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!

The saga of pirate pie

Yes this is another post about attempting to feed my fae. It is a subject that occupies most of my waking hours, so deal with it!

Yesterday, I was elated by the first signs that my child may actually have a food preference that she would be prepared to eat. She turned from the television, which was at the time presenting the trials and tribulations of an anthropomorphic coral polyp, and announced she wanted Pirate Pie. Of course, she wants a food that is from an Octonauts cartoon and made from ingredients that don’t exist in the world we inhabit. According to the cartoon we need coral slime (very important), essence of peg leg, powdered parrot feather and a multitude of other improbable things.

Well, that’s not going to stop me: if she will eat it, I WILL find a way to make it! So, with the challenge accepted, I spent the day mulling over how to make something that doesn’t have any relation to real life. It was fortunate that, a few days before she made this announcement, my husband found on YouTube a recipe to make tofu from pumpkin seeds and this was something we had tried, since tofu is a soft, bland, homogeneous food we felt might make a good base to feed to her anyway. It turned out that, despite the promises of it being ‘delicious,’ it was in fact utterly tasteless and made us question if it was worth the effort of chewing. 

But it is also slightly slimy and a disturbing pale green colour. In short, when looking for a substitute for coral slime, it’s perfect! If you dump enough curry powder (powdered parrot feather) on it, it also becomes palatable, if slightly brown. So, now having figured out how I’m going to fake.. err.. ‘replicate’ the important ingredients, I added a few optional extras: sweet potato, onion, garlic and ginger (because pirates like to chop, chop, chop) and simmered the whole lot in vegetable stock (essence of peg leg). 

I cheated, and bought the puff pastry to make the top, complete with skull and cross bones. 

So, my fae and I spent the afternoon chopping, mixing, smashing and rolling and produced a pirate pie! Even better, when it came out of the oven she said it looked ‘yummy’.

2 minutes before we sat down to eat, the fae father cooked something that made the kitchen smell, and that was enough for her to decide that it must be the pie, it was therefore yucky and she was not going to even try it. She wanted porridge instead. Sometimes, you just want to break down and cry. 

She refused point blank to even try the bloody thing, she wouldn’t even say why. Under careful bartering, she (reluctantly) agreed to eat one mouthful on a poppadom, providing she got the porridge after.  

So, I go to make the sodding porridge. I place it on the table. She announces she doesn’t want the porridge, she’s going to finish the pie with poppadoms. 

I quit.

For those who don’t know it:

The pirate pie song

And if you’re interested Pumpkin tofu

Autistic burnout

Over the past few weeks our fae has started exhibiting some new and frankly bizarre (for her) behaviour: she has been refusing to see her out of school friends; to go to her childminder (who she loves); and, when her grandparents call, she tends to say ‘bye’ to them, shut the iPad, and walk away.

It has taken a while for me to realise that she is starting to suffer from burnout. She is coming home from school all social-ed out. All she wants to do in the evening is rock in her chair and eat porridge. I would like to say she eats something else during the day, but that would be a lie. She doesn’t scream, shout or meltdown; but quietly and firmly states that she is going home and doing nothing for the rest of the day. I know how she feels. Recently everything has been ‘too loud’ or ‘too big’ but I think this is just code for her being exhausted. 

I have been, sadly, very slow on the uptake on this. It is not something that happens because of each day, but is building as the academic year progresses. Dealing with cumulative stress is different from acute.  There is no quick fix, it’s going to take time and it’s now a case of coaxing her through until the summer holiday, when she can have a proper break.

Whoever says that children don’t need a long break in the summer needs punching in the head.

Cracking the 5 a day code

So, courtesy of an overdose of Cocomelon, I think I may have stumbled on the Rosetta Stone of getting my fae to eat somewhere near her 5-a-day! You will need: 7 different coloured fruits, ice lolly molds, sieve, a blender, freezer and time. 

