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? 

Today’s mystery object

I think, once again, my daughter has invented her own version of a game. Twice a week, her grandparents pick her up from school, so twice a week she requests (read demands) that I drop off a toy at their house, for use in the evening’s activities. 

Think of it as a side quest: you pick up an object that you have no use for now, but you will most definitely need in the future. 

So, over the past few weeks, I have stopped by and handed bemused grandparents: a medium sized stuffed Dalmatian that goes buy the name of Tiny Marshall; a small black stuffed dog (called Hairy Maclary – from the books); a squeaking guinea pig (that she swears is a hamster); several unicorns; and, today, a 2ft giraffe. 

The giraffe came with an explanation; this is the mummy giraffe, because the daddy giraffe has to look after Apple Juice (that’s the baby giraffe’s name. Obviously) and Apple Juice can’t come because s/he (I’m still not sure of the gender of this one) isn’t washable. Mummy giraffe is hand washable and which means someone (guess who!) will be able to clean it when she invariably gets chocolate and/or banana on it. 

When I point out that chocolate is one thing, but I had to use a pet comb on Hairy McClary to clear out the spider eggs she got on it after dumping it in her bike’s basket, she got rather cross. 

I left the giraffe with her grandmother looking at it, anxiously wondering what on Earth they may need it for that evening. 

I never did find out, but everyone looked cheerful when she came home, happy and full of chocolate, so I assume it served its purpose.

I can’t wait to find out what she thinks she’ll need for the next visit. 

I don’t care what it says

My daughter is officially diagnosed with autism. She was diagnosed in a time before levels, but having read them, I’d say she bounces somewhere between level 2 and 3. I don’t know if this is actually possible, but I feel it should be, as it is a condition that changes with age and therefore the criteria that she met for level 3 – e.g. being completely non-verbal – no longer completely fit, so she is more of a level 2 now? I don’t know. Is it like a car MOT, and what you get on the day is what you have until reassessment? As no one reassesses, this seems stupid. 

I’m rambling. I do that a lot. She woke me up at 1am because monsters. I don’t know if they were scary monsters, or if they just wanted to chat, because all she said was ‘monsters’. With her, I think it may have been the latter, but it may have been the former.

Moving on.

Yesterday, her “short breaks” social worker called, to reassess her needs. Unlike her diagnosis, – probably because there is money involved and the local and central government is perpetually skint – they like to see if you still need the respite care. 

I pointed out that, yes, she still had a high level DLA. And she now has a low level mobility DLA (which we need to appeal as it seems she should be on the high level for that as well – another post I think) and, yes, she still has a tendency to throw herself off high objects, and has a speech therapist, an Occ. health assessment, attends a special school, and is all-in-all my spicy little sunbeam. 

The social worker asked if anything had been going well since last year, and I mentioned that we had joined our local David Lloyd gym, and that the Kids Team there have been essential for our sanity. Seriously: she goes 5 days a week during term time, and can be up there for 7 hours a day in the holidays. She loves the place, and luckily they love her too, and they have enough members of staff, enough space, and enough activities to manage her. When all else fails, they put her on a tennis court and let her run laps.

Having explained all this to the social worker, she told me how good this sounded and she would see if there was any chance that they could pay for some of her membership. I have to say, I’m overjoyed for this to be even considered, as she loves it but it’s one of our biggest expenses.

But it does bring home another point: I don’t care what her diagnosis says, the social workers are willing to pay her gym membership. I’m taking that as evidence that she has ADHD as well as the autism.

Now excuse me while I go throw her in the pool so she can hit the water for an hour to regulate some sensory seeking behaviours. 

They just won’t get it.

We had some family come to visit. This one statement always makes the bottom fall out of my stomach. Don’t get me wrong: we have relatives who live close by who I don’t think we could cope without – they have gone out of their way to make our lives easier, and I am so thankful to have them near – because they DO understand how hard it is to raise our child. 

Family who live further away only see what I would call the highlights reel. It’s a bit like social media, where you only post the good or the interesting bits, so the rest of life passes by in a wave of drudgery that goes unnoticed and undocumented. The problem is that for us, just about ALL of our life is that wave: we can’t break free. It may be amusing to those looking in that my husband can’t wear anything but white t-shirts or our daughter has meltdowns over ‘not-daddy’ interacting with her; or that she has to have her hair braided in a specific way; that when she has a bath she has to wash body parts in a set pattern. But if we deviate from the pattern it leads to hours of a child in crisis. 

