Happy Birthday Tiny Marshall

Our fae has a companion. Not a real one, but a stuffed toy which I may have alluded to a time or two in the past. This is a small, plush Dalmatian that goes by the moniker “Tiny Marshall”. This is a Paw Patrol reference (she has been obsessed for the best part of 4 years and it shows no sign of waning). Tiny Marshall is very important to her and, as a consequence, to us as her parents. He is mentioned in her EHCP (it was a point of amusement with her teachers that it was mentioned that we have 5 identical Tiny Marshall’s: 3 in active rotation with similar level of wear and two kept in reserve for when/if the others wear out – he really is that important). 

So, when she woke up one morning and insisted that he had to have breakfast, we shrugged, dumped some stale cereal in a plastic dish, and put it on the table next to her porridge. I guess he’s a slow eater, as he’s had the same cereal for the past few months.

Recently, she announced it was Tiny Marshall’s birthday. This became a point of contention until she was exceptionally well behaved at school and I, for reasons best forgotten, needed to stall going home.

So, we went and got Tiny Marshall a birthday cake. I drew the line at party hats, and had a full on fight over refusing to buy him a present (seriously I’m not buying a toy, a toy; the recursive insanity was too much for me). When we got home, the dreaded and obligatory song was sung, candle lit and dutifully blown out, and cake was eaten. The cake being, I’m sure, the sole purpose for this charade – she really likes cake. 

Two days later, she held up another plush toy and announced it was Baby Shark’s birthday….

Tiny Marshall has a hard life and deserves a birthday

Direct Payment

Surviving half term was a touch-and-go event. At some points, I wasn’t sure that either myself nor my daughter was going to make it. It was a relief to drop her off at school on Monday morning, and send her off with a wave as she happily disappeared through the door. 

I slept. For two days, she was at school and I slept. On the third day, I still wanted to stay in bed, but just about managed to drag myself out for a walk with my husband. It was with some relief that I got a call from the Disabilities social worker telling us that, even though it was not as much as she promised, nor what she promised, we have got 8 hours a week of direct payment during the holidays.

Direct payment… what the f**k is direct payment?!

If the above statement is going around in your head in some form or other, rest assured, you are not alone. I had no idea either. It turns out, what it does is to allow you to employ someone to act as a personal assistant of sorts for your child – to take them out/babysit for a number of hours a week. 

In the cases of disabled teens, including fae, this allows them to go out with friends without supervision. Well, not without supervision, but without their parents helicoptering around them. Instead they can have a teacher, LSA, or other professional they know. Which is much better, I’m sure, and doesn’t put any crimp in their social life. 

In the case of our 5 year old, it means she will get to spend time with one of her favourite adults from school during the breaks, and hopefully I won’t go insane. 

To get this underway, you have two choices in our council: option A, you can undertake the sole responsibility for being an employer: sort the HMRC; PAYE; DBS; and the rest of the paperwork required for an adult to work with a young person – all by yourself – and submit it to the disabilities team for approval. Or, option B: you can have them put you in touch with a non-profit charity which gets you and the prospective adult in question to fill in a few forms, and then they do all the liaising for you. The advantage of option B is that all you need to submit on a rolling basis are timesheets to show when your child was with their ‘personal assistant’ – as they are called (seriously, she’s 5 and she has a personal assistant. I’m 8 times her age, have far more to do, and significantly less sense of order. I want a personal assistant!)  

The advantages of option A is ….. umm anyone? Yeah, I got nothing. If anyone does please comment below. 

So, I have a small tree’s worth of forms to fill in, but I’m hoping to get that done in the next two weeks, and have this actioned in time for the summer break (ambitious, I know, but I can live in hope). If not I will be googling ‘How to keep your child occupied during summer’ every day for the coming 6 weeks. 

If only I had a personal assistant to do the paperwork…

Just being

So, my daughter is coming to the end of her first year of school. In that time, I have been trying to recover from 4 years (two of which include the COVID lockdown) of being basically the only one looking after her full time. My husband and I had no family nearby, and he had to work, so support was not necessarily available. This year, I have had some time to myself for the first time in a long time. Before I had my daughter, I was recovering from a nervous breakdown from looking after other people’s children, so I have spent this year just trying to keep on top of household chores (that’s a lie we have a cleaner, my daughter only eats porridge and my husband won’t eat anything I cook because I use vegetables), laundry and just being. 

