Hi this is my first post. What has struck me after having a little read around is how similar other peoples stories are to my own and the late diagnosis of girls, year 9 seems to be the year where things become unmanagable and unbearable for our daughters.
My daughter has always been a very sensitive child, she was very clingy as an infant and had separation anxiety. She's always been a home bird too and an avid reader. She has also always had a certain repetitive behaviour, skin picking, she did this thing seperating her hair and running a strand of it through her teeth, nail biting.
She excelled academically and had friends throughout primary school, went to brownies, karate etc. She hated things like school discos and family parties and was obviously uncomfortable. She also had an average one day off school every 2 weeks where she would feign illness (very convincingly) her reports always said that she was very quiet and she should put her hand up more. Her sleep has always been a problem, even when she was up early for school she would struggle to sleep, one time when I managed to get her to stop picking scabs on her skin she transferred the behaviour to her bedroom wall and picked hundreds offlecks of paint/plaster off which is better than her skin. She would also get very embarrassed quite easily, if she felt she had something wrong and it would really upset her. She's such a good girl but a conformist who hates being late or doing anything wrong, not really able to go what the heck I can let that go, or brush things off easily, things would worry her. Throughout school teachers have affectionately described her as quirky and say how much of an individual she is, never follows the crowd. This has come up with different teachers. She is a talented artist too. She has a real affinity with animals, loves the company of family pets.
She started secondary school well, achieved very highly, made new friends as well as hanging out with old friends, but she shunned all social media, and would prefer to be at home then go out. She's very kind and very fair, and generally an absolutely lovely person. She excelled all subjects, but has a flair for English and Languages. Also her peforming art performances have been described as breathtaking. She was methodical with her homework. She's also hated being late for anything and is quite rigid in her thinking and if she decides she doesn't like anything i.e. a tv series she would not watch it, she sticks to her decision. She would also become immersed in whatever she was into i.e. favourite book series, films.
Although she seemed fine at secondary school she found the crowds of kids at the bus stop too much and chose to go to a previous bus stop to all her friends and get on the bus earlier to avoid the crowds. This coupled with not keeping up with what was going on with the crowd via whatsapp she wasn't as involved in group social outings or joining in basically, but in school she was well liked and had friends. Fast forward to the very end of year 8 which was July 2015 she started having anxiety attacks and then we broke up for the summer, come the beginning of year 9 and everything basically went to sh*t. Her anxiety attacks triggered by going to school were severe, she would be hysterical, collapsed on the floor, struggling for breath. By this point I was dropping her to school, her sleep cycle reversed, she started self harming.
She had a referral to CAMHS, and had an initial choice appointment 8 weeks later, it was an hour and I didn't get to speak to the psychologist as my daughter wanted to speak on her own, she has always been completely unable to communiate what is going on in her head to me, yet she can to a stranger such as a psychologist. The result of it was that she recommended CBT that they couldn't offer and she would be put on a waiting list. I was tagged in at the end of the hour and she said that she had identified a risk and my daughter felt suicidal and to remove all sharps that were accessible. It was so devastating to hear my baby felt that low and she was really desperate for help. I said I suspected ASD and could she be assessed.
Basically after that appointment my daughter was lost in the system as they were restructuring and staff were being redeployed and services offline for the 4 months. Things got worse, the self harming got worse, the depression got worse, she completely withdrew from school. She found it very difficult to leave the house or get past the front door and on many occasions has been completely unable to leave the house. She hasn't gone out independently or without supervision for the last year. Not even to the corner shop.
I ended up taking her to A & E due to how low and suicidal she felt, that's a whole other story but again we were let down, after 10 hours and being assessed by 2 doctors she was to be admitted, we waiting hours and hours but there was literally no beds available and we were told she would have to sleep in the triage ward, then the hospital psychiatrist came along and said she wasn't high enough risk and wasn't going to act on her suicidal feeling and discharged her with the promise of an automatic emergency appointment within a week, I had to chase this and set it up myself as it would never of happened. I kicked up so much fuss and made a formal complaint and things finally started moving, she saw a psychiatrist and a new psychologist. She's on medication now which as helped and on the waiting list for neurodevelopmental assessment, psychiatrist has said she is atypical of ASD. She has also just started after a year of no education on a reduced timetable in a specialist school for children with mental and emotional and behavioural difficultis key stage 4, currently on role are 86 children in the whole school.
I have just applied for DLA, I found filling in the form so depressing but it's done now. I am a single mum after splitting with my children's father 2.5 years ago. My elder daughter who is 18 years old is registered blind and on a gap year before starting uni next september. Sometimes I do feel quite overwhelmed but I have two wonderful beautiful daughters and I count myself very lucky to have them.
I have worked in learning support roles in education and I currently work with in adult education and I support a lot of learners with a variety of learning needs including autism. I work flexible part time hours as I'm in a learning support pool, so I can pick what classes I can support which is great. Bizarrely going to work has been one of the things that has helped me to get a break even when supporting learns with autism.
Things are looking up right now and we are in a much better place as in the right medication, the right school placement (started 3 days ago on Monday) very early days with that. Managed to reverse the sleep cycle back to normal which has made a huge difference. I think we are still a long way off from any independent outings for my daughter or using any public transport.
I realise I've gone on but once you start typing it's quite theraputic to put it all down.
It would be great to talk to other parents on here.
I'm just editing this as I've read it back and also another thing I want to add, to see if other peoples daughters do the same thing is the lack of understanding about personal hygience and not seeing the importance of it. When your children are little it's normal parenting to bath them and be in charge of when they wash but as they get older and you expect that they become independent in showering/washing their hair without prompting. My daughter would not shower or wash her hair unless told to, she would go a week and not give it a thought and she will put on dirty underwear again the next day unless I take it out of her room for washing.
Secondonly how common is sensory issues with other peoples daughters, my daughter hates the idea of make up on her skin and explained it that she feels it would block her skin and it's horrilbe, she has never worn and never will wear make up which is absolutely fine. But she also began to hate the feel of her hair on her face and neck and tried to hack it off one night after finding some scissors. She didn't think I would let her get a short hair cut but it was fine and she had it cut into a pixie style that really suits her.
