Where to Even Start...
You've not had the pleasure of my waffling on for a while. I fell down a bit of a hole for a while but, to paraphrase Elton John, the bitch is back.
I'll separate this into 'school and mental health' and 'menopause stuff' to save you reading all of it if you don't want to. Also, big big trigger warning *****this blog talks about suicidality**** please do not feel compelled to read it if you do not want to or if it might be distressing for you. As always, I overshare in the spirit that it might be useful to someone.
School and Mental Health
My most pressing issue is that my incredible daughter continues to have just the shittiest time. She has always found school difficult. All of it. The learning, the social demands, the sensory demands. Just all of it. When she was little we just took the view that she is simply awesome and she is who she is. This is still very much our belief. As time goes on and we gain a more detailed picture of the challenges she faces we have secured a statement of educational need for her. This required us to go to tribunal and spend 10k on solicitor fees and independent assessments. Arguably, a trip to tribunal can be achieved more cheaply. However you do it, it is not for the faint hearted. It was a few years ago now, I'm almost over it.
She attends an independent specialist provision. She joined in year 5. There were 8 kids in her year group. It was a hellishly hard year. She struggled enormously with the lack of structure at breaktime and lunchtime. She was also the only girl in the year group. The boys were delightful but her interest in shooting things with sticks was extremely limited. She described feeling unsafe at school. I don't think she was referring to a safeguarding issue specifically, more a lack of safety relating to unsupervised periods during the day. So basically, we kept her in school that year by bribing her. I drove up to school every lunchtime and we sat and ate sandwiches in the car together. The bribe was that if she could just get to the end of the year she could have her own dog. She did make it to the end of the year. She got her own dog.
Year 6. The year group expanded to 12 kids. She coped absolutely fine and best of all, another girl joined the year group. She didn't just cope, she blossomed. She describes year 6 as her best year. It's the happiest we've ever seen her.
Year 7. The year group grew to 24 kids. The difficulty for independent schools is that, despite their charitable status, they run as businesses and the bottom line is profit and this means bums on seats. It was a bit more demanding for her but she still coped okay.
March of year 7 covid. Yay. The gift that keeps on giving. We all got covid and for my daughter's dad this was a very big deal indeed. She spent the rest of year 7 learning online, which to be fair to her school they did really well. She struggled to engage in online learning because her dad kept nearly dying. I would not be remotely surprised to learn that she has ptsd from this period.
Year 8. Home was no longer a 'safe place' because of the anxiety around her dad's illness. She returned to a school that was unrecognisable. So school wasn't a 'safe place' either. Her favourite teachers were gone. Her favourite subject was gone. Her school used to have a very relaxed approach that meant staff used to take their dogs to school. Most lessons would involve the presence of a dog. This is extremely soothing for my daughter. She is a big fan of dogs. I get that not all kids are but for my daughter the company or presence of a dog is deeply therapeutic. There was also the small matter of the year group now numbering 48 kids. The sensory demand was just too much. All this was pretty challenging for her. She'd been back a fortnight and her dad was admitted to hospital with sepsis in response to picking up a cold my son brought home from his school. The rest of year 8 really was a bit of a write off for her, with the exception of the best 1:1 teacher in the world. The best 1:1 teacher in the world comes over and walks our dog with my daughter when her mental health is too poor to engage in learning. She has been absolutely incredible in maintaining a connection with my daughter during the toughest times. I will be eternally grateful to the best 1:1 teacher in the world.
Year 9. Strap yourselves in for this one. She managed 3 days! Usually, she is able to dig deep and will have a decent couple of weeks at the beginning of every term and then crash and burn towards the end of term. The year group has stabilised at 48. Still no dogs at school. Don't know what changed. Maybe dogs are a covid risk? School introduced a complete change of uniform. She really could have done without this. The new uniform is all branded to death and only available form the school uniform shop rather than just generic school colours. It also might be another brexit bonus (at time of writing the UK is enjoying transport difficulties due to shortages of HGV drivers and fuel shortages) but I've really struggled to source the sensory friendly clothing that's usually available in M&S and quite a few supermarkets. The sensory friendly clothing is free from labels and 100% cotton. Not really rocket science but apparently non itchy clothing is a specialist area.
Her first two days in year 9 were spent in the classroom of the best 1:1 teacher in the world (I might abbreviate this to B1:1TW for ease of typing but it might get confusing), learning but not accessing lessons in real life. Day three she went to some lessons. When I picked her up I enquired about her day. 'Good' was her reply. Amazing! Thrilled, I asked her what was good. 'Oh, I only had one panic attack today'. Seriously. Just the one panic attack is how we measure a good day?
