Direct payment part 2

So, a while ago, we got approved for 8 hours a week (school holidays only) direct payment for someone to look after our child. This means that I can get the washing and food prep for the week done without losing my mind. It also gives her a chance to interact with adults that are not myself or her father.

Like most things that are under the remit of local or central government, it is reviewed on a regular basis. Just to make sure that she hasn’t ‘grown out’ of autism, I guess?

At this last review (which was over three months ago) I was asked what we do to manage her endless energy and need for activity and stimulation during the term. I showed her case worker the number of clubs and activities that she is signed into at the gym. She blinked at me and sarcastically asked if that was all. When I said no, and that she also swam, spent time in the soft play area, and generally wasn’t back in the house until 6pm after school every single night, plus we spent at least 4 hours every Saturday and Sunday there so she could blast around the soft play, her jaw metaphorically hit the floor.

She asked how much it cost. I admit it’s expensive, we pay a lot for the privilege of wearing her out. Somewhere in the region of £400 a month for all of us, including her swimming lessons. Then something amazing happened. 

“I will see what we can do. If nothing else, it’s a no-brainer that we should cover part of her membership.” 

To my amazement, this month I received a phone call stating that it had taken time because it was unusual, but the panel had agreed! They will pay £100 a month toward her membership because, frankly, it’s cheaper than “kid’s clubs” every week, and she is doing more than a couple of hours a week there (ya think?!)

So, the moral of the story is, talk through your options because every now and then people will be on your side and help you if the choice is logical. And, as they say, every little helps.

Why is it so hard to get help

Our fae is – undeniably – autistic. My husband and I are not diagnosed, but we’re something spicy. We thought about getting diagnosed as an act of solidarity, and were told the waiting list in our area for adults to be seen is 10 years.

10. Years.

That’s insane. I was thinking about going back to work in that time, but as I need ear defenders (for all those looking for discreet ones I recommend Loop ear plugs) to sit in a cafe, and I can’t be under fluorescent lights without a migraine, the possibility of working in a school lab without a diagnosis to allow ‘reasonable’ accommodations is not going to happen. 

We also, having spoken to her teachers, are trying to get her on the pathway to an ADHD referral. I know there is a lot of crossover, and it may be her masking that is causing the signs, but she has expressed an interest in being either a teacher, a vet or an astronaut in the future. As all these career paths will require further and higher education, she will need to be able to do exams, and that is something where accommodations such as extra time/readers/scribes and – dare I say it – medication may help. She will not get the correct support without the correct diagnosis. 

At present, it’s at least a 2 year wait time for a referral so we thought we’d better start now. I went to my local GP reception and was told ‘Fill in an e-consult’ – so I did. The response on that was: do the self referral on child services and then give me the code. 

What child services??? What code? 

When I asked I was told all the information was in the message and the chat shut down. 

I went to the NHS website, and it said ‘contact your GP’. 

Err…

WTF where do I go from here?! Why is it impossible to start? I can’t even get an appointment to talk to a human, let alone truly start this ridiculous process. 

I am frustrated and remembering why we pay for private medical insurance. It’s a shame it doesn’t cover the assessment. I get the impression the NHS is doing everything in its power to force people to pay for private assessments.

Anyone got a spare £10k?!

Those who should know better

There are a set of individuals I feel should really know better than to expect standard behaviours from fae children. I take that back: there are TWO professions in which I expect this, namely education, where you need to understand at least in broad strokes the needs and differences to impart information; and those in the health care industry. 

Teachers and medics. So it is with great frustration that I continually run up against both who either don’t have a clue, or are operating on outdated or stereotypical data. It drives me insane. This has been driven home recently as I have been trying to get my daughter some medical help. It’s nothing serious, worst case she has a UTI.

The problem is that to diagnose this she needs to have a urine sample taken. Actually, back up: first she needs to talk to a GP. This is something she has no interest in doing. When I articulate to the GP that she is spectrum and that she is not going to do well with strangers they nod dismissively. Then ask her a question. Then they act surprised when she screams and runs out the room. 

No, typical children probably don’t do this, but my daughter is not typical: I just said that. Then they look at me as though I was supposed to stop her. No, I’m not going to traumatise her because you didn’t listen. When I tell them her symptoms they nod, agree UTI and then ask for a urine sample…the child ran out the room when you spoke to her but now you want me to get her to pee in a pot?!

