So Little Miss has been in a specialist unit in another school for the past 3 weeks. It isn’t helping. She is beyond stressed at school and spend much of her time sitting on her TA’s lap shouting obscenities and threats at anyone within sight or hearing.

She is a different child at home. She still stresses, swears, hits out, is uncooperative. But she is nowhere near as stressed as she is at school at the moment.

I had a call from Crap Dad after he had picked her up. She’s poorly, grey, no energy, sad, quiet. Not like her at all. She rarely gets ill like this, as normally illness barely slows her down. I feel bad because my first reaction on being told was relief. Relief that she can have a day off school. That us just bloody awful, especially knowing that she has to be proper poorly to be knocked out with it. My poor poorly love.

We are no closer to getting her into a more suitable setting. Everything goes at a snails pace, with the child, MY child being so far from the center. The school that we visited in the summer us now full, so they are saying that they cannot take her. The Ed Psych has not even met or observed her yet. If we took her out of school temporarily we would be taking her out of all statutory provision, so getting her into a specialist setting would become much more difficult.

There has been no therapeutic input from CAMHS ever, despite their acknowledgement that she has complex needs. I left the last ADHD clinic to cry in my car for 10 minutes due to the complete lack of advice or help. Then the head teacher us being advi to raise a safeguarding alert as Little Miss is not on any medication!

The silver lining is the head teacher in all this, as she is trying desperately to work with us to find a solution for Little Miss. She is NOT going to be raising a safeguarding alert and has advocated for us really well in that regard.

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I feel broken hearted. Little Miss is not coping with school. Another child, or another school and I really think she would have been excluded.  As it is, she is effectively in isolation. She is separated from all the other children, due to her physical attacks and verbal abuse against both children and staff. This is all day long as far as I understand from the conversation I had with the head teacher earlier today.

The school just don’t know what to do with or for her anymore. I don’t see that there are any benefits to her being there at all at the moment. Nothing. She is stressed and in fight mode, unless she sees an opportunity for flight. Her only break from it is to sleep so she conks out in the afternoon .. active dissociation.  She is being aggressive to other children across the board; Little kids, big kids, soft kids tough kids. There doesn’t appear to he any rhyme or reason, but what we do know is that when she isn’t at school these responses are always as a result of feeling stressed. Transitions are a massive problem, not getting what she wants (think toddler), being surprised.

I feel so sad for her and don’t see how we can possibly sustain her in that setting under those conditions. We are in the process of getting her statement amended for her to attend local specialist provision which will be much more geared up to her needs. In the meantime our last ditch contingency plan is to home school. CD doesn’t think we are there and knowing how tough it will be on us we both have serious reservations, but I don’t see how we can leave her in isolation at school. At least at home we would be able to provide more of the sensory play and nurturing that she needs.

Sigh. My poor poor sweet troubled beloved girl.

Within 3 days of starting on the steroids I had gone into complete collapse! Literally couldn’t get out of bed for 1 day and barely off the sofa for about 5. The GP diagnosed a viral infection, but having asked around the AIH community its clear that my poor old body was just objecting to the assault of 40mg of pednisolone a day.

I’m rapidly learning a new language and how to adapt to a movable feast of side effects.  The good news is that my ALT levels have dropped from 400 a month ago to 58. This means the the inflammation of my liver is reducing rapidly, and also that I have been able reduce the pred to 30mg.  Whether it is the reduction in the meds, or that my body is getting used to them (or a combo), I’m starting to feel less debilitated by it. Yesterday I pottered around the garden in the sun all day, without having to lay down or have a sleep. A week ago I needed to sleep for an hour and a half after washing up, having a bath or driving to the docs and back.

There are some things that are ongoing though, so I’m having to keep any eye on indigestion and heartburn. This hasn’t been too bad, but I am increasingly aware that it is a common feature and can cause problems down the line. I’m experiencing massive flushes and sweats, which I thought might be menopausal until another AIHer mentioned this in a post and the penny dropped … It happens about 12 hours after taking the pred so I spend the evening variously drenched in sweat in chilled to the bone! Delightful.