It's inappropriate and would be neglectful parenting, in my opinion, to continue to expose her to such high levels of stress in a wholly unsuitable sensory environment. I contacted the local authority who hold her statement - her school place is funded via her statement because 4 years ago no suitable provision was available in our local state schools, I suspect this remains the case. I asked the local authority how we can best manage her transition into learning at home. This is often referred to as 'home education' and 'education other than at school' amongst other things. I'll probably use terms interchangeably and incorrectly. The lady who oversees home education for our local authority seemed a bit surprised when I asked how my daughter's dad and I would be monitored and supported to educate her at home. She explained that the local authority regard home education as a 'parental choice'. I explained that in our case, it will be 'parental desperation'. It would be grossly irresponsible for a local authority to lose sight of a student who has a statement of educational need (or EHCP). A statement is a legal document. That our educationally complex and vulnerable daughter who faces mental health struggles and neurodiversity could just disappear from the system is alarming. Her dad and I both have teaching backgrounds. Without wishing to toot my own trumpet, I was an excellent teacher back in the day but teaching my own daughter would be a huge conflict of interest and would not be in her best interest.
Our current situation is that no one was very keen on going back to court to revise my daughter's statement so the local authority and school have come up with a very sensible and pragmatic approach. My daughter's 1:1 lessons have been increased. The LA have forgotten to communicate this to us but fortunately this plan has been shared by the best 1:1 teacher in the world. Some information may have been lost in translation but the best 1:1 teacher in the world thinks the LA has an expectation that my daughter has additional 1:1 lessons as well as attending school in person. This kind of misses the point of the challenges she faces. Anyhow, her annual statement review is in November, I imagine all will become clear then...
My daughter has been waiting for neurodevelopmental assessment for 4 years. Every professional who works with her asks 'is she on the autism spectrum?' The neurodevelopmental team bounced back referrals made by their own colleagues in CAMHS (children and adolescent mental health) and a SaLT (speech and language therapist) who works in the ND team. Then, they lost a referral made by the community paediatrician. You honestly could not make this shit up! Four years of pure incompetence and a bit of 'oh but covid' later I submitted a complaint and miracle of miracles my daughter was invited for an online assessment within the week. She has had the first of three, quite lengthy, online assessments. Already, for me, this has been illuminating. I've always been aware that the effort she puts into coping, trying to fit in, masking is immeasurable and is achieved at enormous emotional cost and physical exhaustion. What I hadn't fully appreciated, is that she has not changed. Ever. She has always been who she is and how she is. Her sensory and learning environment has changed. She hasn't changed. She isn't the problem. Her environment is the problem. I know this should be glaringly obvious as her parent but I have spent her entire educational life trying to bash a square kid through a round hole.
She has been known to camhs for a number of years. She often wants to be dead, has done since she was about 6 years old. She's 13 now. Tends to peak during times of high stress and always school related. Her wanting to be dead has always been considered 'low risk' because she has never got as far as planning. More recently, she has come up with a couple of plans. This is an escalation. She was supported by a counsellor back in February. He was a very nice bloke. He had a monosyllabic sobbing child who refused to turn her camera on for six of the eight sessions. At the end of their time together he felt that she would benefit from working with an autism specialist (despite her absence of diagnosis or assessment) and he recommended that she have a psychiatric assessment because he felt her presentation was indicative of clinical depression. He was very cautious in discussing this with me because maybe there are parents who are very against the idea of medicating their kids with anti depressants. I get this. But, for me, I would always rather a medicated child than a dead child and the discussion would be redundant in the event that she were diabetic, for example.
The counsellor made his recommendations to the clinical lead for camhs who agreed in the multi disciplinary team meeting that my daughter met the criteria for psychiatric assessment. This was February 2021. In June 2021, my daughter had a review, where the recommendation of the counsellor that had been agreed by the clinical lead was rendered null and void and my daughter found herself in a game of mental health snakes and ladders, back at the beginning with the plan being more counselling scheduled for December - not a psychiatric assessment. Our experience of camhs is a sensation I call 'gaslighting groundhog day'. 'What does the NICE guidance say?' I hear you cry. Funny you should ask. It's in the public domain, you can google it (other search engines are available), the evidence based practice guidance recommends for adolescents aged 12 -18 showing depressive symptoms: twelve sessions of cbt (not eight). If this doesn't magic them better send the parents on a course (I've not been on a course). If they still aren't magicked better, throw fluoxetine (prozac) at them. Literally, all drugs barring calpol are used off licence for under under 18s. I had a, frankly bonkers, conversation with the head of service who had no explanation for her department's failure to follow evidence based NICE guidance other than they 'just don't'. I've now escalated my complaint to the trust and the ombudsman because it is completely unacceptable. The last couple of weeks I've been tag teaming with her dad's wonderful carer to keep her busy and ensure she isn't spending time alone in her room planning her demise. To keep her safe, she has lots of jobs. These range from sorting out the washing through to learning how to do tiling (I might regret this particular project) just to keep her busy and safe.
