Sorry in advance for the long post!
My daughter is 13 and has just started year 9 at school. I believe she is autistic but she does not have a diagnosis yet.
She has always had sensory issues and the need for routine since she was tiny, but on the whole she thrived at primary school except at the end of each school year when her anxiety would became very bad worrying about a new teacher etc. she would then settle again a little while into the new school year.
Everything seems to have fallen apart since secondary school. Her anxiety is terrible particularly in the evenings at bedtime (she is mainly worried about dying in the night or something happening to me whilst she is asleep) and she keeps everyone in the house awake for hours by crying, shouting, screaming, calling out etc. She has a long elaborate routine of checking her room that she wants me to do over and over before she even tries to sleep.
She has a nice group of friends at school (some old ones from her primary and some new ones) but finds friendships hard to navigate, struggling when people fall out or are unkind about others behind their back. Her best friend from primary school has a new close friend which she finds incredibly difficult to understand and feels she has been replaced.
She is at the smallest secondary school in the area but is struggling with the busy corridors, the noise, different teachers and unpredictability etc. she's refused to go in on many a day which is a big problem as I can't leave her at home on her own at all (she won't even walk to another room in the house without me going with her and checking everything is safe first, so she wouldn't stay on her own for even 5 minutes let alone a day) so I have to take time off work each time she refuses to go. My work aren't understanding and as a single parent with a mortgage to pay it is a big worry for me that I could lose my job from too much time off. When she goes in, the overwhelm when she gets home is awful - meltdowns, screaming, shouting etc.
To add to problems at school, home life has been unsettled for the last few years. Her dad and I got divorced, the family home had to be sold (which she found incredibly hard as it was her safe space although she did also have anxieties at bedtime there too but nowhere near as bad as they are now), we had to move in with family for a year and have finally got our own home now. It took so long to find somewhere to buy as we needed to be within walking distance of school as she tried getting the bus when we were with family (they were 45 minutes from school) and she just couldn't do it. She struggled to cope with the noise, teenagers vaping, how busy it was, sitting next to strangers etc.
I saw the assistant Senco at school last year and discussed what was happening. They agreed that it sounds like she could be autistic and recommended asking the GP for a referral to CAMHS and a referral for an autism assessment. The GP hasn't even seen us, I got a text from the surgery with a link to self refer to CAMHS (we are still waiting for an initial appointment with them) and that there are large delays for autism assessments and they couldn't tell us how long it would even be before they even considered referring her.
School have given her a student passport so that teachers know she is having problems but I've never seen a copy of what it actually says. She is allowed a fidget in class, she can leave class 5 minutes early before lunch to miss the queue and busy corridors, and can take a short break in class if needed. She has seen the therapy dog and has had some sort of talking therapy in school. She doesn't want her friends and other pupils to know that she is struggling so she doesn't always want to accept help incase people think she is different.
Things have got so much worse over the summer holidays. She keeps her youngest brother awake until very late at night and so he is permanently exhausted, and her older brother is struggling to concentrate on school work because of the meltdowns and shouting from his sister (he is year 11 so I worry about the impact on his work ahead of his GCSEs). He was in tears at midnight last night because he is so stressed out with how she is at the moment. I feel that there is never any calm or happiness in the house anymore. DD is always unhappy with anxiety, overwhelm after school, worries around friendship and feeling bad about herself as she has put on a lot of weight over the last two years and she doesn't like the way she looks now.
I've requested another meeting with the school to see if there is any other support they can give to DD and to make them aware that eldest DS is struggling to concentrate on his schoolwork and GCSE study. School have emailed back and asked if there is anything specifically I am hoping they can put in place. I have no idea what they can offer or do which is why I asked to meet with them. Is there anyone whose children have had similar struggles where school have put things in place that helped? Is so what did school offer? It would be really helpful to know what sorts of things the school might be able to offer so I know what to suggest or ask for when I meet them.
Sorry for such a long rambling post. I just feel lost and don't know how to navigate all this on my own. I am permanent tired averaging 4 hours sleep a night - DD came into my bed at midnight last night after trying to sleep in hers since 9pm and spending most of that time shouting to me or at me. She finally fell asleep for about 4 hours before waking me after having a bad dream that I had died.
She sees her Dad but he has no idea how bad things are, he thinks she's just a bit difficult and a typical teenage girl with mood swings. She generally won't stay at his house overnight as she says the bedding feels wrong, the house makes funny noises etc. so she sees him every other Saturday for a few hours and then is back at home with me the rest of the time. Her brothers do stay every other Saturday night so they do get a little break which helps them. Youngest son's school have been helpful and he sees the therapy dog each week and has been referred to young carers to see what they can offer support wise.