A new take on a balanced diet

So our fae has … interesting eating habits. That is to say, if she eats, then she has interesting eating habits. She has habits similar to a snake, in the way that she exists.

She will eat her own body weight one week and then for the next month live off air and water. It’s most frustrating. If she is going through a growth spurt I can’t shovel enough into her to satiate her appetite. I may have mentioned my frustrations with her diet before once or twice (or every other post). But recently she has driven to new heights of frustration with her new habit of wanting only one type of food at a time.

So, from November to January she would only eat dahl and rice. She completely depleted our stores of the stuff. I then went through the agony of making three fresh batches because the first wasn’t the right texture, the second the wrong shade of beige, and the third was the last try at remaking the original. She wouldn’t even touch them. It was soul destroying. I just managed to make some she would try when she decided that what she actually needed to eat was potato waffles.

So February every meal was potato waffles. She initially wanted it served with a fried egg (that she would ignore) but she would only eat potato waffles. This month, it’s porridge. She has three or four bowls of it a day. 

It’s driving me insane, despite the reassurances of the dieticians and school that she is fine and obviously gaining enough nutrition from somewhere (I’m beginning to suspect she is some sort of coral and is relying on a plant symbiote to sustain her through photosynthesis). I take comfort that if you average out everything she has eaten since the beginning of the year, it IS a balanced diet.. she just does it in blocks of a few weeks rather than on a day by day basis. Better than nothing right?

Standoffish or hyper-affectionate?

When our fae was first diagnosed I was warned by many people that she would not like cuddles or being touched at all. I was told this by well meaning people full of sympathy. If I was able to raise a single eyebrow at that I would have, as it was I just smiled sardonically and nodded. My daughter has a lot in common with a python: She likes to grab onto you and Not. Let. Go. There have been times that I have been concerned about my ability to breathe when she has latched onto my neck. 

In fact, our daughter is not standoffish at all. We have the opposite problem. She is hyper-affectionate to everyone. She doles out hugs and kisses like they are going out of fashion, she high-fives everyone from the shopping trolley as we walk around the supermarket and will latch onto random parents (and grandparents) at soft play and encourage them to join in. Leading to often awkward conversations where we try to explain delicately that octogenarians generally are neither necessarily willing nor able to crawl through tunnels or dive into ball pits. 

She has also been known to dive bomb any available adult already in said ball pits, and on one notable occasion hugged an electrician as he arrived at our house. This was of great surprise to him and chagrin to us, as he was only coming back to fix the mess he made by flooding the kitchen the day before. None of this really worries her though. (For future reference if your electrician needs to know in a hurry where the stopcock is. it’s not a good sign!)

Her latest favorite targets are the teachers and LSAs at her school. She has used this to great advantage to ingratiate herself with all staff that work there. It turns out that the secret to success in school is to be non-verbal and hug a lot. Being small & blonde with big blue eyes probably helps, but mostly it’s not speaking and hugging. 

So where am I going with all this? Autism is a condition that was first studied and predominantly diagnosed in boys: this is a statement of fact. It turns out, it can present very differently in girls, also a statement of fact. It turns out that girls can, and often unknowingly will, ‘mask’ their symptoms better – probably fact, but I can’t find reliable sources to hand on this, just a lot of anecdotal evidence. So, just because your fae doesn’t “tick the boxes” for Autism (and especially if they’re a girl) it doesn’t mean they are not on the spectrum. It is a spectrum and it can present very differently in girls to boys. 

Finally, what I have noticed is that how my daughter’s autism affects her is changing with her age: she has recently become very sensitive to noise and school is now exhausting her in a way it never used to. She stims more, and needs more downtime. You need to be flexible with your approach as age can, and for us does, play a factor in her behavior.

Do you know where your towel is?

I am a massive fan of Douglas Adams. You probably guessed that from the title of the post, but I assure you, it has relevance to the topic in discussion. Whenever we take our daughter out, I carry what I still refer to as “a nappy sack”, although it has rather evolved from the days of milk bottles and muslins. It can feel like I’m carrying around a small elephant, and the car often insists I have a passenger when I dump the bag on a seat. However, I have yet to find anything that can be removed. With that in mind, I present to you a list of things that I feel are singularly essential to carry with you on day trips when taking your fae out. 