The most invasive side effect has to be the shakes though. I have been shaking for 2 weeks now. Sometimes, when I have been quiet and relaxed it is a small internal tremor, and other times it is full on trembling of every muscle in my body. It is very odd.

I think I might have to stop drinking alcohol. Completely. As in tee total. I am writing this as I sit at a gig, pint at my elbow on a rare night out. I’m only sitting because it’s a bit too guitary for my tastes, but probably also because I got the call from the specialist half an hour before we came out, confirming my diagnosis and letting me know what happens next.

That is lots of steroids, for quite a while, calcium and vitamin D to support my bones, and then a move over to a different medication that I don’t know much about yet, except it has “side effects”. They will need to do tests to identify how I am likely to react to this drug before we start on it. I have to attend a clinic weekly at first.

I think I’m a bit scared.

I’m sad. Sad and a bit grumpy. Sad, grumpy and heart sore. And a little bit hopeless. And exhausted. I’ve had too many days like this recently. I was expecting March to be a a bit sad, what with the first year anniversary of my mums death.

It started with her birthday really, towards the end of February. The unavoidable awareness of my amazing mums absence. We had a family party at her bungalow to celebrate, just like we would have done if she had been there. I didn’t really want to go, but did, and then spent chunks in of time outside tidying up the garden.  As I was passing on the news of the birth of Big Sis’s third child in 2 years to her cousins one if my sisters basically challenged me on my stepdaughters fitness to be a parent very publicly. I left and cried all the way home.

Whilst I was at my mums party I got a stream of increasingly demanding a difficult texts from a friend who has significant mental health issues. I had to send one back to her asking her to back off. She didn’t, and I had two weeks of demands, abuse and accusations culminating in a half hour rant over the phone which seems to have cleated the air somewhat.

Two days later I had arranged to meet another sister at my dads. We had planned to spend some time doing jobs in the garden for him and having a few games of cribbage and scrabble. We knew it would probably be the last time as he was clearly approaching the end of his life. I called in the morning and was told by my sister that he had died in the early hours. My dad has died. He lived in a council house, so we had to move quickly to empty it, so started sorting out his belongings and his garden immediately.

A week later I call the conveyancing solicitor for my mums house to see where we are up to and am told that the buyers are finally satisfied that we have provided everything that we can and we will be completing the sale the following week. This means that all the stops have to be pulled to clear both my mums bungalow and my dads.

We manage all that really well, being supportive and caring of each other. My mothers property is gone, filled with another persons furniture, my dads is now emptied and there is going to be a final meeting up there before the keys are handed over. I have no parents and I’m sad about it.

Along side all this of course is our daily life with the girls. The refusal of CAMHS to provide any therapy for Little Miss; the trial and error approach to medicate her supposed ADHD; Little Miss’s continuing aggression and violence towards Lolly; the failure of the local special Ed unit to help us properly explore the options for Little Miss as it becomes increasingly clear that she cannot remain in mainstream much longer; Lolly’s defiance and utter commitment to being contrary.

The final undercurrent, feeding my exhaustion is an immune system that seems intent on giving me a hammering. On top of the Lupus that I have successfully managed for over 15 years I have developed an autoimmune issue with my liver. I finally attended an appointment with a specialist this week to have it confirmed that I need a liver biopsy .. Next week!

So I am tired and fed up.

That is a bit dramatic really! I had a lovely, relaxed day.  Funny gifts from CD and the girls. A meal out with CD. All really lovely.  Even ADHD clinic wasn’t bad, as I was showered with love, cuddles and kisses from LML, the lovely clinic nurse did not insist on trying to get weight and height and LML was pretty cheerful and cooperative.

I missed my mum so much though. I had realised the day before that there would be no card from her, or no call to apologise for forgetting.  It isn’t a screaming pain anymore. Persistent though, and sad sad sad.

