– A true story
I lived alone with my children when they took ill and then even more ill. They did not have the energy to go to school every day. They missed out on a lot. First one child. I took him to a child psychologist at the child psychiatry services. Every week for months he went to talk to the psychologist. I had meetings with a clinical pedagogue at the child psychiatric center at a regular basis for 3.5 years.
My son did not get better by seeing this psychologist. The psychologist then quit and my son quit too. My son wasn’t well. He did not have energy for school. He did not have energy to do anything else, not any of the things he used to do; play in school band, rock band, meet friends, laugh, or be outside. He was in pain. We went to se the doctor. Again. And again. He could not figure out what was wrong, nobody could figure out what was wrong. We got a new referral to child psychiatry services. They came to see us this time. My son did not have the energy to leave the house. He couldn’t stand sounds, light, but he wanted to get well, he would do all he could to get better. Doctor and psychologist came, twice a week, to talk. Often, I went to work when they came, I wouldn’t disturb them; I left them to do their job alone with my son.
Then the little brother took sick. He was in pain, he did not have the energy to go to school, he was pale, tired. The doctor and psychologist weren’t able to treat little brother. He did not have the energy to listen to people who told him what to do, he did not have the energy to expose himself to all these demands he could not meet and live up to.
Little brother was admitted to the psychiatric ward. We spent months there, with a multi-disciplinary team, answering questions, examinations, trying some school, trying to expose him to his old school. For months we were like fish in a fish tank and we were studied by the professionals, torn apart in their closed multi-disciplinary meetings and studied again. Little brother got sicker. Paler, he did not have the energy to talk much. He did as he was told when he had the energy, but said: «this is wrong, it’s not working, my body is sick». Functional pains, the team said, and disregarded the pains.
After the months in the fish tank, the whole case ended up in a big meeting where I came alone, and twelve professionals sat around a table. They had just finished their pre-meeting. They would extend the stay, 24 hours a day, over an extended period of time. I don’t think so, I said, -he is not getting any better, I want to know what you think might get him better.
The senior doctor had never met little brother. This was the first meeting between him and me. He wrote a letter to the child-protection services and asked them to consider removing the boy from his mother. The letter was angry, unfair, and the social services had had other letters too, from school, from child psychiatry services and all the letters said that they were all worried, but did not quite state what the worry was all about.
The child-protection social worker had been to our home, because after some of the letters she had received, she came to see us. She talked to big brother and little brother, and to me, and she did not quite know what to do with this case either. After the first two or three letters, she had a few meetings with me and other professionals I wanted present, to ask if I needed help, if they were to start PMTO (Parent management training – Oregon-model) – help with better interaction in homes, they could offer this, but honestly they did not have anything else to offer, and if the fact was that the children were sick they could not do anything to help us.
Child psychiatry services wanted to admit big brother to youth psychiatric ward. They asked him to pack his bag, took him away, and I, – I did not know when I would see him again, but maybe he would be better!
He came home the very same afternoon; he did not qualify, he wasn’t mentally ill enough, the people at the ward thought. He did not want to kill himself; he did not want hurt anybody else either. Child psychiatry services was very sad, and had already the same afternoon that big Brother came home with his bag sent another letter of concern to the child protection services.
The school also sent letters to the child-protection services. At first, the school did not inform me, so I kept getting letters and phone calls about these concerns from child protection services. When I asked the counselor at school, and the teachers sending the letters, why they never talked to me first, it had never occurred to them, and – oh, no, do not regard this as criticism, they did consider me the best mom in the world, but when big brother and little brother did not attend school they had to send these letters of concern, and they were certainly not meant as criticism.
It did feel it like I was being criticized. I was devastated. Every single one of these letters pulled me further down into despair. My lovely, fantastic, beautiful children, they were in pain and they never got better! Nothing worked. This took all my time, filled my consciousness, shook me and disturbed me, all these letters of concern which kept pouring into my boys’ files at the child-protection services office.
I never got used to this. I was off balance a few weeks after each letter of concern, then for a few days after each letter, and during these days I was a frightened and sad mom. A mom who doubted herself, doubted these paid professionals that were supposed to help, in my experience they turned against us, I doubted that there would ever be any help.
In spite of both brothers being diagnosed with ME, the same policy continued, then eventually, a gastro-doctor discovered a potentially lethal disease in little brother’s gut, this disease had made him suffer all these years. None of all the doctors we had consulted had discovered this, even though he had been terribly sick the entire time.
When little brother was to get his rightful homeschooling, the school asked him to quit. They claimed they did not have the resources. The special-education professionals were firm and clear towards the school; this was his right. The day after the meeting with special-education services and the school, the school sent yet another letter of concern to the child-protection services, really without a clear concern, except my boy’s absence from school and a great general suspicion towards me as a mother. They would not clarify what this was all about when asked to.
We still wanted help. When a child is too sick to be moved, and help has to be administered at home, you do not have a choice of hospitals or wards. Home visits are only being given by the local child psychiatry center.
This time, the psychologist who came to our home was young and inexperienced. She used the few meetings over a period of 6 months to fill in forms; how often was he sad, did he consider suicide, did he want to hurt himself. She left the forms as homework for him to fill out on his own. The forms were laying there when friends came by to visit. These friends happened to be schooled in psychology. They were furious when they saw these forms. The forms were actually intended to use on adult patients, and little brother were far from being an adult. They were supposed to be filled out by the psychologist after sessions, not by the patient. They wanted to report the psychologist, but I told them not to, I just wanted this to work, I wanted my sick boys to get help and get well.
Little brother couldn’t handle any more visits from the young psychologist, he couldn’t see the point. I told the psychologist that I were sorry, we can’t use your help any more. A week or two later, the child protection service called me to tell me that the psychologist had sent a letter of concern, not clearly stating what the concern really was. They had tried to get her to explain further, and she had not been able to do so, so obviously there still was no case. In addition they had gathered information elsewhere, information that confirmed that I was a far better mother than average
And if this is the case – that I am a far better mother than average, I wonder why my children has these thick files at the child protection services? A lot of children really need the help provided from social services. I do not think that my family has problems that justify all the time social services has spent on us. I have had concerns myself, I have been upset, I have even been afraid that there would be something wrong with us that would come out into the open when the social services looked into our family. Hours, days, weeks have been spent by professionals to send letters and receive letters of concern. After 8–9 years of having ME, the boys still have not received any help that has actually worked from these professional helpers. Quite the opposite really.
For how long are the professionals allowed to be concerned and puzzled over something they do not understand instead of realizing that some conditions actually do not fit the regular procedure, but instead they need to show understanding and respect?
In an interview, talking about diagnostic tools for ME, dr. Nigel Speight said “In practice there are not that many conditions that mimic it (ME) very well in pediatrics.” Why is this so difficult? You can find this interview and several other interviews with dr. Speight here
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