For reasons I find unfathomable, this is beyond the grasp of my family. They tell me they are coming to visit to be on holiday, and are going into the moors near me to go biking. Fine, I manage to clear a day in her routine to meet with them. I tell her it’s only one day, we can make one day work, right? It should be fine, how hard can one day be?!

Actually she wakes at 3 that morning and is bouncing around the house waiting for their arrival for hours. She doesn’t eat breakfast because she is so excited. Sure enough, they don’t make it out of the car before she has grabbed hold of her cousin and dragged him off to play. She doesn’t get to see her cousins more than twice a year, so I appreciate that she wants to spend time with him. 

The day goes fantastically well, for the most part. Except that she is so excited she forgets she had bodily requirements – like food, drink, and the toilet. But this is to be expected and because her cousin eats lunch she actually ate lunch, so small mercies. All good until my brother mentions the fatal words ‘see you tomorrow.’ My heart sinks: I know they want to go mountain biking, and unlike most people who will be out an hour or two tops, this can be an all day event for him and my nephew. I knew they had planned this, so I had planned for my daughter to be in clubs that morning whilst I had my physio appointment. These are standard routine things. If she had only seen them one day, and they’d left with no expectations of more time, it would have been great. But the moment you mention that you will see her again, that becomes something that she will fixate on. 

And then when you don’t follow through, I have a child in crisis for 5 hours from the time you were supposed to meet us until she drops from exhaustion. 

This is, apparently, my fault for not wanting to change her routine further? Well, that ain’t happening. You want me to move her dinner time – that means changing bedtime routine, so not a chance in hell. 

You want to play the ‘we came all this way to see you’ card. Well let me tell you, no one asked you to, and more importantly you were not invited. 

You want to play the ‘I’m on holiday’ card. Good for you, like the parents of most SEN children I haven’t had a holiday since she was born, and we don’t take her away because it takes over a month to resettle her when we get back. 

To turn around and state ‘well you could have met us half way’ – so drive half an hour to talk for ten minutes with a starved, sleep deprived, deregulated child to then drive back again whilst hoping she won’t crash in the car, because if she does she won’t sleep at all that night, spiralling the problem for days… Are you for real?

And my favourite ‘well why couldn’t you spend two days with us?’ Because she doesn’t fucking sleep when you say you’re about, and then you changed the fucking goal posts and didn’t meet us anyways. 

So, having tried to articulate all this and been met with huffs, sighs and being ignored, I have concluded that they are never going to understand. And it’s a hard, bitter pill to swallow but sometimes for the sake of your peace and sanity you can not have some of your family in your life. Because they will not understand that these rules that seem arbitrary are there for the protection of your fae child. Sometimes you don’t have the energy to explain them. 

Sometimes you shouldn’t need to explain them. 

To then suggest they can make it better by coming back to see you in the near future just demonstrates how badly they don’t get what you are facing. So I have been crying for two days, I feel like I am mourning the loss of the last of my blood family. But if they won’t or can’t understand then so be it. I have to do what is best for my child. After all, she can’t defend herself from their thoughtlessness. 

The no-win situation

My daughter needs a reset switch. I say this while loving her to bits, but sometimes she does just need some way of being able to reset her brain. Especially when she is tired, or ill, or out of spoons. So about 90% of the time. 

She will put us in situations where there is simply no winning answer, and she will end up in tears no matter what we do or say. The most recent one was after a meal; I say meal – I ate food, my husband had Huel (if you don’t know what this is consider yourself blessed) and she ate half a crumpet, but not the edge bit. She then wanted pancakes. Fine, whatever, it’s food right? 

So we say yes, she can have pancakes and you would think this is the right answer. Wrong. You see the caveat is that she will only eat pancakes if daddy has pancakes. Daddy didn’t want pancakes. So now she is crying because she is the only one wanting pancakes, you see daddy was going to have the cookie that she made him that afternoon. 

So Daddy told her it was fine he would have pancakes with her. All good?

Nope you see now Mummy isn’t having pancakes and is odd one out. Mummy (having actually eaten food) was not going to have anything but seeing this was causing an issue agreed quickly and said fine we will ALL have the damn pancakes. So we can be calm now right? No need for meltdowns, no need for uncontrolled emotions on behalf of others not having pancakes we can relax and have the sodding pancakes? 

No. She’s now melting down again… at this point I have no idea what the problem is. My husband has no idea what the problem is and when ask she has no idea what the problem is but it’s something to do with the number of pancakes that may or may not be consumed by the number of people awaiting dessert. It turns out that someone needed to the eat the sodding things and that number was undefined but somewhere between 1 and 3 but no one had the right answer for what it was. 

It turns out I didn’t want pancakes. I wanted rum and lots of it.