Best Laid Plans

Two weeks ago we thought we had planned a lovely Sunday activity complete with birds, water and puddle splashing… and it blew up in our face. Despite doing everything right, our fae hated everything. This Sunday, we decided to go to a garden centre. That was it, the whole plan! Go to a garden centre, maybe buy cake whilst there. Done. Full stop.

Well, as we approached the centre, we found that the car park was full to bursting (yay Xmas?) and so drove on. With no sense of what to do now, we ended up driving randomly onto the Yorkshire Moors, ending up at a place called Roseberry Topping. This was somewhere we’d wanted to visit because, for some unknown reason, both my husband and myself find the name entertaining.

Having parked and extracted our fae from the back, she took one look at this mini-mountain and I swear the words ‘challenge accepted’ appeared in a thought bubble above her head. She then proceeded to march inexorably straight up the path. As with most of the moors and natural inclines, there are multiple paths up, varying from incredibly steep to not so steep. Our fae, apparently, only does straight lines. And so off we went, being led on this mad climb by a deranged 4 year old who set a pace that left most adults in her dust (including me) as she bounced up a 1 in 3 incline staircase.

We tried repeatedly to convince her we didn’t need to go all the way to the top, with its sheer drops and slippery steep paths. We failed. We barely even managed to get her to pause occasionally for breath.

This walk was only 1.2km long, but it was all up this wet, steep slope, so I swear it felt like 5 miles. Out of the three of us, she was the only one even remotely appropriately attired – note for future reference, Doc Martens are brilliant for lots of things but NOT hiking, and my husband informs me that sandals aren’t brilliant either.

The view from the top was, it must be admitted, breathtaking. Once we got our breath back. And our fae was delighted with the entire walk up, and good as gold on the way down too. She even took it in stride when, after promising her chocolate cake to keep her strength up, the restaurant we stopped at for the purpose served food that all three of us found unacceptable. Not a murmur. We just came home and she had a hot chocolate instead. Followed by the inevitable bath.

So, what we have learnt from these two incidents is: planning seems pointless; and always carry hiking boots in the car as fae children seem incapable of leaving a challenge half completed.

Why Fight?

I have written a few posts on how to complete various forms, and why, in our humble opinion (my husband is my stalwart support in writing this blog, and my poor editor to make sure that there aren’t too many grammatical errors) it is important to chase information. This blog is why you should fight from the MOMENT you think your child may be a fae. 

Our daughter was recognised as possibly neuro-divergent at her 2 year old health check. We were already pretty sure that this was the case but we had been, to this point, dismissed by health care professionals with statements such as “She can’t be autistic – look at her, she’s as bright as a button!” And “No child that happy is autistic”. We were ignored when we pointed out that she didn’t sleep (well, she must are some point!), hadn’t said a word (well, children develop at different rates), that she was fearless (maybe she just fell off the climbing frame repeatedly) and had a fierce need for routine (all children like routine). So we emphasised that she was behaving normally for herself to the health care nurse when she watched in concern as our little toddler bumbled straight past her and her piles of colourful toys to investigate the door on the cupboard at the back of the room. She would not participate in any of the assessment activities because apparently the hinge was far more interesting. This, we were told was not normal. We still had to push, it was doubly hard as we working through COVID to get assessment done. We were on a waiting list for 6 months for a speech therapist to come and evaluate her. 

Our lowest point was when, finally, after all the fighting and stress and distress, a speech therapist turned up on a doorstep, with bags of equipment to help us finally communicate with our child who was becoming increasingly unmanageable due to frustration… only for us to have to send them away as we had the sodding virus. I won’t lie, we both cried. 

We did portage sessions through a stuttering internet connection, it didn’t work well but was enough for us to demonstrate we needed help. It allowed us to show that she needed support, that WE needed support with her. 

Waiting lists range from 6 months to 2 years. Diagnosis can take up to a year. Without that diagnosis, your child is likely to end up being thrown into the mill of the state education system. If anything will destroy a neuro-divergent child (actually, any child, but neuro-typical kids are more likely to find outlets for their distress) it’s the standard state education system. I say this as a former teacher with 12 years experience. 

A child that struggles with noise, bright light, multiple instructions, and sitting still will have literally been sent to hell in a normal school: being stuffed into a classroom with up to 35 other kids with one – possibly 2 – adults to supervise. Imagine being on the largest rollercoaster in a theme park, going around the bends and drops while everyone is screaming, and being told you are supposed to focus on someone at the front teaching maths or the alphabet. Then being disciplined for not concentrating, or being told you’re stupid because you can’t focus. That is what you are asking your fae to do.

