After a lot of hassle, I arrived at Habilitation at BUP on Walpurgis/the 30th April. (The night when too many Swedish youths drink themselves in to a stupor, extra police has to be present but according to tradition, Walpurgis was actually just the night when you lit bonfires to chase the winter away, not a heavy drinking night for youths who are not even of legal drinking age. 30 000 youths sat in town and did just that.) I arrived alone. I told T. to not bother coming along. Most interviews are so pointless that it is ridiculous for both of us to attend. He never says anything anyway, so why should he get in to trouble at work, for being absent, yet again? The psychologist was sick, so it was just the counselor and me. We sat down and I told her the news, that the Autism school still has not bothered answering their phone or my e-mails. I am so glad that I do not have to take a decision for a year, since this is not looking good at all. What parent want to have their child at a school where you can’t get in to contact with anyone?
She told me, that after the interview, the next step is for “Gubby” to come and play, while being observed. Either in an exercise hall or in a room with an observation mirror. I’d rather be in the room so he feels secure and can turn to me, than behind a mirror. But I do not get to choose and they can’t tell which it will be, since it depends on who is being tested that day. Very young children have to have the mirror room. Then came the next shock. His testing will be on the 10 SEPTEMBER! There is a 4 1/2 month waiting queue, for play observation. I just sighed in my mind and shook my head, in my mind, not physically. This is insane. This stupid affair will have lasted for over a year, and we still have not received any tips on how to help him! Until the play observation is done, he can not get any help from a speech therapist or any other kind of help. Is it sane, that it has to be this way?
I started to explain why T. was not there and how little time he spends at home with the rest of us. And she asked if we have people who help us. Answer, no. We have to juggle and puzzle when it comes to everything. If one of us adults can not be there, then we have to try with the older teenagers, if they can not babysit and help out, then we either have to cancel the plans or take everyone with. And things will become the way they become, when you have all these brain disabled children. She wondered how much couple time we get and I told her: Zero! We can’t even go to the supermarket together without the phone starting to ring. I laugh when I hear about couples dating. Our last date was November 1990. And the baby sitters’ children had strep throat, so Johannes came down with that, after our anniversary dinner. It felt pointless to try to repeat that disaster. And what is the point of dating your spouse? You just sit and talk about the children anyway or his work!
Then she got on to the topic of me, and if I have any time to myself. I had to admit that I do not, except my three morning hours when I sleep. I told her that I blog and that this is my only chance of venting, getting things off my chest but for the most part it is a one way conversation, so in that respect, it is not really as beneficial as perhaps a conversation with someone. But I told her that I do enjoy it a lot except for when I realize that people are waiting for a new post, and it becomes another stress moment in my life. Everything has positive and negative aspects, doesn’t it? She said that, with autism, you are entitled to a lot of help. The parent can come and talk to a psychologist, but I told her that I can’t go in and tell such a person that I am stressed out about “Gubby”, that he is so much trouble and that I can not handle the situation. With “Kitty” it’s another matter. Then I feel that way all the time. But if you are going to get someone to talk to, at habilitation, it is has to be in connection with the autistic child. And my life doesn’t work that way. For heaven sakes, I am a woman. I multi-task. My life is full of wires going in all directions, all tangled up with each other. I can’t separate one thing from the next. It might be one thing that makes it all spill over, but life is not as simple as they make it out to be. If I was to sit down and talk to someone, I know I would end up talking about “Kitty” and “Boo”, not at all about “Gubby”, who is an angel. So, I did not commit myself to going talking to someone, because I have nothing negative to say about “Gubby” nor about his and my relationship.