And therapy, lots of therapy but that’s another story. I am beginning to feel like I might be able to be a productive member of society again. So this is the question: What does a former teacher (with NO intention of going back), with a 5 year career break, no social skills (or brain-to-mouth filter) *do* to get back into gainful employment?!

I have some marketable skills, but mostly I write and look after a fae creature with a death wish. So far, she’s still alive, so go me! I’m thinking of retraining, but who knows. I only have maybe an hour a day to do anything, so wish me luck. 

For the moment, though, I will continue to exist and hope to survive the summer holidays.

Not the daddy

So, the forms and signs of how our daughter’s fae tendencies express themselves continue to evolve. This one did take us by surprise, although in hindsight it probably shouldn’t have.

My husband, on a day-to-day basis, only wears white T-shirts. I know that you are not asking for fashion tips, nor would you take them should you ever see either of us in the street – but it is relevant. It is not really by choice, but rather, a necessity that this particular item of apparel exists in abundance in his wardrobe. He is rather tall and broad, and as such struggles to find clothes that fit. These t-shirts fit, but come from Costco, and hence they came in bulk.

So now my daughter is very used to seeing her daddy wearing white T-shirts. To the point that, on Sunday when he came to join us wearing a blue dressing gown, she had a full-on meltdown and refused to accept that he was her daddy. She was so adamant that her daddy wears white t-shirts that she would not look at or talk to him and fought fiercely when he tried to give her a cuddle.

She would not stop until he went and changed. He came back wearing the right t-shirt and a bemused expression, and was welcomed with a big smile and relieved hug from a fae child who had believed that her father had been (briefly) replaced by a blue-dressing-gown-wearing imposter. 

I feel this is an interesting probably as mummy is still mummy regardless of what she wears and whether her hair is brown, blue, or looking like a Smurf vomited skittles on her. 

Who understands the inner workings of the fae mind.

Summer Holiday Blues

Trying to organise the summer holidays has turned, in my case, into something of a military operation. I have, I admit, begun to panic about all the time I have to fill with a small child who will be expecting to be entertained in the manner to which she has become accustomed since the start of school: Her school has swimming pools, trampoline rooms, soft plays, sensory rooms and sandpits in the classroom. It also has a cycle track in the playground. So this is no small feat. She will also expect to be able to socialise with her friends.

I have approached this as if I was planning a scheme of work for teaching: When in doubt, fall back on what you know. My daughter requires outings in the mornings or she is a nightmare for the entire day. So for 44 days I have to make sure that I (or someone) entertains her. And she needs to have contact with her friends as well. How hard can it be??

Well there are a few objects in the way. Firstly, some of this requires me contacting other adults. Other adults, it seems, don’t necessarily look upon the phone as some sort of hateful invention. I despise making phone calls. I will tolerate (just) the occasional text or social media message. Honestly? I am most happy with my headphones in, listening to an audiobook while following my fae as she bounces around and explores. 

I am building my courage to make the contacts that need to happen and I am hopeful with some planning that we can make it through 6 weeks without too many meltdowns or worries. Everyone else does. In the words of an infamous car journalist “How hard can it be?”

Where to get help.

This is not much a post but rather a glossary of places to go for help. After all everyone needs support sometimes. I have tried to keep them to national level but you will find that your local council will be able to help you and point you in the direction of other agencies.

Support

Daisy Chain project

Home

Carers together

https://carerstogether.co.uk

Local Offer

If you google it, and your county council it will give you a link to the SEND services in your area offered by your council.

My blog 🙂 (pass it on to others)

Home

Discounts

Max Card

Home

Councils tax reduction

https://www.gov.uk/council-tax/discounts-for-disabled-people

Things to google

Blue badge

Carers allowance.

Things to think about

EHCP

DLA

School entry and type

Find it a keep going

I’m exhausted, so is my husband. At the moment my daughter is going through a phase of getting up before 6am. She then won’t settle to do anything and will insist that I follow her from room to room around the house until my husband will get up and make her breakfast at around 8am. Keeping awake whilst driving her to school is an exercise in stubbornness. I have to stop before going driving back. Caffeine has becoming an necessity that I can no longer function without.