They will then look around and see that everyone else can focus and feel that they must be stupid because they are the odd one out, so they must be stupid. They won’t realise that no one else is on the roller coaster, no one else is getting bombarded by this consistent overwhelming influx of information. No wonder they meltdown when they get home. They will learn to hate school, it’s a place that causes headaches and stress. 

They need sanctuary. If your child needs a special school environment, where classes are limited to 10 and staff ratios are significantly higher (e.g. My daughter’s class has 1 teacher, 4 LSA’s and 10 kids) then they need you to fight for it. Unsurprisingly, fae in these environments don’t detest school: it’s not so overwhelming, it’s a sympathetic learning environment, and as such much more likely to allow your child to achieve. 

So, where am I going with this wandering post? Start fighting as soon as you have an inkling your child will need extra support. Don’t expect the system to just sort things out for you. It’s natural to expect that a country with a welfare system will assign children what they need simply because they need it. Sadly, it doesn’t work like that in this country at the moment. There are wonderful, helpful people working in these places. Treat them like gold dust, because there are also people whose entire life goal seems to be denying you access to anything.

How bad are we talking? We had a paediatrician put in writing that our fae needed one-to-one support, only for it to be refused by a.. person.. at the council who’d never met her, simply because they didn’t want to release the funds. When we fed this back to the doctor in question, she was absolutely spitting nails with fury that she’d been over-ridden. We in the meantime were still just trying to find a childcare option that could take a child who simultaneously had paperwork insisting she needed extra support, and no allocation for it to be provided.

Don’t rely on things Just Happening, or things happening because somebody says they should. Track things, and be prepared to start making yourself a nuisance; if you’re told you will receive a call back from SALT or the health visitor etc in 14 days then on day 15 call them and ask what is going on. Write down the name of everyone you talk to, note what they said. I called ours the ‘shit list’. You need to keep multiple threads working and talking to each other, and you have limited time: the faster you get it going, the better it is for your child.

Unfortunately, the game is rigged: the parents being the most annoying to the services will be seen first. Don’t be angry or abusive, just persistent, it’s your child’s future so you can’t give up. I have written a few posts on how to complete various forms, and why in our humble opinion it is important to chase information. This post is why you should fight from the MOMENT you think your child may be a fae.

We spent over two years battling on multiple fronts, clinging on to the few genuinely helpful people and swearing to ourselves at the rest, and it was hard. But the payoff has been huge: Our fae wakes up and immediately wants to know if it’s a school day because she loves going to school. She’s being supported as she needs to be and her speech has come on in leaps and bounds. She comes home glowing with pride at the badges or certificates she’s earned.

She’s happy, and that’s what really matters.

Sunday was not a good day

For reasons that I still do not quite understand, my daughter had a bad day. I have no idea what the trigger was, but from the moment she got up, everything was wrong. She couldn’t settle to watch her shows; when my parents called to talk to us – a regular weekend occurrence – she did not behave, as she normally does: rather, decided that it was time to kick her legs on the couch until my arm was a mass of bruises and the call had to be ended prematurely. 

Presuming that she had an excess of energy, we decided that we needed an outing. So, we packed up the ridiculous amount of accessories that you seem to acquire when you have a child, crammed them into a bag, selected the mountain of outdoor clothing that we felt might be appropriate (but were unsure of the accuracy of the weather forecast so took apparel to deal with everything from a heatwave to a medium strength blizzard) and stuffed the pile into the boot of the car. After the obligatory debate over the yellow or blue socks, we then secured our fae into her car seat, and finally trundled off. 

We left optimistically, looking forward to a nice day – our fae usually loves outings. But from the moment we arrived, she was on the wrong track. She heard the word ‘shop’ and assumed the gift shop was a supermarket. She was therefore bitterly disappointed that there was very little on sale and no trolley she could ride in. This was compounded when the cafe was not only painfully slow to serve, but had no chocolate cake. This, in our Fae’s mind, made the whole place thoroughly unacceptable. It partially redeemed itself by having a wellie-splashing puddle, but with an empty tummy, and only crisps from the survival bag, she was not appeased for long. Suggestions that we leave to find more substantial fare were rejected. Suggestions that we moved from the welly puddle were met with the same. Suggestions that as she was the only one wearing wellies and hence should go in the puddle alone were met with loud protestations. 