Its hard to write about my mum.  I have lots of titles of blogs, and subject areas, but actually focusing on getting my thoughts and feelings down just seems to be an impossibility.  It is two weeks since my mum died and her funeral isn’t until next Friday. There are so many little vignettes and events, experiences and thoughts. I’ll think “oh I should write about that, but never get much further than thinking of a title and maybe a few words” …

So snap shots and titles it is …

Shouting…
“my mum has died, give me a break” at my 8 and 6 year old daughters.

Distance
Me (text to old friend, who knows all the family, 1 of the two people I contacted on the day mum died, so they didn’t hear it from anyone else) : “Hey love, are you going to be coming up for mum’s funeral? It’s on Friday?. X”

Her: ” yes love. will phone tomorrow to sort out details. hope u ok.xxxxxxxxxxxxxxxxx”

.. All I see is the last three words. … My mum is dead .. I am NOT OK.

Dressing the coffin

Sibling rivalry

The girls

My mum died.

We knew she was dying.  That is the only direction for COPD.  But still. My mum died. 

I went to see her still, cold body on Monday.  I’m ‘glad’ that I did, that I saw her that last time (oh my heart). Bizarrely she looked peaceful – I haven’t really understood what people meant by that until now.  She was absent, but her body, what is left of my mum – well, that flesh that she has left behind looked peaceful.  The confusion, exhaustion, despair and discomfort, the fear and anger.  All of that was gone, leaving her frailty and beauty behind. 

My mum is dead.

My mum had visits from five of her six daughters today, plus two of her sisters and a gaggle of big grandsons with their partners, my two girls and her great-grandson.  Some visited during the day and then the rest of us arrived later and took over the family room in the hospice and has us a tea party.  She was tired out by all the visitors, but had a lovely time playing with the kids and their balloons.  Eating grapes and cake.  Enjoying the antics of her great-grandson.

Mum

She has stabilised a lot since going into the hospice and is ‘well’ enough now, that they no longer want her!  She went in for a needs assessment, and they have not surprised us at all by deciding that she needs full time nursing care.  This means that she can not go home, but will be moving to a nursing home in the next week or so.  One of my sisters has spent the past week visiting nursing homes, and mum went to visit the one coming out best … which literally backs on to her garden!  At the tea party she told me to show the girls her house out of the window, clearly believing, in her general confusion, that she was already at the nursing home.  It feels positive in terms of her acceptance and her memory, that she is already making the transition to the new setting.  We need to get her moved and settling in as soon as we can.

I suspect that she is hoping that she will be able to make a break for it and get home without anyone noticing!

Just over a year ago, Little Miss was diagnosed with ADHD, and we agreed to try her on equasym, aka Methylphenidate hydrochloride. It is a counter intuitive treatment for the symptoms that result in ADHD diagnosis. The theory is that it works because stimulants increase activity in the brain and normally make people more alert and active. The theme for the adoption social weekly shout is ‘one year on’ and I have been thinking about what has changed, and what hasn’t since she started on this medication.

After about 6 weeks of making Little Miss take equasym every day we decided to knock it on the head on the weekends. We started to only give her it on a school day, or when she is at playscheme, so we only really see the effect second hand these days, apart from the tea time crash come down.

For the first term there really was a marked improvement in her ability to focus and engage at school. Her progress in her learning was noticeable, achieving more steps in her pivots in one term than in the previous three. Her behaviour was more manageable as she became more willing to cooperate. Then it was Easter … The combination of her getting used to the meds and the disruption of the school routine seemed to result in a more difficult summer term, although there was still more progress in her learning than previously.

Over the summer Little Miss had begun to sleep until 6 to 6.30am or occasionally even 7am. It was bliss! During this autumns term we noticed that her sleep was becoming disrupted. Luckily this was manifest in early starts to the day, which had been a pattern previously, so wasn’t a total shock to the system .. But it really doesn’t feel like it is good for Little Miss. She has been increasingly tired and often seems to be run down. She has been anaemic, which goes some way to explaining her tiredness, but .. But we worry about the impact this stimulant medication is having on her. This controlled substance, that we have to sign for twice and comes in a sealed bag!

 

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