Two insulting meetings about “Gubby’s” assumed Autism: Part 2

Tuesday, 15 April, I headed for BUP, once again. First of all, I needed to go fetch “Kitty’s” new chain comforter. We went there, to try one out, a couple of weeks ago. There are three different comforters: batting comforter which is a rather warm one, ball comforter, which is a little bit noisy, when the balls move around imageas  you move in your sleep or stir, and finally there is the new chain comforter, with lots of chains sewn in to the quilting. You can have them in different weights, depending on what you need. The thought behind them is, that it should feel like you are being held, cuddled. And this in its turn will make you fall asleep instead of just stirring around. Children with ADHD can’t fall asleep, there minds are racing, and then in the morning, they are deadly tired and can not wake up, when they ought to. It’s a constant struggle. One I feel that I have been loosing so far. So, now I am going to give this a try and see if it works. “Kitty” thought it was quite fun to try them all out. You go to this playroom, where the child get to lay down on a mattress and try imagethe comforters. He liked the chain one the best, so that is what was ordered for him. The occupational therapist said that Tuesday would be a great day to fetch it, since habilitation is in the same building. Well, I got the 8 kilo comforter in a bag and then told the secretary that I was also there to see the habilitation psychologist and counselor, on behalf of “Gubby”. And then she tells me, “it’s not in this building. And I don’t know where it is either! You have to go out and search the area. Ask someone on the walking paths around here.” Sure! Like everybody else would know where it is, when a secretary working for BUP doesn’t know where it is. There was not a single person to be seen outdoors. I ran in to my husband though, and told him that I had no idea where to go. I received a phone call from a girl in church, just as I was going to get dressed, put make up on, and go. She would not stop talking which meant that I had to throw on my clothes, stick my make up things in my bag and run, forgetting all the papers I had planned to bring. Like the article from Metro about there not being money for these children, like the referral paper that we strongly disagree with AND the paper that showed date, time and place for this habilitation meeting.

I was forced to phone home and ask what the paper said. It was “Cookie” who answered. She has a propensity nowadays to not listen to a word you say. She has entered her teenage years and is having an attitude towards me that I can not abide. She can not stand “Kitty” and picks a fight with him as often as she can, just for the fun of it. But she does not like to be scolded for it. She is actually getting on everybody’s nerves, with her teasing and her attitude. I don’t ever let her and “Kitty” stay home without supervision. I just can not trust them, to not fight. But this time, it was her other problem, that became the topic for the entire phone call. As soon as she answered, she started a screaming whine. “Dollie” had obviously stolen cheese imagedoodles from her. Don’t ask where the cheese doodles came from. I didn’t buy them for her! She would not stop, she never does. She just goes on and on and on, it getting louder and louder, more and more hysterical. This is NOT a nice personality trait of hers. And this was not the time for me to listen to that sort of thing. I needed an address and number as soon as possible. I had arrived 20 minutes early to BUP, so I could fetch the comforter, now it was 13:00 and we were supposed to be at habilitation. And she did not give me the courtesy of letting me say why I had phoned. I got so angry and told her to be quiet, but as I said, she does not listen at all when she is in a full whine, as T. calls it. So I hung up and told T. we might as well leave and go home. He got furious, phoned home and screamed at “Cookie” so loud, that all parents that were now on the walking path, looked at us in horror. They turned around and wondered who this mentally insane person was. One woman came out of a house to see who was screaming like that. And as usual I stood there wondering how I could have been so stupid, as to have married this man. He so clearly have the same problems as “Kitty”, but I did not understand this as a young woman. Now I have to live with the constant embarrassment, of his constant outbursts and socially unacceptable behaviour. People in Sweden, do not scream the way he does and when they don’t understand the language you are screaming in, well, then you are in deep trouble. I stood there and wheezed at him, to stop. When he would not, I walked off since I did not want anyone to see that we were together.

