took the clear cups meant for “saft” and poured up the yellow “saft” both “Gubby” and I wanted. The other mother had poured her son’s “”saft” in a coffee mug though and when he saw what I was doing, he said “You were supposed to put it in a mug like that, which one can see through!”. His mother apologized to him and I knew how she felt! We all go through this! I realized what a relief it was to be at a party like this, because ALL of us go through the same things with our children and the children all act the same way! No judging here, only understanding!
Of course, I would have grabbed the mug quicker than quick and poured the “”saft” in the right mug, before melt down occured but the mother tackled her son in another way and asked if he would be alright with having the “saft” in the mug she had poured it in. He decided that he would be alright. And she helped him to their table. I looked around the tables and realized that by every table sat true heroes. These parents give so much to their children. You have to have the biggest patience and so much extra love, for these children. I wanted to have said how much I loved these parents at that moment, because noone else but our group know how much it takes from us parents, to have children with autism.
My children sat spread out at our table, so they would not bump each other. Saw it at other tables as well. And then it was soon time to go up and dance around the Christmas tree. This is something I never take part in. Have not done it since I was a child. Or should I say, that is when I started refusing? But I walked up to take photos. That only became a blur anyway. “Kitty” refused to go up because he did not want to dance with strangers nor hold a stranger’s hand. He was happy with his candy. But T. went up with “Boo” and “Gubby”. Everyone held hands, except “Gubby”, who refused to hold the hand of a man beside him on his right. He tucked his hand under his arm and they left him be. SO a hole in the circle, but there was noone forcing anyone at this party nor any judging. What a relief. Suddenly “Boo” came storming towards me, angrily, because his dad had bumped him. That is also very autistic. Assuming that people hurt you on purpose when they might just have bumped you by accident and not taking touch very well, having overly sensitive sense sensors. I had to calm him down and then lead him back to the dance, taking “Gubby’s” hand so that we could have a full circle, with “Boo” being better about taking people’s hands.
After the dancing, we sat down for more eating, and then it was musical chairs. “Kitty” once again refused to take part and played on his mobile phone instead. (He does not have one really, just his dad’s old one, which is only good for playing games on. He can’t make phone calls or surf the net or anything.) No, he told me “I get so angry when I lose, so I do not want to play!” Like one of the organizers said to me, “Very mature of him, to know and to take a conscious decision to not do something, which will cause a melt down”. “Gubby” did not understand at all how it was played in the beginning, but soon got the hang of it. Usually this becomes a loud and very competitive game with screaming and so on, but not here. The parents were polite and left the chairs to children, when they got unlucky. And some children had no language. But all were in to it, in their own ways. And there was no arguing or fighting when people lost. Noone who tried to sit on the same chair, since autistic children do not want to touch strangers! Unless their names are “Gubby”. He usually is very huggy and can share affection with strangers. In the end, there were two people left, a girl and our “Boo”. All parents laughed. We had to. The girl walked around that one lonely chair, slowly, slowly, while the music played. While “Boo” ran round the chair like a ferret. He overtook her several times, every circle, and it looked so funny. Finally the music stopped and he was just in front of the chair, so he sat down and won. He is used to loosing things, since he has motor problems and is clumpsy, so he really became like a sunbeam when he won a special chocolate bar. The girl got one too, in order to not be unfair.
There was more dancing around the tree, but my boys wanted to dance on stage instead. Or dance? “Boo” with his gross motor problems, did his own free dance or surrealistic version of a dance. And “Gubby” was happily doing his own little usual flax! Smiling like a Chinaman and swinging his head like Stevie Wonder. He was a happy boy! And then Mrs. Claus came to hand out candy bags to all children. “”Kitty”” came up for that. Most people started to leave after this, but “Gubby” and “Kitty” went to the handicap toilet, because both needed to poop. I had to go there, because “Kitty” does not really want to help his brother, since he finds it too gross, and then “Gubby” cries. “Kitty” had a melt down in there, because I was too slow. Without a wet wipe, it is difficult to get “Gubby” clean and I had forgot the wet wipes at home! And if I do not get him clean, he will pull down his trousers anywhere and tell people that he needs worm medicine, because it itches. In the middle of this chaos, someone is knocking on the door. Finally, I got “Gubby” clean, and told him that he must get dressed outside the door, since someone needed the toilet desperately. And I ordered “KItty” to go to the men’s room instead. Outside stood a father with his 20 something daughter and needed to get in. I apologized and explained that I had forgot wet wipes. Poor “Gubby” had to stand in the cold foyer, getting dressed. He always strips off his clothes, you see, in order to go to the toilet. Don’t know why he must take off everything, but he always does.
When we finally got back in to the hall again, they were starting to put things away. I got to talk to the woman in charge and thank her for letting us come. It sounded like they have only been doing it for three years now. Because they saw a need. But they never know how much food to buy and how many people will come. Last year, they had been on the first floor, in a smaller room and 35 people had showed up, without having signed up. There was not enough food, nor enough room. Some people had had to sit on the stone stairs leading up to the first floor and her own sons, had freaked out, because people were just sitting too close. This year, 30 people who had signed up, did not show up, so they had way too much food. Right then, “Kitty” screamed out, because they were throwing away the tin foil boxes with cheese doodles and crisps. They asked him if he wanted them, so he said that yes, he wanted the box with cheese doodles and “Boo” piped up and said he would like the box with the spicy crisps. Everyone got busy finding lids for the boxes and the woman laughed at my happy boys. Little “Gubby” was just happy and needed nothing more. He would never say anything like his brothers had just done. We had put his leftovers in a mug and he was happy and content with that.
When we had said goodbye to everyone, we did not know where “Boo” had disappeared to. Then I saw him over by a man, by the stage. He was sitting alone at a table and we called for “Boo” to come. He came up happily to us and said “He is my friend and guess what, he has the same thing I have! He also becomes ‘Bomb’ when he gets angry”. (Bomb, from the Angry Birds film.) “Boo” is amazing because he just starts talking to anyone and says whatever. He walked up to say goodbye to the girl, as well, whom he had competed against. I do not think that it really dawned on the boys, that all the other children, teenagers and young adults, were also having autism. They just knew that this was a good party they had been to. One that took their view of things and catered to their “problems”. I am glad that we chose to go to this party and not the one in church, which would have been loud, noisy and would have had my boys in tears and hysterics!
When we were out of Malmö, we decided to stop by at a shop still open, which according to Facebook have cheap colouring books for adults and there I finally was able to buy a much wanted advent candle stick, which is sold out every year when I go shopping
for it. When it is dark, the lights form a heart! This year, it was also sold out, but I was allowed to buy the exhibition copy! So I was a happy camper. And to celebrate a pretty good family outing, we finished at the golden arches. I know, after all that garbage food, we headed for more. But the boys became so happy and we did not have to cook when we got home, too late for having the energy to do so. Instead I could start varnishing the second side of my dollhouse!