Today’s mystery object

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

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

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

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

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

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

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

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

I don’t care what it says

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

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

Moving on.

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

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

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

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

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

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

They just won’t get it.

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

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

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

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

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

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

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

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

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

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

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

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

Sometimes you shouldn’t need to explain them. 

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

The no-win situation

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

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

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

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

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

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

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

The myth of Socialisation

There are many myths surrounding spicy kids. My favourites are that all ASD children behave in set patterns. 

E.g. ALL of them will avoid eye contact – I know of some pediatricians that are guilty of this one and have denied diagnosis on the grounds of ‘they made eye contact with me’. Let me tell you it’s bollocks. Fae children may not know how to make the appropriate amount of eye contact; for a long time my daughter was happy to stare into your brain and devour your soul. Recently she has decided that she will save this for people she is comfortable with, but the rest of you she won’t look at. 

That they are either hyper-intelligent or unable to care for themselves. Again this is not true either. It is a spectrum, and as with any spectrum there is a range of abilities. It also depends on the topic. My 7 year old basically just taught the unit on dinosaurs for her teacher and certainly knew more about them then any member of staff. That doesn’t make her necessarily more intelligent or capable of surviving on her own. The only dish she could cook for herself (with the aid of a microwave and making a huge mess) would be porridge, and she can’t tie a shoe lace. Some areas of her development are significantly advanced, some are delayed. 

And my favourite; they are anti-social and cannot make friends, nor are they interested in them. Oh, how much easier my life would be if this were the case. My fae child attends sports classes 5 days a week. This means I practically live at the gym, as does she. So every time we walk in the place, it is a given that she will meet someone she knows or a child that she has/had a class with. She is a bubbly, chatty, happy introvert. 

I know you think I mistyped that, I didn’t. Like myself and her father she is, despite all appearances, an introvert and socialising burns out her spoons. She loves playing with children of all ages, from babies to teens, and won’t accept that it wears her out mentally and will mean she needs to crash. She masks exceptionally well, which means the only people on the end of her burnouts are normally myself and her father. 

Still, getting her out the gym feels like playing bodyguard to a celebrity sometimes. This week I miscalculated after one of her swim lessons, and so we came upon the football changing venues as I was trying to get her out the door. A shout of “Hi Faechild” went up, and soon every child in the group wanted to stop and say hello to her. This was frustrating to the staff, who were trying to corral their charges into the new room, and to me as I tried to corral my distraction out the door. It took a good 5 minutes, and she still had to go back, because she missed speaking to one child in the group. 

Honestly, she doesn’t care if we arrive and there are no other children around, because she knows that she will be acquainted with whoever walks through the door when they get here. 

So, when it comes to diagnosis, can we please dispense with the myths and start taking a holistic look at these children? Stop just making snap decisions based on an outdated script that only ever fit one gender anyway, and was never fit for purpose. 

Parents evening

So, last night, I attended my daughter’s parents’ evening. This was an experience. I used to attend parent’s evenings all the time, but as the teacher – so it used to be an exercise in tactfully explaining to parents that the reason that their little urchin wasn’t getting the top grades in my subject (Science) wasn’t because I wasn’t teaching, but more because they were sitting in class scratching their arse, picking their nose or, on the rare occasions I trusted them to do practicals, burning their pens in the burners. So it’s always interesting to be on the other side of the fence. 

Last night, instead of how I have always had to conduct these conferences (in Arctic Halls or Sports facilities, with every other teacher in the school on tiny desks so we can all witness what the others are saying and – more importantly – what is being said to our colleagues) I was escorted to my daughter’s classroom, where her teacher went through her work to show that her handwriting was improving (there were indeed some recognisable letters now) and that she is blasting through her numeracy targets – not really a shock given her entire family is in STEM subjects. She then shows me the arts and crafts board. They are working on farm animals, and while every other child has made a fluffy sheep out of a paper plate and some cotton wool – with varying levels of disturbing eyes – my daughter has made a horse. 