Finally “Dollie” came on the phone and read off the address to her dad, from the paper. Not that it made any difference, because when we arrived at the building, not a soul was to be found. We walked on to every floor and finally, on the top floor by a copy machine, we found two people. It turned out to be the two people we were there to see, but we were all in the wrong building. They were running late. All four of us walked off to the right building. As we came in, I saw a swimming pool, to my left. I commented on it and the psychologist told me that it is for the autistic children and handicapped children. She said that autistic children can not go to a regular pool, they get hysterical from all the noise, so they can go to this pool instead and swim and play in silence. What? Yes, I can understand autistic children having this problem. But my son has no problems what so ever going to a pool with lots of noise. He has been doing so since he was born! He loves it. It doesn’t become him that it is noisy, children screaming, lots of people. He just bathes and swims and have a blast. In the baby pool he goes up seeking contact with the small children. Fine, I can take him to this silent pool! He would love it. If it is for free, which is great since the regular pool cost a fortune. Although, I do hate indoor pools. It smells so icky, the air is too sticky and you just feel gross. I can feel how the place is swamped with germs, foot wart virus and athlete’s foot. Maybe I can send T. there? But what do we do with the other boys? This is not fair on them! They will get jealous and they of course are NOT welcome, since they have or display ADHD behaviour. In other words, they are the noisy children which Autistic children can not handle. But we always do everything as a family. We do not exclude anyone!!!

We went in and sat down and the two of them wanted to know how we feel about the diagnosis that our son has received. What one must understand here, is that my husband never says a single thing. And when he does, it is usually off the wall because he has not kept up with the conversation, even though he claims to understand Swedish. Or we have moved on, but he is still stuck on something that has been said, which we have left because that was not what the meeting was about, or it was time to move on to something else. Or worse of all, he has fallen asleep on the chair. So, in a way, I do not understand why he should come along to any meetings at all. It has become me talking all the time. I know “Gubby” the best, I know how he acts, same goes for the others. After all, I spend all my time with the children and he hardly spend any time with them at all. When he is home, he is too occupied with cooking his strange food, eating, talking to D. and “Dollie” who have a way of manipulating his time and then the younger ones do not exist. After all, the older can discuss things that T. finds fun and interesting, tease him so he is more of their buddy. The younger ones can’t compete. As soon as he has eaten and finished what conversation he has had with the older ones, he goes to shower, brush his teeth and go to bed, or lays down to read in bed, in order to fall asleep. He is too tired to be social. To me, it feels like I am running a hotel. He comes home here to eat and sleep. And I am all alone with everything.

So, it was me who spoke the entire time. I told them that I have no idea what to feel. That I have only met two children with Autism. One girl who lived in her own bubble, who sat and banged her head on the wall when I visited or she ran out to the family car, to sit and listen to the radio, and be away from everyone. Being inside with new people was too upsetting for her. The other girl attends our church. She is a disturbing factor. When we sit and discuss Christ and the gospel, she wants to discuss testicles. She is completely obsessed with testicles. And it makes me uncomfortable. She says strange things all the time, as a younger girl, walked around smelling people’s bottoms. I am not sure if she still does this at 8-9? My son, is not like any of these girls. I asked to see the referral and started going through it sentence by sentence, telling them how the psychologist was wrong with this and that assumption. Finally, the psychologist, at the same time as I realized so, said that perhaps we should just move on. THEN my husband starts pointing at the paper and I tell him, we are moving on, it’s too much. But in his ADHD way, he did not listen to me. He had not caught what she had said nor how pointless it was to sit and go through this very pointless document that contained so many faulty things. But he just insisted with a one track mind that we go back to the stupid paper and I had to tell him to stop it. Which I guess made both women raise an eyebrow. But I am sorry. At that point I just wanted to walk out of there. It all felt so very pointless. Why were we there really? Honestly? He doesn’t need a silent swimming pool area. He doesn’t live in his own world. The stupid school set up to help children with the diagnosis, ignores us. Talk about an attitude. When I wrote the very last e-mail I even wrote “I know you have reached your limit, that you do not accept any more children, but I still would like to visit the school and see how these children are schooled. And perhaps you can tell us what would be an alternative since your school is full”. So I feel it twice as rude, that they do not answer!