We’re going to make rainbow ice lollies. If your child is anything like mine these will have to be accurate, so make sure you know your spectrum! I have tried a fair few different fruits and many work but I have found that there are definite preferences. 

Red: Strawberries, depending on the season and whether these are store bought, you may need to sweeten these. Raspberries also work but you will need to strain out the seeds. 

Orange: Mango. Oranges also work (what a shock!) but again you will need to strain out the pulp. 

Yellow: Pineapple (strangely this makes my tongue numb go figure). I guess bananas also would work. 

Green: Grapes. Kiwi seems to also be a favorite but I found that the seeds can make the slurry bitter, also be aware that kiwis have a high incidence causing anaphylactic allergic response so take care when introducing them to your child. 

Blue. Honestly? I cheat and use banana and food colouring. There is a rumour that blueberries work but these always seem more purple then blue. 

Indigo: Black grapes. Also those blueberries will shine here, but there are a multitude of fruits that work here. 

Violet: black cherries. Blackberries, blueberries, plums there are a lot of things that work. 

Make sure you freeze each layer for at least 15 minutes before adding the next, and leave in the freezer overnight at the end. Mine always look like a bad acid trip rather than neat layers but that’s the price I pay for being impatient.

You can strain all the fruit but that will diminish the flavor and it will reduce the fibre content as well as some of the micronutrients. Despite the lack of added sugar there is a lot of natural sugar in fruit so you may want to limit the amount they have a day, but honestly for a child that was living off crisps and potato waffles, these are a massive improvement in her diet. I would love for her to eat a regular amount of fruit and vegetables instead of going through this performance but if going through it will get something sort-of-healthy in her, I will do it.

Masking Problems

We recently discovered that our daughter has a remarkable ability to mask when she is uncomfortable in situations. Unfortunately this is incredibly common in children with autism, and it can be exhausting for them. My daughter finds noise distressing. She covers this at school (apparently) so well that I have been told that she has “no sensory issues”. I know that this statement is false. I have been irritated by it to the point that I have taken videos of her jumping off 7ft platforms into my husband’s arms. If my husband hadn’t been there, she would have still jumped and just been surprised when she hit the floor.

In the past few weeks, she has been refusing to attend her childminder sessions, claiming that they are ‘too loud’. This despite loving her childminder and having friends there. Interrogation of a barely verbal child is not something that can be achieved easily, nor quickly. It is akin to probing a particularly sensitive tooth and requires patience. Rum also helps. (For you, not the child. Although… no keep the rum for you)

From what I have been able to piece together from discussions with her teachers, LSAs and my daughter, they have begun bringing her into the dining hall early in the vain attempt to get her to eat. The dining hall in schools – for those of you who have repressed the memory – are an unimaginable din of all types of noise: the crashing of crockery; the shouts of students attempting to be heard over the conversation next to them; and teachers trying to maintain order over lunch queues. There can also be the hiss of dishwashers, and the screech of chairs on the linoleum… I can’t help but think that in a special school that there would be even more mixed into the cacophony. She comes out of school and just wants to go home and curl up. 

This weekend, we got her some ear defenders. We took her to a largish soft play area, explained what the ear defenders were and allowed her to try them on. At first she was unsure, taking them back off and just carrying them around in her hand. But then as the play area became busier and thus noisier, she fell in love with them. She kept them on, would run up to us, eyes alight and place a finger to her lips going ‘shh’ – her way of explaining that she liked how they made the world quieter.

She was so happy that she could stay and play throughout the whole session, she kept them on all day. Today, she insisted on wearing them to school and felt so much more confident that she even left her security toy (a small plush dog) with me. So I was once again irritated to be greeted at the gate by an LSA who told me she “had no problems in the dining hall” – it was only when I pointed out that she was masking, that it was causing her distress, and that she was having to decompress from it at home, that I was assured that she would be allowed them. I will be following this up tonight. 

So, is she ready to return to the childminder? Well, I’m hoping so! We’ll find out tonight. Wish me luck!