This horse is a mini cereal packet attached to a large blue foam circle, two cardboard tubes for legs and a silver glittery pipe cleaner for legs. There had been a pencil smiley face scored onto the circle that denotes the head. I was glad someone told me what it was, because I would not have had a clue otherwise.  

She had also scrawled some red lines that apparently were supposed to be a sheep dog for the sheep on a piece of paper as well. I admire her spirit and will to think outside the box (honestly I think she’s lost the box – it may be the body of the horse) but when it comes to art, she makes a good scientist.

Backseat driving

Our daughter loves numbers. I have mentioned this on more than one occasion. Her love of numbers and sheer boredom in the back of the car has meant that she started taking note of road numbers. She then started taking note of the GPS in the front of the car. This child only has a tenuous grasp on left and right, but she will happily navigate you around her home town and the surrounding area. I don’t guarantee you will end up where you wanted to go, but, in the words of Dirk Gently, you may get to where you need to be. I think. 

She has also started arguing with the GPS about the best route, her Grandpa about the best lane to be in, and her father about the speed he drives at. She did think about having an argument with me about some point of my driving, but I responded by turning her music off and telling her if she did it again then we were listening to mummy’s music choice from now on, and she thought better of it. 

She is very insistent that you have to be in certain lanes travel at the speed limit and going in the correct direction, which is all very well, but as she doesn’t like the number ‘19’ (no idea why) and the main road that we have to cross to get anywhere from our house is the A19, this leads to multiple breakdowns as she screams that she doesn’t like the A19 and would in fact prefer to be anywhere other than on it. 

When I asked her for a solution to this problem she stated we should just engage the wings and fly. This is a feature I didn’t know our car had, but apparently it does and I’m either too stubborn or stupid to use it. 

She is also very certain that our car is the fastest on the road, the biggest and the best, and it can in fact eat other cars, as it is a shark-car – because it has a fin on its back. Trying to convince her that it’s actually a Honda Jazz and hence slow and small, with its only redeeming features being reliability and fuel economy, have fallen on deaf ears. 

Recently, she has also been having opinions on pedestrians, animals and cyclists we pass. I braked to avoid a puppy that looked like it was going to run into the road in front of us, and she decided it was a silly dog. When I asked in despair what I should have done, she said her imaginary friend would have got it.

I can’t wait for her to take her driving test, the instructor will say ‘look out, there’s a child in the road’ only for her to tell him her imaginary friend will save it and carry on. He will expect an emergency stop, and what he will get is an argument. 

Just don’t ask her to go on the A19. 

Books and butterflies

So, this week has been a little stressful. We had foolishly assumed with the recommencement of the school term things would settle down a bit. After all, I can drive again after healing from surgery (thank all the Gods I don’t believe in), half term is officially behind us, and routine can restart, right? 

Wrong. This week, there has been an interschool sports competition (she won a medal for winning the running race – this is not a shock) followed by world book day (I will be returning to this); her grandmother’s birthday; and as I write this, it is international woman’s day – which is being celebrated at our gym with a brunch. This means lots more people, food and general chaos. 

Seriously, I have never seen it this busy. We have had to fight for a table, but I once again digress.

So last week, with the knowledge that world book day was approaching, I asked my fae what books she liked and she blinked at me. I tried to explain that this was a day to celebrate books and what we enjoyed about books by dressing up as something from a book you like.

More blinking and then….

“Butterflies.”

Ok, Butterflies, when it comes to books, you like butterflies. So, we find an acceptable butterfly costume (a set of wings and a headband) and then set about rummaging through books to find an acceptable match. Yes, I know, this is not the way round you are supposed to do world book day. I doubt I am the only parent, and even if I am I don’t care, she has a costume she will wear and more importantly one that, after the photos are taken, she can remove and still be fully dressed. No, I’m not making her change. 

So she went as a character from the ‘very hungry caterpillar’. 

She liked the wings so much she wore them to football that night. 

It’s a hamster!

This week is, much to my dismay, half term. This is not normally something I dread, but right now, I am still very much in recovery (who knew having an organ removed was such a big deal?) and our direct payment support person has suffered three bereavements and so is unable to help. If it wasn’t for the support of our fae’s grandparents, I’m not sure we would be coping at all. 