The problem is that none of this is my daughter’s problem and so when she comes home from school she will expect to be entertained in her way regardless of how shit I feel. I want to cry, I want to rage it’s not fair. I want a holiday. Only a holiday isn’t a holiday it’s a nightmare of being off routine with none of our resources or tools to fall back on. So we haven’t be on holiday in years. I resent it, but I’m trying not to resent my daughter – some days are easier than others. I have to remind myself that every time she tells my husband or I to ‘shoo’ or that home is ‘yucky’ that she doesn’t mean it. That she does love us and 90% of the time she is a loving and adorable little girl. It doesn’t make the other 10% of time any easier though, when you’re already down and hating everything and your internal monologue is muttering that you didn’t sign up for this and every social media post from friends and family of happy family times of children playing, talking and exciting holidays that you will never have feels like a knife in your heart. Those are the times when you need to dig deep and remember that she didn’t sign up for any it. She didn’t ask to be born at all and it was our choice to have a child and that means what I feel is irrelevant. What you are feeling is irrelevant. Harsh I know but true.

When your child is with you, what you need has to come second sorry not sorry. So dig deep, find that last spoon, that last gram of patience and paste a smile over the grimace and through gritted teeth ask “what do you need darling?”

And when you can’t really can’t do that, remember that there is rum in the fridge and they go to bed before you do.

From a different perspective

One of the most exhausting things, mentally at least, that I have found whilst caring for my daughter is trying to think like her. This is often a scary prospect as it appears a lot of attention is taken up with Paw Patrol and debating the gender of various inanimate objects with said objects. It is, however, sometimes the only way to find out why she has gone from a happy bubbly child to a screaming demon. Lessons in perspective are important, and also analysis of consequences – not for the child, but for us as parents. It may only be a stuffed dog to me, but to her it’s a lifeline, security, and to be without it will cause huge anxiety. So no, she isn’t going to sleep, leave the house, eat dinner or do anything else until she has it in her hands. 

This is why we have 5 of the sodding things. 3 in active rotation, and, since we discovered that they were to be discontinued, 2 in storage. This means that there is always one available, regardless of whether it needs a wash, it’s been left at school, or she’s put it in a ‘safe place’ and promptly forgotten where that is (why is it always under the couch!?)

I have also noticed that articulating and validating her emotions, independently of what I’m feeling, helps her process what is going on. I might be internally screaming that, actually, she’s having a meltdown over the playdoh being the wrong shade of red after she added the white to it. But using logic to point that out is not going to help anything in that moment. 

I have been chastised for using the wrong spoon in the wrong porridge bowl. Yes, she has more than one bowl for porridge, deal with it – I have to. The blue spoon is for the white bowl, the silver spoon for the blue bowl, and no, it can’t be any other spoon; and yes, they have to be that way round. You have to stir clockwise and the blue has to be on the left of the white. Got it?

Good, because I haven’t, and regularly get it wrong. (Don’t even ask about transferring porridge from one bowl to the other!) I could argue it makes no difference, and seriously, the orange spoon and blue spoon are the same size and shape.. but at some point you have to identify the important point of the little drama: I want her to eat. How that is achieved, I honestly don’t care. So we do this song and dance at least three times a day because porridge is all she currently wants to eat. But hey, at least she eats!

I’m exhausted from it. I need a drink. That’s a shot and a half of chilled Kraken rum, in a tall glass that has a squeeze of fresh lime juice, one ice cube and topped with 150ml of full sugar, coca-cola (not Pepsi or store brand). 

I don’t have any idea where she gets her pickiness from.

Thinking outside the box

So, this month there are three long weekends and a half-term to contend with. Don’t get me wrong: I love my daughter. I just love her more when she can burn off some of her endless energy at school. We’re actually seriously considering getting a puppy just so they can wear each other out. Then I think about how much energy it took to train a puppy last time, and decide that we just don’t have enough spoons for that. So, we need to find other ways of surviving. And it is survival at the moment: there is no room for anything else. I laugh when people ask where we plan to go on holiday, we can’t remember the last time we took one. 