What was the meeting all about? They wanted to ascertain if we wanted to go to the parenting information course. I shuddered when I heard what they expected me to do. The course is offered in Kristianstad and Ystad. Both places take an hour to drive to. And you sit there, all day, from 8:30-16:30, two days in a row. Right! And who pray is going to look after my children? I have to be home at 7:30 and send three children out the door, to the bus. Then I can start breakfast for “Gubby”, shower myself, get us both dressed and leave for pre-school at 8:30. At 12:15, I have to fetch him, since otherwise my life will suddenly turn complete hell. We only get one calm hour at home, to just have peace, before it is time at 13:30, to head to town and fetch his prize-fighter brothers. And then an afternoon of screaming, fighting, nagging, … ensues. Food is to be cooked. Homework gone through. Who, just who is going to do all this, if I am not here? And who is going to help my husband find a new job, because of all of his absence from work, he would for sure loose his present job. He works with people with grown children, who have forgot what it is like to have small children and trying to work full-time. And then they do not know anything about having children with disabilities. I told the two, that the offered towns are out of the question (and I think I am going to have to skip the course when it is offered in town as well). I can not solve the logistics of it all. And what is the point of a course like that? If Autism is everything and anything, none of us parents are going to have anything in common. All our children are going to be different and have different problems to be solved. I hate when you are in a meeting and one parent bring up their problems over and over, taking it as a personal therapy session, forgetting that the rest of us have absolutely no interest in her problems because we don’t share the same problem. And when a lecturer tells the parent to not bring up specifics since there is no time for such. And it not being a proper forum for it either. I detest it with a vehemence. How people are so inconsiderate. Yes, we might all be desperate to find answers to our specific problems, but that does not mean that we suffocate others with it. Even worse is, to sit at a course and find out you already know it all OR that you could have read it yourself from all the  handouts, at home, instead of from a power point presentation OR when you feel that nothing describe your child or is helpful in dealing with that particular child! I’ll go to a course, if it is offered in evening time, when the older ones can look after the younger ones. Or my husband can look after them without risking his job.

That was the meeting! An hour had passed and nothing had come out of it, more than that I was not willing to go to Ystad or Kristianstad, and that my husband and I are not on the same level. And we have to go back on the 30th, to continue the conversation. Excuse me, but this might be all fine and dandy for them, since this is their job. But my husband had to take the entire afternoon off, to go to this one hour meeting and he can not just do this over and over again. They could easily have scheduled a two-hour meeting and not wasted his afternoon like this. We could have talked through everything in one setting and then he would not have to come with me anymore. Very poorly planned from their side, especially since they fully well can see in our papers that we can not devote 100% of our time to “Gubby”. I have four sons with disabilities. True. One does not live at home anymore, thank heavens. But all the same, I have three sons at home, who each need my help A LOT. They all require their own meetings, their own methods of learning, their own way of growing up. At times, one child becomes more important than the others, because a lot of meetings have to be attended on its behalf, like with all the testing appointments with “Gubby”. But then meetings for another child are required. Habilitation seems to think that I can drop everything for “Gubby” and I wish that I could. But I can’t.