Eventually she was convinced to leave the puddle. In the end, logic and reason having failed, she was extracted from the nature reserve visitor centre physically, as she had thrown herself on the floor and started screaming. To all those who stopped and stared at us judgementally for having a child of her age ‘tantruming’ in a public place I have only this to say to you: Fuck off. Try going on 3 hours of sleep and looking after a tired, disappointed neurodivergent child. This was supposed to be a fun trip for everybody and it turned into a disaster. 

So, screw it, we left, and went to a supermarket, where she got her trolley ride and a piece of chocolate cake. Which she had for lunch, and you can piss off on judging that as well: at least she ate. She was truculent for the rest of the day, and sadly this led to her bed time being delayed, as she wasn’t even settled by her bedtime routine. 

Some days it just isn’t worth getting out of bed.

You’re doing fine.

Don’t forget: you’re doing fine

It’s so easy to over-analyse every little thing you do, and focus on every tiny mistake you feel you make. At the end of a particularly hard day, you collapse on the couch – gin optional (only kidding, it’s not optional) – and go through every interaction, every word and tone you used, to find where you could have prevented the bad moments from happening. 

Stop it. You’re doing fine. The fact that you’ve trawled through the internet looking for help and discovered this paltry blog for your toolbox shows this. Look for the good things, the big moments that you’re getting right. Did your child, for instance, cope with the clock change? 

Honestly, we danced a jig this week, because, this time, our fae did! We took her out, let her run herself ragged looking for a Gruffalo at a park (everyone knows there’s no such thing) and then let her sleep on the way back. We then gave her a meal heavy on her favourite carbs, and she went to sleep only a little late, slept through, and was back onto “clock” time. It was a relief (despite our internal fuming about how stupid the whole clock change thing it). 

So: go team! My husband and myself needed to take a moment to celebrate that. Don’t get bogged down on the day to day drudgery. You are doing fine, you are making progress and your fae is doing fine. So, look back over the past weeks & months and celebrate the wins! They are there, look for them.

Safe spaces and spoon theory

I’m not normally one for metaphors, but this one rang a discordant bell with me.

Have you ever heard of spoon theory? Here’s a short summary for those who haven’t: Every morning when you wake up you have a number of spoons in the drawer that you can use. The number varies from person to person. Some have a lot, others very few, but every morning you wake with some. Every activity and interaction you have uses a spoon, once dirty it can’t be used again until you clean it. The more you have to do, the more interactions you have, and the more intensive those interactions, the more spoons you need to use. If you are lucky enough to have a lot of spoons, then this is not an issue. If, like most fae children (and people with depression or anxiety and a plethora of other conditions) you don’t have a lot of spoons, you find that you run out by mid-morning or lunchtime at the latest.

At this point, you can shut yourself away and rest (wash the damn spoons so you can use them again) or ‘borrow’ spoons from tomorrow’s drawer to get you through – the downside being that you will then have less spoons for the following day. 

For a lot of people, stopping and taking time in the middle of the day to ‘wash the spoons’ is simply not an option, so we blithely borrow from the tempting “tomorrow drawer” until we can stop. 

For children, school is basically 5-6 hours of unrelenting intensive interactions. We hope they are mostly good, but realistically everyone has bad days. By the time they come home, often they have burnt through all their spoons for the day, and maybe even a fair proportion for the following days. They are done with being able to cope with the mountain of unclean spoons they are buried under, and collapse. We see this as a meltdown and outburst of anger because, from our perspective, we asked for something trivial like ‘take your shoes off’. For our child, this is one spoon too many, and they are done. They don’t mean to make us tear our hair out, but from their perspective, people have been demanding one thing after another from them for hours.

Is there a solution? Honestly.. Not really, but you might be able to recognise the signs and mitigate the symptoms. First off, reduce the number of spoons they need and, where possible, put off anything for the first hour after they come home. We are fortunate to be able to provide our daughter a bedroom and a playroom/sensory room. I recognise that this is not normal, and some children don’t even have their own bedroom, but try to find some space where they can go when they first come home and be left in peace. Even if it’s just a pop-up tent.

Research has shown that tablets are helpful in supporting the development of neuro-divergent children. Our fae loves Khan Academy Kids and Duo ABC. So when she comes home, before anything is demanded, she is offered the chance to curl up for a bit with her tablet to ‘play’. 

Even if it’s just a “soft corner” in a room with a stack of pillows and blankets, so long as there is no background noise, or demands made, it will give your child a chance to regroup and ‘wash some spoons’. 