Well, having talked to other SEND parents (top tip – other parents are the best source of info because the professionals have no idea) there are two options – sterile container and decant, or pads. The pads may seem like the best option but have the lifespan of two hours. 

So, all in all, it’s not easy. And that’s without the added complication of coercing cooperation out of your child. 

I dread the day they tell me they need to do an examination – that may require sedation.

Managing residential

This week, my daughter went on her first “sort of” residential trip with the school. How was it “sort of” residential, I hear you ask (all 2 people who are maybe reading this outside my immediate family) Well, it goes like this. 

A couple of months ago a very bubbly, slightly demented child came home from school brandishing a letter. The letter explained that they want to take the class to an adventure centre for three days in July. At the centre, there would be rock climbing, archery, canoeing and a whole host of activities that seemed to be the things our fae child thrived on.

The only problem being it was two nights away from home and our 7 year old has never stayed away from us overnight – ever. Not even with relatives. Not only that, but as written in a previous post, her bedtime routine is over two hours long, starts at 6pm and if not followed will result in said child not sleeping for a month. She also ‘follows her own agenda’ which in this case means she would see no problem, on waking at 3am, in getting herself up and taking herself off to the nearest climbing platform or canoeing lake and having a go alone. After all, safety lines are optional extras in her world, and having done it once she would deem herself an expert. 

All in all, the idea of her sleeping there was not something we wanted to contemplate. Which was sad, because she would love doing everything. Then we thought about it: how far away was the centre? As it turned out it was only about 20 mins away from us, no further than her school. So, with some negotiation, we agreed with the staff that we would drop her off every morning and collect her every evening. Not ideal, but the best solution we could come up with. The teachers gave me looks like I was an overprotective helicopter mother. Every parent I talked to seemed to agree that 7 is very young to stay out on a school residential trip even for a neurotypical child, let alone one who is frequently scared by Paw Patrol and only learnt to talk two years ago.

So, since Wednesday, we have been making the journeys to drop off and collect from the centre. On the plus side, the journey is significantly nicer than the school run – through the Yorkshire Moors and with little traffic. On the downside, bringing an over tired, cranky child home is a trial. 

She enjoyed her time, however, which I guess is the main thing. And we got some extra time, so a few chores that had been looming like the sword of Demoncles have been dealt with. 

Best of all, it’s over now. 

Trying new things

This coming week my daughter is trying several new things. I am aware that new experiences are essential to growth and development and no child can live in a bubble without them. That said these are milestones that I am not happy about her facing right now. 

Her school wants to take her on a residential trip. She is 7, this to me is young even for a neuro-typical child, especially one that has never slept out of the family home without a parent and for one that is divergent and is statemented as delayed way too soon. When I voiced my concerns to her teachers they looked at me as though I was insane and in the end I had to break it down to the point where I had to explain the whole of her night time routine to them (see previous post). 

Add to that she would be expected to eat strange foods, shower herself and have limited supervision at night when I know she will get anxious and go wondering and a compromise needed to be found. So I have agreed that she will attend during the days and we will collect her each night after my husband finishes work so she can still have her evening routine with us. We are fortunate that the outdoor pursuit site she is visiting is around a 20 minute drive. 

To try and get her ready for sleeping out, away from us we are starting with stage one. We are going to a hotel this weekend for one night. Another source of anxiety for me, it wasn’t planned that these two event would happen in the same week it was how the cards fell. I am concerned that this is not something that will go well. We have one room for the three of us, I am not convinced the hotel will give her an actual bed. Hell I don’t sleep in a bed when I had to share with my husband in the past so this is already looking like it will be stressful. I don’t like feeling like we are setting her up for failure but she needs new experiences and who knows she may love it.

So now I’m not sleeping because I’m anxious about the weekend going badly and I’m anxious about the school trip. I’m not convinced this week is going to be easy and the last time we were away from home it took a month for her to regulate when we returned so I’m not looking forward to that either. 

Oh and Summer holiday is looming like the demon of Christmas future. 

Can it be September again? 