Still, in an effort to not win the medal for most disengaged parent of the year, I did take my fae to the local ‘leisure farm’. This is, basically, a place that has sheep, goats, three pigs and a lost horse, in fields that are progressively getting smaller to make way for various activities such as rabbit and guinea pig petting, a sand pit & playground, and the saddest excuse for a soft play I have seen outside the local chain pub. 

Still, we paid a pound so she could have the honour of feeding their food to their goats – and that has to be the biggest con on the planet; you pay to go in, you pay to buy the food FROM THEM to feed it to THEIR animals.

I’m digressing, anyway, we went, and as it has been some months since we last attended – I think the last time was to collect (sorry, pick) a pumpkin off their field for Halloween – she spent a thoroughly joyful two hours running round exploring the play village (note to self: never live in a house she builds), playing in the sand pit, getting mud all over her shoes and consequently the slide, which she then cleaned off by going down it again and transferring the dirt to her trousers, and eating chocolate cake. Each change in venue was preceded by a happy chirrup, well, more of a demanding drill sergeant shout of ‘follow me guys!’ as we were matched off. 

So, myself and her grandparents trudged around after her, and tried to direct her attention to the things that we thought she might find interesting. Like the 9 day old piglets: “but mummy look at the POO!” Or the quail in the hatchery: “LOOK AT THE RATS!”. On the way out, she batted her eyelashes and managed to convince her grandmother to buy her a toy. She chose what I thought at the time was a little cuddly guinea pig. 

When she placed it on the counter to pay, it squeaked. Wonderful, it’s a squeaking guinea pig, just what we need. Well, she seemed pleased. On the way back to the car, she informed me it’s a baby hamster. Then asked what you call a baby hamster. Which lead to a frantic google search, as my memory failed me. It turns out it’s a pup. All well and good, but what she was holding was, in fact, a baby guinea pig. And while logic would indicate that an infant of those would be a ‘piglet’ it too was a ‘pup’. When I informed her of this, I was told I was silly. 

So, now she is attached to an oversized baby hamster that is actually a toy guinea pig, aptly called ‘Squeaks-a-lot’, which she has made a collar for from a bangle-making kit, and is dragging down the drop slide in a soft play. I’m not sure what Squeaks-a-lot thinks about this, but I’m happy it’s not me. 

I miss term time. 

Shh, I’m huntin’ shops.

My fae has an unquenchable need to run. It doesn’t matter where we are, or where we are going, she needs, Needs, NEEDS to run there. If we are going nowhere, she will run in circles. Recently, she has announced that she is not running but hunting. I asked her what she was hunting, and all I got as a response was ‘hunting’. 

This reminded me of an old Looney Toons character, and if you too are old to remember Elmer Fudd, then you too have a back that aches. AND you will realise why I immediately had an argument with my husband about whether it was rabbit season or duck season. Our fae then told us both to be quiet and we were both wrong. When asked again what she was hunting, we were once again informed ‘hunting’ before she turned into a fae shaped blur and headed off down the path. 

There is a reason that she goes to gym and sports classes 5 days a week. Mostly it’s self defence on my part, and the belief that the house would not survive if we tried to contain her in it for anything other than the occasional meal and sleep. 

Today, she was hunting on the way to school. She was hunting by running fast and screaming, when my husband – who was taking her – pointed out that all animals that were huntable would be timid things, scared off by loud noises and fast movements. She gave him a withering look and informed him she was ‘hunting shops’.  It was then pointed out that shops are, in fact, very easy to hunt, will not move out the way, and do not in fact require speed and/or power to track down. They, in fact, don’t move, and will be there regardless of whether you run or not. This earned him another withering glance, and she marched into school with no more said on the matter. 

So, either she knows something about the successful tracking and subduing of commercial centers that we don’t, or hunting means something totally different in the world of the fae. 

My money is on the latter, but when it comes to my daughter I never rule anything out.