So, we end up in this fugue state, which is some level of exhaustion between genius and insanity. It has lead us to discover many creative solutions to unusual problems that we have encountered. Having a fae child means that you will have to solve issues that parents of more neurotypical children will either never have, or have to a far lesser extent. For example: sensory issues surrounding food. I have written multiple posts on food refusal so I will leave that subject alone and move on to others.

Such as brushing teeth. Most children don’t like brushing their teeth, but for some children it can be a twice daily battle royale: it is no way to start and end the day. We found that giving our daughter her father’s shaving mirror made things vastly easier: she could now see for herself that I wasn’t just being annoying, and there was actually still stuff on her teeth. Since she has a love of things being “clean & shiny”, the mere sight of a speck of food on her teeth was enough to make her clean them. Also, giving her the choice of whether she or I did the actual brushing: She used to want me to, now she invariably wants to do it herself. I don’t care as long as it gets done. 

To encourage her to drink more water, we took her to the shops and let her choose a sports bottle (unsurprisingly she chose one with bees on). We store it in the fridge next to mine, she definitely drinks more water now. 

We also bought toy hammocks and nets and let her choose where we installed them, and now she happily puts her toys away. 

We’re now plotting to introduce her to cooking shows so she will find inspiration for foods to try. Seriously, don’t underestimate the power of television – it’s where we found the rainbow ice lollies, and if you call spaghetti ‘wiggly worm pasta’ she’ll eat that too!

The Strange unwritten rules of society

It has been amusing us that, since our daughter started to speak, we have been given small glimpses into the inner workings of her mind. She has no grasp of tact, nor the subtle rules and unwritten mores of society. Trying to teach them to her is a bit like teaching a fish to ride a bicycle: it won’t thank you for it; it has no use for it; and everyone wonders why you are bothering. 

I have some examples of what I mean.

1. Recently my parents in law came to visit. They adore my daughter (I’ve yet to find anyone who doesn’t) and, to my great relief, are willing to look after her for some time whilst they are here, so myself and my husband get a much-needed break. At the time of this instance, my fae had corralled both her grandparents onto her bed (whether they wanted to be there or not) to watch something on her iPad. In her mind a disaster occurred – the iPad was locked; so she did what she always does when she encounters a disaster: 

“MUMMY!!!!” The scream was loud enough to resonate around the house and deafen her grandfather. Her grandmother took the time to kindly explain that this was not the correct response, that she shouldn’t shout but should go find mummy, and ask nicely for what she wanted. My daughter thought for a moment, dismissed the idea completely, and firmly informed her grandmother “No. Shout.” Before screaming “MUMMMMMMMYYYYYYY!” again. 

To be fair, it is more efficient. 

2. At the weekend, we take her to an activities centre set up specifically for neurodivergent children, adolescents and their siblings. She has a close friend there, who for the sake of this story we will refer to as Mary. Mary and my daughter will always greet each other with big hugs, run off and start an activity together, and for the next two hours they tend to ‘happen’ to each other at various points in the centre: it’s a bit like Brownian motion, some times they are together, sometimes in completely different areas, but they always end up together in outdoor play. Last Saturday, they were in the sandpit near the end of the session. My daughter was on a static excavation/digger contraption when Mary darted into the hole she was making. With a huff she once again shouted “Mary, move!”. When I attempted to correct her (I’m trying to get her to remember her manners) and pointed out ‘we don’t say it like that’ she did, to her credit, immediately try again. With “Move, Mary!”

Through fits of giggles, I did point out we don’t ask like that either. The look I got clearly expressed that there were only two words, so how many more ways were there? Fortunately, at that point, Mary decided to get out the hole on her own, having been oblivious to the entire conversation; but that’s neurodivergent kids for you. 

3. There are times at the weekend when, for the sake of his sanity, we try to get the fae father to go away for an hour or so, to have a little bit of time for himself. This weekend, when he came back, myself and fae were in the garden planting seeds. She took one look at him, and immediately ordered him to leave, as it was ‘fae – mummy time’. She has also been known to insist that he go back upstairs to his office (get back in your box!) so she can have an “upstairs cuddle” regardless of what he may be doing at the time. 

I have also been told that I put sugar on her porridge wrong, and I’m to sit at a specific point at the table. 

This can’t be just my fae, and as this blog is really feeling like shouting into the void, I would really like to hear any funny anecdotes you have about your fae, so please leave a comment!