Ignorance is bliss

Ignorance is bliss. It’s also a good tactic when dealing with truculent, self-opinionated and tantruming children. Following on from my last post on self-awareness, our fae has upped the ante on her behaviour and has decided that she is a ‘hunter’ and that hunters ‘do what they want’

This is an interesting concept from someone who needs help with everything from getting to school to wiping their ass, but we will gloss over that. She is adamant that she will loudly proclaim that she doesn’t need to listen to either of her parents and that we are in fact losers. 

You know the adage ‘never argue with an idiot because they will drag you down to their level and then beat you with experience?’ That can also be applied to small children. There is no winning, applying logic will not help you beauce they are not logical beings. Appealing to their better nature won’t work simply because they don’t have one, they are in fact little arseholes designed to test how far you can be pushed before you commit murder. 

So that left us with one last option: we ignore her tantrums. We sat down at the table having informed her that her food was ready and desperately wracked our brains for anything and everything we could talk about that didn’t revolve around her. This was not an easy task, my husband works from home and we had discussed his recent achievements at lunch. Nor did we have anything to talk about from my end, because I spend my days looking after the child and preventing her from killing herself, and yes this is a full-time occupation. 

After a minute she joined us, after two she started eating, after three she tried to join in the conversation and actually told us about her day (miracle of miracles). A much calmer evening than we have had in a long time. So ignorance may be bliss but ignoring is pretty tranquil as well. 

Self-awareness

Recently, we have once again been struggling with our daughter’s behaviour. This is a perennial problem that I wish only came around once a year, but is more like once every few weeks. Just when we think we are through the latest batch of rewiring / growth spurts / illness or whatever is causing the screaming demon to possess her (and I truly do sympathize with parents who subjected their fae child to exorcisms) the next one seems to appear.

Recently, our 7 year old has been taking offence to every little thing that we have said to her. Any question or conversation has been met with grunts, huffs and arguments. If I didn’t know better, I would think that she was actually entering the dreaded teenage years. 

I’m not even asking her to do things against her interest, I have long since given up asking her to clean up after herself – something she will happily do at her grandparents house. In fact she will happily wash up and dry dishes that everyone has used at her grandparents house without being asked (bitter? Me? Never!). She will also make sure to say please and thank you and is generally the model of perfect behaviour. Yes, the vein in my forehead is pulsing and my eye is twitching. The moment I ask her something, however, I will get screamed at. The question that most often generates this response is ‘what would you like for dinner?” 

She will scream huff and sulk when asked. So, yesterday, having not had a polite conversation for an entire weekend, I was done. So, having dragged her home, I made her dinner. Nothing unpleasant or unfavourable. In fact food she has eaten every day for years and is fond of. The key difference being, I didn’t ask her what she wanted, simply told her that her options for dinner were ‘take it or leave it’. 

Unsurprisingly, she went into full tantrum threatening to throw it in the bin, claiming she wouldn’t eat it, and screaming at us. When told that she could indeed do that, but she would be going to bed hungry in that case, she stopped after about 20 mins and grudgingly ate the food whilst complaining she didn’t get what she wanted. 

When told that she would be able to choose what she had for dinner as soon as she stopped shouting and started behaving, I admit that my hope was for her to start behaving. It was not for her to fall to the floor and wail “I’m never going to choose again!!!!” whilst in floods of tears. Although I did give her kudos for self-awareness.

Making progress

Recently, I have had occasion to sit back and marvel at how far my daughter has come in the past year or so. A year ago, if you told me that she would be regularly eating school dinners, I would have raised an eyebrow. If you told me that she would – on a semi regular basis – be eating dinner at home that actually had some vegetables in it, such as a mashed potato and sweetcorn, I would have laughed hysterically. Had you then gone on to tell me that she would also be eating some sort of protein such as chicken nuggets, fish fingers, or sausages… I would have asked if there was a history of insanity in your family. 

The truth is, she is now – with reasonable reliability – eating at least one good meal a day. Is it enough? Probably not. Would I like her to eat better? Show me a mother who wouldn’t. But compared to where she was 12 months ago, I’m dancing a jig. 

She has also made other sorts of progress – she can take herself off to the toilet without being supervised all the time at home. She can – with sufficient threats – be trusted to take herself off to the toilets in ‘safe’ locations, such as her grandparents house or the gym, without getting “lost” on the return journey. 

