Stories - Life with TS

Linda’s Story

I think I knew the moment Jenna was born that there was something not quite right, call it mothers instinct.

Jenna was born screaming, a healthy set of lungs I was told. Whilst all the other babies were taken to the nursery over night, I was put in my own room and was allowed to keep Jenna in with me (in normal circumstances this would have been ideal). She cried day in day out - nothing would pacify her. This behaviour carried on at home. My husband and I would walk the floor with her, whilst the other tried to catch up on a bit of sleep.

Age 3 weeks the first of many visits to our GP I was told I had postnatal depression and they would contact social services to have her placed with another family 2 days a week. I told him in no uncertain terms what to do with his advice, it was my third child I didn’t`t have postnatal depression and we would cope.

Age 3 months our first nights sleep (well a couple of hours of uninterrupted sleep). The reason being Jenna had leant to roll over. This seemed to stop the constant crying, she had something to occupy herself with. It didn’t`t last long - as soon as she was bored with that, the wailing began again, the above happened at each milestone she went through.

Age 2 - started funny little habits.

Age 3 - began nursery. I was concerned about this as although she had been to playschool and was used to other children, she was very distracting throughout her 12 month spell there. I often inquired about her distracting nature but I was reassured she was fine.

Age 4 - open day for children due to start school after the summer hols. I was asked to go to the headmaster’s office where I was made aware of a report sent by the nursery. The report stated that Jenna was sent to sit alone in another room at story time, and on other occasions because she couldn’t`t sit still, and was a distraction to the other children who attended. To say I was upset about this new found information is a understatement.

Within a week of Jenna starting school the school showed concerns towards her smelling things. Went to the doctors, was sent away as a over anxious mum.

We went from smelling to licking to touching, then back to smelling, and so it went on in a 3 month cycle.

Age 6 Jenna started spitting. The school once more showed concerns as she was upsetting the other children if she happened to spit on their clothing. They were getting complaints from parents too. Back to the GP to be told children have habits, and she would grow out of them when she reached the age of 7. I tried explaining the unusual nature of these habits, the consistency and the cycles, to no avail.

Age 7 Jenna started making donkey noises. This time the school wrote me a letter to give to my GP outlining their concerns. This did the trick the GP was listening to me. He then excused himself to make a phone call. He came back in the room and handed me a piece of scrap paper, and said this is what your daughter has got. Gilles De La Tourette syndrome - it was foreign to me I had never heard of it. Judging by his reluctance to answer my queries, I don’t think he had either, as he was more or less rushing me out the door. He told me a child psychologist would contact me in the next couple of days.

I went home and cried. Days went by, and no contact from this so called psychologist, so I rang her and rang her numerous times. Each time I was told she would contact me after 4 weeks. My hair began to fall out so I went to her office, to be told again she would contact me. But they did give me a piece of information - the address and tel no of a support group in London. I rang and rang no answer. My husband was working in London, so agreed to call at the given address only to be told the association had moved on 2 years previously.

The psychologist arranged a appointment with us. By this time Jenna was lighting fires and trying to touch anything hot. She told us that this behaviour wasn’t tourettes, and she should be chastised for it. I asked for information on TS and she told me I didn’t`t need information at this time, just to get on with our lives as normal, and she left.

I eventually got the address of the TSA and was horrified to find out that the info she had given us was wrong, we had been chastising Jenna for things she couldn’t help.

The hardest and most difficult phase in our life’s as a family, was to follow. Jenna began swearing. My husband couldn’tt tolerate this, and wouldn'tt believe she could not help it. He shouted at her, sent her to her room, we then came to a compromise that if all his shouting and sending her to her room didn’tt alter things by the end of the weekend, that he would accept that she couldn'tt help it. Of course the swearing continued. We were told to leave the supermarket, put off a bus because of it, asked to leave the library. I wrote letters to all concerned explaining - I never received replies.

The school was brilliant. Jenna was now not only swearing, she had people in her body, a monster, a witch etc. She insisted we call her by her sisters name, and that she dress in her sisters clothes so she could fool these people inside her into thinking she was somebody else. So it went on until she got God inside her. She couldn’t`t fool him because she had been taught at school that He knows everything. These people started to interfere with her school work. They would tell her to put down the wrong answer, so she would start arguing with them because she knew the right answer. This led to her stabbing the pencil in her work. The school needed help, but after constantly seeking advice, and info from the psychologist with whom they never got a reply, they brought in the educational psychologist. Once he had got to know Jenna and gained her confidence, got her to draw the people inside her, then told her he would burn them - this seemed to do the trick, until he asked her one day what she hated most. Spiders. He got her to draw a spider, then told her that everytime she suppressed a tic, the spider would lose a leg and eventually it would have no legs, and would die, and her tics would die with it. But everytime she did a tic the spider would grow a leg. She returned from school, her tics worse than ever - she thought the spider was inside her and if she didn’t tic the spider would lose all its legs and die, and because it was inside her if it died she would die too.

Age 9 Jenna was after trying numerous meds that didn’t have any affect, she was put on Amitriptiline to help her sleep. At this time she had numerous tics - her knees were bandaged they were so sore and swollen from the constant banging of them together, her arm was in a sling to help stop her throwing it out, she wore a neck collar because she had pulled the muscles in her neck. You would see her with a cushion strapped to her bottom because she couldn’t sit down without constantly jumping up in the air and landing back down on her bottom, so it was decided to put her on this med to give her some rest through the night. 3 days later we found all her legs were covered in bruises the GP came and had her immediately admitted to hospital he thought she had Meningitis. They sedated her at the hospital because she was so loud, tested for meningitis which came back clear. Said she would be kept in for 3 to 4 days while they did tests to find out the cause. The following morning the doc was on his rounds came to see were all the noise was coming from, and discharged us. I was so angry I filed a complaint. 2 days later I had to call GP again she was sweating profusely and fitting. The hospital agreed to take her back for the night, on the proviso that she was placed at another hospital the following day. They could not tolerate the noise and it would scare the other children.