If at all possible, give your child simple choices: do they want to get changed now or in 5 minutes? (If later, set a timer they can see that will let them know when time is up). Don’t take it personally if they don’t want to talk to you: let them come on their terms. 

Recognise that trying to discipline the behaviour, or sanctioning it, is going to get you nowhere: they are not being naughty, they simply can’t cope. Something I think we can all relate to from time to time: I would have written this up earlier, but I didn’t have the spoons.

I can’t help you when you’re being this logical

This fantastic statement was made to me by a therapist the one and only time I went to see one. Several of the agencies I have been referred to have suggested, cajoled and eventually coerced into speaking to a therapist. Apparently they felt it would be good for me, and consequently good for my fae. The famous “you can’t pour from an empty jug” analogy was dragged out (as swiftly downgraded to a metaphor when I pointed out I’m not a jug) as well as other nuggets of wisdom such as “your stress bucket is full, you can’t cope with much more” (again, not a bucket – stop comparing me to inanimate fluid receptacles). 

At any event, that’s how I ended up in the therapist’s office. From the get go, I didn’t get on with the therapist I was assigned: I was told by the receptionist to go up to the office and knock, which I did. He opened the door and informed me that I was 2 minutes early, and in future I should wait on the seats at the other end of the corridor. Right, fine, but I’m not sure how I was supposed to know that. Put out that I was inconceivably early, I was abruptly directed to a seat, read a (compulsory) GDPR statement to sign, informed of the (few) expectations of privacy, and basically told anything I said would be used in evidence. After this inauspicious start, as though a switch was flicked, said therapist changed personalities from administrator to full on ‘I’m here to listen’ stereotype mark 2 (the one with the crossed legs, head tilt and long pauses between blinks). I find this type of thing rather disconcerting, and (whilst counting how many cliches he went through) mostly studied how many interesting patterns could be found in the paint on the wall. There was an array of paint drops that looked strikingly similar to the Great Bear constellation.

Throughout the next hour, I was asked some questions. Not as many as I thought I would be, and each was followed by a protracted silence. For those who don’t know, this is an overused and very irritating technique, designed to ‘allow room for answers’. It’s supposed to give you time to think & reply, and also develop an awkward atmosphere to encourage the other person to speak. The problem is, when you are aware that it’s going on, all it does is irritate. Frankly, I don’t find silence that awkward (it’s only disturbing if I haven’t got eyes on my daughter as it means she’s up to something) and in this context, I can stay silent indefinitely. I had already decided that this therapist was not going to offer anything useful, so I used the time to mentally write a shopping list, design a few blog posts, and debate if he would be offended if I pointed out that his clock ticked second slightly out of time. 

At one point he did say “if you want to use this time to sit quietly, that’s fine.” This amused me, as it obviously wasn’t fine, and he was trying – and failing – not to show his irritation. Which probably wasn’t helped when I then asked him to repeat the question. When he asked about my troubles with my daughter, the answer “It is what it is” apparently wasn’t what he was looking for. His exasperated “But how do you feel about it?” I thought I answered appropriately by listing the fact that the situation can be frustrating, and those frustrations can lead to despair and anger, which is why it was important to tap out on occasions and keep lines of communications with my husband open. He told me to stop analysing. I told him I didn’t know what he expected, he said that was the problem. When I said I thought the problem was how to manage the impacts on me of the behaviours linked to my daughter’s autism, he rolled his eyes and came out with the “I can’t help you when you’re being this logical!”

…

…

Well that was informative. I thanked him for his time as he back-peddled desperately and tried to explain that what he meant was I needed MUCH more therapy and I should come back next week. Right, ok, we’ll agree to disagree on that. 

So apparently I’m too logical for counselling. I’m not too sure where to go with that. Anyone know a good therapist?

Caring for Carers

Today I had another highly depressing conversation with another professional – well, a charity worker (are they professionals? I lose track) – about what help I need to look after my daughter. I find these conversations rather trying, because the first part of the conversation is always the same – and always very depressing. They want to go through all the behaviours and foibles of your child that you find difficult. So you have to recount all the battles you have, every time, and because you never talk to the same person twice – or they are so overworked they can’t remember what you said the last time – it doesn’t matter how many times you talk to an organisation, they always do this. 

Today, it got to me and in a moment of pique, I threw my toys and basically said “don’t call me, I will call you”. I love my daughter, I love her more than life, and sometimes she is all that keeps me going. I find the neverending recounting of her personality quirks (I refuse to call them faults) heartbreaking and distressing. I feel that all these people have completely the wrong idea about her. 