Most importantly, she is starting to report when she has been injured. This child didn’t tell anyone when she had fractured her arm, and frequently came home from school or clubs with egg-sized bruises that she couldn’t account for. But, for the first time, this week she told me that she had hurt her ankle at school. I took that as a win, I asked if she told anyone at the school when she had done it and she said she had! Even better! 

She had told her 7 year old non-verbal best friend that she had hurt herself copying him, and then they had both continued to play.

I said progress – not perfection.

Drowning in paperwork

So, I may have mentioned that we are challenging the DLA ruling. This is not something I would recommend doing on your own: The forms are complicated and long. I am fortunate that the school which my daughter attends offers the ability to book a ‘drop in’ session with the lovely folks from citizens’ advice.

I do find it strange that you have to book a drop in session, but that may just be me. Anyhow, I did this, and the lady I spoke to was lovely, exceptionally helpful, and has obviously done this type of thing multiple times before. She had several sheets of information on the criteria needed to qualify for the high level mobility, and it turned out that my daughter did in fact meet all of them. She also knew the ways to phrase the information so that it was coherent and to the point. 

The problem is that, as with any form to do with benefits and disabilities, you always have to focus on your loved one in the worst light. It can be a bit soul destroying. It was compounded by receiving the draft to go through on the day that her EHCP was up for review. So I have spent the day looking at paperwork, which is no one’s favourite activity, and all of it was about the worst aspects of my daughter’s behaviour and development.

Nothing like that to make you feel cheery with the world. We then arrive at her sports club to find that there are chuggers (“charity muggers” for those not familiar with the term) parked in the cafe, trying to sign people up for donations using false information about how close they are to a cure for breast cancer. The only problem being that their own website doesn’t mention the research they are advertising, and they seem to think there is only one type of breast cancer. 

They also are trying to sell T-cell genetic therapy as a silver bullet that in five years time will be available to cure all cancer. I hate people using hope to sell a product they don’t get. 

It’s very frustrating. I may have snapped at them. They are now looking at me sheepishly. 

Ah well, we’re not here for that long. Only another 3 hours… 

Are we nearly there yet?

Recently, it seems, the Fae took my (reasonably) amenable child  – the one that will, on occasions, do as she’s told, and that doesn’t have a complete tantrum over anything – and replaced her, once again, with a screaming whirling demon. 

You’d think we’d be used to it by now, but this one was turned up to 11. For the past several weeks she has screamed, flailed and broken down over anything and everything. I have had to carry her out of her gym classes, I have been called IN to her class for the first time ever by staff because she had a full sit down protest over being asked to go to the toilet with the group. On one memorable occasion she lay on the floor of the car park (fortunately on the footpath) with hands and feet pounding the ground because I refused to let her ride in the front – because her booster seat is in the back, and the law states she still needs it. When she finished beating up the floor, she got up and hit me. She was then surprised that this was not met with enthusiasm, and she was told quite sternly that, if she did that again, I didn’t care how upset she was, there would be a consequence. 

She also took herself off on walkies in the gym building, I couldn’t find her when I went down to the toilets looking for her, and she wasn’t where she said she would be. Apparently we are also horrible parents for making her leave immediately as a consequence, rather than letting her keep playing with her friends. It has also been our fault every time she lost or broke a toy. 

This is all compounded by her broken sleep, and if she gets up before 6 am again, I may go mad. 

We haven’t changed our responses, simply because when she pushes on a boundary, we have found the best thing we can do is hold firm on where it is. Despite the sheer exhaustion this causes – for everyone involved – all we can do is keep holding her to the standard we expect, and hope our daughter reemerges from whatever deep sleep she is in that is allowing this possession. 

I take heart that this is, normally, caused by her undergoing some sort of physical or psychological change. When she comes out the other side, she has normally grown, if not taller, than her language or motor skills are better. 

That is small comfort whilst it is happening, and I truly thought that this weekend marked the end of it, as we finally had a relatively nice time, and she even spent time in a friend’s house playing. 

And then this morning she managed to have a meltdown because she couldn’t style a unicorn’s mane like she wanted, and then dive-bombed her father, causing his (fortunately rather solid!) head to ricochet off a solid wood bannister. 

So, maybe a few more miles before we sleep?