The Flight of the butterfly

So despite our best efforts to distract and divert, our daughter has sadly not forgotten about the blue wings. So, with no small sense of trepidation, I logged on to that great warehouse in the sky and searched the South American river. It was with great relief that an acceptable set was found: A set of floppy, nylon butterfly wings complete with antenna headband. Unfortunately, she also spotted a rigid pair of light up wings that were to fit an adult. Lucky me. 

Sure enough, within 24 hours both sets had dutifully shown up in an oversize brown box and a hopeful little face excitedly donned the wings and headband, then promptly threw herself off the nearest bookcase proclaiming she could fly. No amount of evidence will convince her she can’t, and she has taken to throwing herself off high objects again.

Luckily the flashing lights on the wings she insisted I wear seem to distract her and, when outside, she feels the need to stop and attempt to drink nectar from every flower. This act is impeded by the lack of a proboscis, but it’s safer than the flying attempts, so for the moment I’m not going to dissuade her. 

When her father finished work and found her (happily) and me (grumpily) wearing wings, he was promptly interrogated as to where his wings were. Her brain screeching to a halt was visible when she was told he didn’t have any. She looked from mine to hers, and then back to him, and looked very confused. Then back to me, with big puppy eyes, before asking her father what colour wings he would like? 

So guess who has a nice set of green wings now?

Rolling with imagination

My fae has an imagination that is, at some points, a strange and scary place. I have heard it said that children with autism lack this singular human quality, and I have to say that in our experience, that is total hogwash. Not only does she demonstrate imaginative play, she will insist that we play in whatever world she has created with her. This has the singular disadvantage that while she can see and hear what is going on, we have no idea!

I have often watched in complete bewilderment as toys are moved from the top of her pup tower (see the numerous references to Paw Patrol) to book cases, to the floor and back again. This is accompanied by a continued narrative that makes no sense in her own language apart from the occasional outburst of “No Mummy!” when I get things wrong. 

I spend hours moving various toys around having no idea what I’m doing and hoping that I’m playing the game correctly, I guess I must be because she keeps making me play it. On one memorable occasion, she tried to make the cat play. The cat being infinitely more sensible than I gave her a look of absolute contempt and sauntered out of the play room with her tail held high in the air. 

My husband has it worse, though he did bring it on himself. While I have to shift toys around, he has to continuously lift our daughter in the air while she thrusts one little fist forward proclaiming that she is Superman and that she is needed to rescue a duck in a tree, or a unicorn. This has brought many questions to our minds. Why was a duck in the tree? Why doesn’t it just fly down if it doesn’t want to be in the tree? What’s the problem with the unicorn?? 

The answer to all these questions seems to be “SUPERMAN TO THE RESCUE!!!!!” to be repeated at progressively louder volume until she is ‘flown’ to wherever she has deemed said duck or unicorn is.

Last night, before she would eat dinner (porridge again) I had to spend some time calming her down from a total meltdown caused by her lack of wings. Blue wings. Apparently she has decided that the only impediment to her ability to achieve self-propelled flight is my failure to procure for her a pair of blue wings. I am an asshole. 

Anyone know where you can get blue wings to fit a tall, skinny five year old? Ones that will work

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

Carers together

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)

Discounts

Max Card

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.