They hear ‘autistic’ and picture a screaming, violent daemon in a child’s body. I mean, don’t get me wrong, she has her moments.. but they don’t seem to grasp that she has a smile that lights up the world and a heart of gold. This little girl, who is still trying to decipher the world she is in, will bring you a blanket if she finds you napping on the couch. She will offer her last sweet or crisp to you. She kisses your ‘owwies’ better and treats them with antiseptic cream (no, she WILL kiss them better and treat them with cream, you don’t get a say in the matter). My darling daughter leaves the house in the morning for school only after telling her daddy she will miss him and giving him one last hug, even though she struggles to form the words. And wants ‘big hugs’ the moment she’s back, too.

Yet I sit and listen to call after call telling me she’s ‘pre-verbal’, ‘non-toileted’ and ‘routine driven’ like this is the sin of a century for a 4 year old. I get it, she’s not in standard parameters, and she is hard work because she has no sense of danger. Believe me, I know, most lemmings have more survival instincts than she does. But she is improving: she now looks before jumping off the staircase. We can now ask her what she wants to watch, and at least she understands the question. 

If all you are going to do in these phone calls is list what you see as her negative attributes, then ask me what support you can give me (seriously, how would I know what I need that you can give, I’m not psychic) and then promise to call back in 2 weeks to do the same thing again, the biggest thing you can do for me is sod right off.

Things you notice raising a neuro-divergent child

It’s been a voyage of discovery raising our daughter. And not just learning about her, either. We have sat in meetings with professionals whilst they assess her behaviour, and been shocked by the statements they have made. Being told that behaviours that you thought were perfectly normal are actually ‘stereotypical’ for a specific condition has raised some eyebrows: both my husband and I have responded “but I did that!”

It seems that the penny has been in the air for quite some time – around 40 years in our case – but it is becoming more and more apparent that there is a strong hereditary aspect to her autism. The only difference is that we are committed to making sure that our fae doesn’t feel like she needs to conform, nor pretend to be something she is not. After so many years of faking it, both my husband and myself are very adept at it, but the mental toll is astronomical. 

I taught for 12 years (I may have mentioned this before once or twice!) I fell into teaching because I ended up doing a degree in the sciences. I don’t regret my degree, but I absolutely regret taking advice from a well-intentioned but misguided parent who insisted that I would be lonely if I took a career in writing, which would have been my preference. So, I ended up teaching. It was exhausting! I was good at it, don’t get me wrong, but the constant social interaction burned through my reserves twice as fast as anything else.

Every night I collapsed and needed a nap before attempting paperwork. I could never understand how my colleagues had the energy to go out to the pub, clubs or even stay up and watch TV. I had no life outside the classroom and paperwork. I never seemed to find a balance. A room (or café – I’m very fond of working in cafés providing I can have noise cancelling ear plugs!) and a keyboard, and I’m very happy. I only have three real friends and they all live at the opposite end of the country to me – I chat online with them as and when I can. Apparently the total lack of want for actual human interaction is unusual, and for a lot of my family they can’t get it. I don’t want to talk to people. 

I have been assigned a counsellor – they keep insisting all my ills will be cured if I would just, please, interact with the community. I tried; I went on a walk with 5 people who are supposedly in the same situation. They felt better, I needed to sleep for the rest of the day. I don’t want to be social, it’s too much. I can cope with my husband and my daughter, and that’s it. My husband is the same – it’s why he works from home. We are always in. All the delivery drivers and postmen now use us as a local delivery depot as we take in all parcels for the street. 

I don’t understand why extroverted people think that introverts need ‘curing’. We don’t, but after years of faking it, you would be surprised how many people think that I’m loud, chatty and generally out-going. It took me until the birth of my daughter to realise that I was none of those things, and if I didn’t have alcohol to help the situation, all I wanted to do was go home and sleep. 

So we’re weird, quiet, and have no interest in interacting with anyone most of the time; and that’s ok. And if my fae grows up to be the exact opposite, that’s ok too. The only thing she has to be is herself, and not pretend to be something she’s not.

I wish someone had told me that as a child.

Bikes and other fit things.