Just to make it about me, I feel incredibly guilty that I can't magic this all better for her. I also feel extremely guilty about how similar we are. Last year, I started studying for an MSc, that's probably a whole blog of it's own. I learned that I am dyslexic and dyspraxic. I feel very guilty about the things I have generously shared with my daughter via our shared gene pool. I often feel sad for my son but I never feel guilty about my genetic contribution to his challenges. As for my daughter's anxiety, I cannot remember ever not having anxiety and panic attacks. Anxiety and depression tend to go hand in hand but I've never felt particularly depressed. People who know me, know I have a history of panic attacks and can probably tell faintly amusing stories of mad and impractical times and places I have been paralysed with fear for no obvious reason. I'm 47, I've had a lot of time to think about it and I think a lot of my triggers are sensory. Crowds especially. Something I've never shared before because I've felt too ashamed and insane, is intrusive thoughts. There I've said it. It's not like the urge to shout 'willies' on a crowded bus, although that would be alarming. My intrusive thoughts are always about not being here. They will appear from nowhere, immediately followed by a tsunami of guilt and shame along the lines of 'what kind of terrible person thinks that stuff' and 'it would be an unforgivable thing to do to my family'. The intrusive thoughts only come when my anxiety is sky high. The guilt and shame are oddly protective factors. Why am I telling you this awful depressing stuff? My anxiety and panic attacks were really okay for years and years until this last year. And I hadn't had intrusive thoughts for a very long time. When I was in my 20s I couldn't be near train stations because the intrusive thoughts were constant. I didn't have a family to feel guilty about then but a protective factor was the guilt about how awful it would be for the train driver. I spent my student years on stinky, slow national express buses because I couldn't be around trains. Going through my daughter's autism assessment has made me super aware of how similar we are. I'm always very cautious about what I share with her because lots of stuff is grown up stuff. I would never want her to worry about my stuff but sharing a very edited version of my stuff might help her to understand herself and normalise things a bit. I explained about intrusive thoughts a bit, not mine, but what they are and that they are thoughts not actions and although deeply alarming they have no power. It seems that her suicidality is intrusive thoughts. But I am not a professional in this area so camhs are not off the hook. It also seems to me that in terms of our fight/flight/freeze response (there are others) not wanting to be here is the ultimate freeze response rather than wanting to actively end our life. Death by suicide seems to be the ultimate flight response. A desperate permanent end to often temporary problems. Fight/ flight/ freeze are not conscious responses to perceived threat. Our brain, our amygdala, does a split second scan and makes a decision based on the available information. Freeze is what the amygdala chooses when we have no power. The amygdala will only go for 'fight' if it believes we have a chance of success because we're all about survival. So, much of these awful, scary threat responses are just our brain doing it's best to keep us safe. In my daughter's case her amygdala is being continuously triggered by her sensory environment every time she goes to school.
Anyway, I couldn't understand why my mental health had taken this horrendous dip apart from well, everything. But usually I can cope with 'everything'. My chronology is poor but at some point in the last year or so, I mentioned to my GP that I hadn't had a period for about a year and a half. Not a big deal since I definitely wasn't pregnant and I've never had anything that could be called a cycle anyway. The GP did a blood test and said, 'you've had your menopause'. It was slightly earlier than average (according to the GP) and I'd not had any symptoms, although to be fair the GP only mentioned hot flushes and night sweats, and I'd had neither of them. Then, over the summer I had the worst period pain ever and a bleed. Only, the blood was in my pee. I mentioned this to a different GP who was super thorough and sent me for every test under the sun. If you have a post menopausal bleed get it checked out immediately as it can be a sign of uterine cancer. Anyhow, I had already consulted Dr Google and decided on balance of probability I had kidney stones. This was correct. For someone who has insane anxiety, I never worry about my health.
I've done a bunch of reading and the average age for the menopause for women in the UK is 51. The highest risk age for death by suicide in women is 51. The drop in oestrogen, at the menopause, causes increased adrenaline, cortisol and anxiety. Anxiety is one of the 34 menopause symptoms. Along with brain fog, which I definitely have. Great time to do an MSc. After the menopause, the risk of kidney stones increases by a third. This is because oestrogen is key in metabolising calcium hence the increased risk in osteoporosis. I'd go into more detail about this but I have brain fog. It is absolutely unfathomable that more is not known about stuff that impacts half the population.
If you're still here, well done! You're all caught up. I'll save the MSc shenanigans for another time.