I must be there for all six. D. is still in school and needs help with everything from editing papers to just talking about his future or how to handle the constant bullying in his class.  “Dollie” needs to be kept in check. “Cookie” has to be nagged on to do her home work and stop picking on her brother. If she can get away with it, she watches “Hannah Montana”, plays Sims or reads novels like “Cinder”, “Harry Potter”… instead of doing homework. She will not go shower and get ready for bed until someone makes her. She makes a point at winning, meaning being obstinate and staying up till everyone else has gone to bed. If one does not make her do the right things, she will stay up till midnight-01:00 in the morning, not get out of bed until 7:25, blame her brothers for getting late to school, start falling asleep in school around 10:00… Her teacher is as upset about things as we are. She refuses to go to bed, she is too tired to get up, she skips breakfast and she usually refuses to eat lunch at school as well, because it is insufficiently grand. In the plan we wrote down with the teacher, she has to eat breakfast and lunch and also go to bed at an appropriate hour. But I guess she just wants to fail school. She has taken “Dollie” as her example, the problem being that “Dollie” has never needed to study up till now, in gymnasium. She heard things once and just remembered and knew it. So “Cookie” thinks that she can sit and watch films and TV, like “Dollie” did all the time. But “Cookie” has always struggled in school, so this scheme of hers, is doing her no good at all. She has to have math help from a special ed teacher and she has to use the computer for all documents, so that IT, will point out all her spelling mistakes, right away. In other words, this girl needs me a lot as well. For regular readers of my blog, well, I don’t even have to start telling you how much my three youngest need me. Constantly, all the time. I am their chauffeur, I am their nurse, I am their teacher, I am their cook, I am their conscience, I am their mediator, I am their police, prosecutor, defender and judge. I am their comforter. With my three youngest boys, I always have to be one step ahead of them all, and I am sorry, it takes all energy out of me. Only when you know them 200%, can you do this, and I do know them that well. But I also have my hypothyroid problems, which makes me so terribly tired, that there is no energy left for anything extra. I can take care of them BUT to add on courses, meetings, well, it’s too much. I can not split myself into  several people nor turn myself inside out. And that is the problem here. BUP only sees one child’s problems and thinks one should devote oneself entirely to those. But when one has more than one handicapped child, that is not possible. One does as much as one can, but one will always feel that it is not enough. And I am sure that society judges me and says that I am not doing enough.



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44 responses to “Two insulting meetings about “Gubby’s” assumed Autism: Part 2

  1. Ask WordPress about it. I just know that when I try to look at some pages on the internet, I just get a question mark in a white box, instead of images, and my husband who is supposed to be the computer expert in this family, can’t explain it or sort it out for me. I write my posts on an iPad but when I have image problems on the Internet it is all over, on my laptop, stationary computer which are not apple computers, and the iPad, so your guess is as good as mine.

  2. Howdy just wanted to give you a brief heads up and let
    you know a few of the images aren’t loading properly. I’m not sure why but I think
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  3. I am glad you liked the post which was the second part of two. The first one has the same title but part 1, at the end of it. I am glad if something I write can help someone! That is my goal.

  4. Wow, this article is nice, my sister is analyzing these kinds of things, so I am going to tell her.

  5. Your welcome! I am glad you find the Autism information useful!

  6. It’s awesome for me to have a website, which
    is useful in support of my experience. thanks admin

  7. Well, we are still waiting. Dealing with BUP just means a lot of waiting and little help I’m afraid! Life goes on without them. We are still waiting for the person who is supposed to play with “Gubby”, 10 September, at the play observation session, to contact us. She is supposed to come and meet him, here at home, so he will be relaxed and recognise her, in September. It was said that she would come here in June, but we have no date yet, and my June schedule is already filling up fast! To say the least, I feel quite fed up with them. And the circus has already started concerning my middle son, of the three youngest. Now he is being tested. Lots of meetings planned in for him. Things about my boys, keep coming up in posts, not really about their disfunctions, so you might want to check the tags for updates.

  8. You are very welcome back!

  9. I am sure there might be forums which discuss Autism but I have not looked in to it at all. Sometimes forums can be helpful, but on the other hand they can also tear one down, if one starts comparing. One child is never like another, no child with Autism or ADHD behave quite the same way. And to me, when I took a course in strategies for ADHD, I just got frustrated when I discovered how little my child’s school does and other schools do! To sit and know what could be done, if at the right school so to speak, was more painful than helpful! And I also discovered that MY child was not really like a lot of the other children described. So yes, forums can be great for moral support but sometimes they just make you mad!

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