I have been attempting to get fit. I have mentioned before, this is not out of some sense of high virtue, but rather in self-defense against my fae, who seems to see sleep as an option that frequently isn’t selected, and believes any illness or injury can be run off (you just need to run fast enough).  To this end, I have joined a gym and bought a bike. The bike was an abject failure, the chain wouldn’t stay on and, whilst it looked cute, it didn’t manage any of the paths in my local area. So, sighing at my incompetence and despairing for my daughter, my parents bought me a second one, that was actually able to deal with the abuse I threw at it.

This turned out to be a life saver since, having joined the gym 4 months ago, I have managed to set foot in the place precisely 3 times. Once when I joined up, once for an induction with a rather unpleasant instructor who referred to me as ‘hon’ throughout the half hour we spent together (it was supposed to be an hour but instead of showing me anything she just waved in the direction of the weight section and muttered ‘there’s some weight machines over there’). Turned out she referred to me as ‘hon’ because she didn’t bother to remember my name, and wanted a shower more than to show me round.  The last time I went, I tried to work out but found that I couldn’t find anything, on account of not really being inducted properly.

I have been cycling more often, though, and am now a fully paid-up member of the Strava cult. I know what a KOM and QOM are, and I chase PRs to the detriment of my safety. It also means that I can now tow my daughter on her bike to the lakeside cycle path, so she can practise cycling in a safe place without worrying about cars or noise. The downside is, the lake area has a play park, so she thinks I tow her there so she can play on the big slide for a bit. Then tow her home again. One of us has the wrong idea. At the moment it’s a toss up which one but I know who spends the most time on the slide…

A Ranty Update

So, I have been very remiss over the past two weeks at updating this blog. I can only ascribe this to a need for routine. I fear I may have become slightly institutionalised since the birth of my fae, and now that she has started school, I find myself at a loose end and unable to cope with the hours of free time. 

I am also not good at getting anything started, knowing full well that in a matter of a few short hours (well 6) I will need to be back at the collection point. So, by the time I have returned home I have lost half an hour; breakfast and a cuppa and another half hour has disappeared. It takes half an hour to return to the school… well, not really, but my brain operates in half hour intervals of time so I have to make sure I have at least this much to go get her. This isn’t helped by her often being out early (very early; school official finishes at 3:10 but she is often waiting with an LSA for me at 3). So an hour and half is already accounted for so I’m down to 4.5 hours.. which my brain tells me isn’t a day’s worth of time, and therefore it’s not worth starting anything. 

I have recently started to enjoy going out on my bike (something that I never in a million years thought would happen) but this also eats another hour of time plus a half hour shower. So 3 hours left. By the time I have finished browsing the internet, completing a Spanish lesson and generally procrastinating, I have minutes to drag myself out the door to fetch her. 

I don’t know what school dismissal in ‘normal’ schools is like… that’s a lie, actually, I worked long enough to know: it’s like the final scene in an epic jailbreak, complete with screaming and inmates clambering over each other in their attempts to scale the fences before they are brought down by the wardens. The only difference being that in school, the teachers are often desperately leading the charge rather than slowing it down. 

At my daughter’s school, things are more organised, as a fleet of transport buses arrive as one, allowing members of staff to allocate the correct students, their accompanying adults, and equipment to each vehicle. It looks like chaos, but as every child seems to make it the correct destination, one assumes there is logic to it. 

Children who are being met at the school by a guardian stand with a classroom attendant by one of the four numbered doors that lock automatically. I have seen prisons that would envy the security measures here. Her school is designated a special school: at the end of the day, I am assailed simultaneously by relief that she attends a place that will keep her safe, and dismay that it is necessary. I feel a touch of Imposter Syndrome, as other students have needs that physically significantly outweigh hers and I wonder if she is keeping a more worthy or more in need child from a place – I know they are over-subscribed.

Then I remember that she is not toilet trained, she barely speaks and couldn’t follow a rule to draw a straight line. I have to remind myself (or be reminded) that just because others’ needs may be more extreme, it doesn’t diminish what she needs as well. 

The lack of places is not my fault. The fact that she has a place because I know who I need to talk with to make that happen, I have the time and determination to do it, and the ability to navigate the education and health care services successfully to get the support she needs.. is also not my fault. I am writing the blog to try and help those who don’t have those skills, but need them, do the same. It makes me cross that the game is rigged, regardless that I can play it well. Every child should get the support they need. It should not be down to the ability of parent to know the inside track through the maze of paperwork and agencies that you have to fight with to get that support. 

I digress. The reason I haven’t updated is that our routine has been up in the air. Apparently I don’t function well without a stable routine. I may need to look into getting my own neuro-divergent behaviour assessed.