She then asked about our mornings and I told her exactly what things are like. He might be tired in the mornings, but when he hears “Kitty’s” screaming, he wakes up. He comes out, but I do not want to trip over him, since he will follow me around, being confused about what “Kitty’s” and “Boo’s” screams are about. So, I turn the children’s channel on for him, and try to keep him in front of the TV, in the sitting room, while the others fight in the kitchen under my supervision. I iron, I police them, I nag for “Cookie” to get out of the bed, to get dressed, to hurry, and I have to tell the others to stop fighting, eat and get dressed. At 7:30 I finally can sit down with “Gubby” and breathe. He crawls on to my lap so we can watch “Shaun the sheep” together which is a program both of us love. Sometimes, he takes part in the clothes’ race they do before “Shaun…” and the toothbrushing they do with the children, as well. But not always. This goes on between 7:30 and about 7:40-7:45. Then I make him breakfast and we sit down in peace and eat, he gets to watch TV when I shower and at 8:30 we head to pre-school. We discussed if he can cut his food himself, button his buttons and zip up his zipper and it is a little bit so-so with that. For the most part, he knows that we will cut up the food for him. Especially if he says that he doesn’t want to eat something. If we cut it up, then he might give it a try after all. And as far as zippers and buttons go. Most clothes do not have them and when we are in a hurry, I just zip and button, out of habit. There is a time to let your child practise things and a time, when you unfortunately don’t have the time to muck about.
I tried to describe how he started late at pre-school because of his faulty kidney and Montessori policy not allowing nappies, how they had to bend their rules for him and how he became dry overnight, both daytime and nighttime. We talked through how he is scared of some noises but isn’t sensitive to sound in itself. How he doesn’t want to sleep in his own bed since Easter 2013. But the conversation took a nasty turn in my view, when she told of everything we were entitled to because he has autism, like a person coming in to baby-sit him at home, how we can dump him in a home, so we can rest and he can be with other kids, like himself. I see absolutely no need for such a thing, but I told her, that I often feel that I need a break from “Kitty”. She told me that one has no such right for children with ADHD. The children one as a parent really need a break from! Most people with autistic children do not feel a need for this service, which was something she admitted to. But she told me to contact social welfare about “Kitty”. Yeah, sure! Like I want to get in to their papers! They draw their own conclusions and put children in foster homes for nothing. Foster homes where the children get sexually abused. Families that decide to keep the parents from seeing their own children, turning the children against their parents or worse, not letting the children even talk about their parents, so they will forget them, and then the foster parents file for adoption. Social services in Sweden is the most sick institution there is. Families, where incest and physical abuse exist, never get investigated. But other families, loose their children and have to spend years, in order to get their children back. If they ever succeed. One gets nightmares after watching all reports and documentaries about it on TV! No, I would rather die than contact them about anything. I’d rather put him on medication, than tell them that we need some relief.
The hour at habilitation was gone in no time, and I do not know that anything came out of it. More than that “Kitty” and “Boo” are the real problems at home, not “Gubby” and that my older children do not accept his diagnosis and refuse to see that some of the things we do for him, might be necessary. She said, that it was a scream for help, from their side. That they want me to notice them. That they are telling me that they want attention too. But I try to give them that as much as I can. They can not demand ALL my attention. Small children must get their share. You can’t let the rule “the one that screams the loudest is the one that gets the help”, rule your home. That is what goes on in society yes, but not in my home! I help the one who needs my help the most, at set moments. And when T. comes home from work, he is Mr. Popular, with the teenagers. They manipulate his time, so they are not at all short-changed! Dad is exciting, mum is boring.
So, I went home, wondering why I once again had wasted a morning. I had a terrible migraine the rest of the day, but of course fetched “Gubby” on time and then the boys. And at 16:00, T. arrived and left with everyone, except “Gubby” and myself, for a Walpurgis celebration out by the coast. “Brännball”, football, quiz, roasting marshmallows, grilling meat and socializing. I never attend. I hate to go to social events in church, I hate to stand out in the cold (even if there is a gigantic bonfire), I hate to small talk, I hate to not being able to relax, since I have to keep an eye on three boys. Me and “Gubby” sat out on the deck till it got chilly and then we went inside and built a wooden railway track on the floor. Then he was bored for a while, when I watched part six of the Israeli TV-series “Shtisel”, which I am totally smitten with. The others came home all excited and had had a wonderful time. So had I. No fighting for hours! Just me and “Gubby” relaxing, doing nothing really.