Jenna was admitted to a hospital in Manchester on a children’s psychiatric ward, an hours drive away. She was there for 11 weeks until we discharged her. In that time they did ECG, CAT scan, blood tests. Somehow managed to lose the results for them all. We endured family sessions where I walked out on all three occasions, after the family were blamed for Jenna’s condition. I wasn`t a fit mother, said there were things going on in the family that weren’t. They didn’t have a clue what our family life was like, what living with a child with TS was like, and I wasn’t prepared to listen to their assumptions. Jenna was put in a room with two older girls who described in detail to Jenna how they had tried to commit suicide. At this stage Jenna was repeating things heard on the TV, doing things she saw other people do, so the room mates were not a good combination. One of the boys there had put his hand up her skirt (although we didn’t find this out until much later), and the last straw was, at different times in her life Jennas whole body starts to tic. She looks as though she is having a fit but the difference being she doesn’t go unconscious. On one such occasion her roommate age 11 ran to tell a nurse. She was told to put a mattress on the floor, put Jenna on it and sit with her. The nurse didn’t even check on her. I was sick of complaining and getting nowhere. We decided the hospital was doing her more harm than good, so we discharged her.

My GP let me read the report sent to him. They wrote more about me than Jenna, saying I was neurotic and had psychological problems.

Age 10 November - Jennas school could no longer cope. She was sent to an Emotional Behaviour school. The school cost education, inclusive of transport, around the figure of £5000 a term. It was a boarding school for boys with only one other girl there. She had a 2 hour plus journey to get there. It was the only school that would accept her. We were assured by the staff that they were used to dealing with this illness, and that on no occasion would she be punished for her behaviour. Come the second week Jenna wasn’t allowed to go swimming and join in other activities. Instead she was made to sit outside the head teachers office and do her work. When I complained, they said the swimming baths had had complaints from the public about her noises so she wasn’t allowed to go (but wasn’t this a school used to dealing with this?). After two months of this kind of behaviour, her being constantly told off and made to stand in a corner because of her noises, I kept her away from the school and only sent her back through pressure from education threats that we could have her taken from us.

January - Jenna had to go into hospital for a operation on her ankle bone. She was told to take 2 weeks off school - although the school knew this they constantly harassed me to send her back. After the 2 weeks the scar below Jenna’s ankle was still very sore, and she wasn’t able to wear a shoe. I was assured this wasn’t a problem, I could send her into school with 3 thick socks on to act as protection instead of wearing a shoe. Jenna came home that evening sobbing, they had made her remove the socks and wear a pair of their school shoes resulting in a blister across the scar area. I took her straight down to our GP so I would have proof of what the school was like. I refused to send her back. Meetings upon meetings with the school and the local education resulted once more in having me branded incapable of looking after Jenna.

The school got intouch with our social worker and insisted she be placed in a children’s home. Luckily we had had the same social worker since the onset of Jenna’s problems. She had no doubt that we were capable of caring for Jenna, and our GP also had no doubt, so education put in a teacher so Jenna could be taught at home.

Home tuition - I work locally so I would pop home at break times only to find the teacher feet up on settee, drinking tea and eating toast. Jenna sat quite happily watching TV. I didn’t dare to complain further and at least it was better than Jenna being at that wretched school.

Age 11 Jenna admitted to another phchiatric ward in Leeds to be put on new meds. They wanted to try meds she had previously been on. I couldn’t see the point in that they hadn’t worked before. I asked if she could be put on risperidol, they reluctantly agreed. She was in hospital 13 weeks until the med kicked in and began to work. We had found the right med at last.

A local school was approached to take Jenna. They accepted her. We went to visit the school on open day, and was mortified when the special needs teacher refused to speak to us. We later found out that she had been over to the EB school, and after meeting with them the school said they could no longer accommodate Jenna. We put in a appeal - I was fed up of all the accusations that were being thrown at me. I had to fight both for Jenna and myself. We won the appeal, and although the school has never admitted outright that the EB school wrongly accused me of interfering and being a incompetent parent, they have hinted. I have had no reason to complain about this school because they are meeting my daughter needs and that is all I ever wanted. My only complaint about education is that they say Jenna has a learning disability of approx 2 years (the amount of time all in all that she was in and out of school). Jenna didn’t have a learning disability upon leaving her mainstream junior school age 9, so I believe it is through the education’s incompetence that Jenna has now got a so called “learning disability”

Age 15 although Jenna now has very mild tics, so mild you wouldn’t notice them - fist clenching and eye blinking, we are left with behaviour problems which I believe is tics manifesting themselves as behaviour and OCD.

I would like to finish on the note that our family has stuck together though this. We are still fighting and will go on doing so to meet the needs of our daughter. If I am branded for being a incompetent, interfering, neurotic mother who cares greatly that her daughters needs are met in a loving sympathtic environment - WHO CARES? LET THEM SAY WHAT THEY LIKE ABOUT ME - MY FAMILY AND FRIENDS KNOW THE TRUTH.

Linda Sykes (a loving mother who only wants the best for her daughter)