  1. Spare nappies / underwear: depending on the stage of toileting you will at some point need this. We can go weeks without needing any but then she will be too busy playing and suddenly we are back to needing changes of everything. 
  2. Wet wipes and nappy bags; these are so useful for clean ups and bagging wet clothing etc. I use wet wipes that only have water in them so I can safely wipe faces and hands down when eating. 
  3. Spare clothing: even if your child is perfectly toilet trained (lucky you) they will still find a puddle/mud pile or paint. Lightweight clothing is easily sourced and vital – and don’t forget the socks.
  4. A towel. Grab a survival towel from an outdoors shop: they are small, light and a life saver; you can use it to cover dirty floors if you have to do clothing/nappy changes in disabled toilets as not everywhere has changing places. They double as blankets, dresses, head scarfs and you can dry things and people with them! 
  5. Soap leaves/hand sanitizer ; I prefer soap leaves and water as hand sanitizer does not displace dirt it just sterilizes it, but it doesn’t require water and will do in a pinch. 
  6. Travel size sudocrem / antiseptic cream; this is not only nappy cream but primary first aid for grazes, bites and stings etc until you can get somewhere to sort it properly. 
  7. First aid kit. I don’t need to justify this right? 
  8. Water/snacks. I swear most of our problems when out and about can be solved by the judicious application of one or the other. 
  9. Sun cream. Yes it’s winter, yes it’s single digits of temp, no you won’t remember to add it in come summer. 
  10. Radar key – if your fae still requires assistance or is in nappies beyond the safe size to use baby changers in public restrooms, you need a radar key. These open disabled toilets, if you have justification to use them get a key. Talk to a pharmacist. 
  11. Sterilising wipes/fluid: I have a 10ml pump bottle of Milton fluid in ours – it means I can make sure that any surface my fae eats off will be clean with a quick spray and a wet wipe. Of course she will then eat off the floor as well but at least I can comfort myself with the thought that I tried. 
  12. At least 2 packs of tissues. In different pockets – when you need them you don’t want to have to scrabble for them.
  13. Reusable straw: you can get metal ones that collapse down into little cylinders, they’re brilliant. It means that you can always get a drink whilst out with your fae that they can cope with. 
  14. Sunflower lanyard with your contact details: if your fae is a runner (like mine) and non-verbal get a hidden disabilities lanyard. They’re easily googled or found here: https://hiddendisabilitiesstore.com and you can tailor the card attached. We have ones for myself, my husband and our childminder. They explain she doesn’t speak, gives our names and phone numbers. Think of them as socially acceptable dog collars for kids.
  15. Emergency sweets (yes bribery) for when you need to move them: sometimes it’s inevitable you will need your child to walk past the scary dandelion or back to the car. 
  16. Personalized meds: that for us is asthma inhalers but it could be epipens, antihistamines and the medical warning cards etc.

I have to admit that we don’t use everything every time. Sometimes we use none of it. There are other trips where I come back with everything needing replacing or washing. Every time I leave it behind, we need it. So this is what I feel you need to make sure you can handle fae related emergencies in general. I also have things for me that include my notebook/sketchbook and many painkillers.

Have you seen our table?

We moved house (and county) last year. In the process we freed up some equity, which we resolve to use to “fae-proof” our new home. She doesn’t maliciously set out to damage things, she just.. “happens” to them. In our house, her name is now an adjective, used to explain when something has been inadvertently broken by her overenthusiasm. Unless items are exceptionally robust, they tend to fail her in-store testing. 

So, we needed to replace 3 bookcases, my desk, the couch, sideboard and table. As none of these replacement purchases were going to be inexpensive, we chose to invest in well-made furniture that might last, rather than cheaper pieces that would collapse in weeks. Most of what she broke was from a Swedish store that specializes in flatpacks. The table, however, was made of teak reclaimed from a Science lab: in its first incarnation it survived schools, fires, the occasional explosion and various chemicals. If you look closely you can still see the scars from its hard life. My father rescued it from an untimely death in the 70s and made it into a nice table, where it survived multiple moves, the childhood of both my brother and myself, and use as an engineering workbench in the garage. In fact, thinking about it now, I am astounded that in 3 short years our fae managed to “happen” to it in such a fashion to render it unsafe for use as a dining room table. Finding something liable to be more sturdy took some looking and a great deal of expense.

What we ended up with was basically a large slab of solid oak, supported by steel girders that look sufficient to hold up the house. It is complimented by two benches of similar construction: myself and my husband sit on one; our daughter spends meal times scooting, sliding and spinning around on the other, pausing occasionally for a mouthful of food. We also purchased a couple of chairs, on the off-chance we have visitors brave enough to endure a meal time with us. They don’t get used much.

Upon its arrival, we awaited our fae’s reaction: She’s not always happy with changes. As it was, however, she loved this table. She loved that you could eat on it, play with it, and make a blanket fort under it. She thought it was awesome. No, seriously, awesome – to the point where, for 6 months after its arrival, if you came within a 15m radius of the house, you were dragged into the dining room to admire it. Neighbors, friends, family, the postman (actually any delivery driver), the gas engineer and the man who was there to read the water meter – they were all irresistibly hauled in to stare in bemusement at this large lump of tree, whilst this strange fae creature blinked up at them in silent expectation of their reaction. They would become more and more awkward as they floundered for the response which would release them from this unexpected challenge, before turning beseeching looks on myself or my husband for the answer to this puzzle. 

Depending on who they were and how annoying they had been (in the case of the gas engineer who had taken an eternity to figure out how to fix the boiler) we would let them squirm from a bit. It was amusing. 

I was almost sad when she stopped. But at least there are no more strangers suddenly appearing in the house.

5 Going in 15

In the past week I have heard phrases from my 5 year old I thought I had at least another decade before we had to deal with. If I hear ‘it’s not fair’ one more time I can’t guarantee that I will respond in an adult fashion: There is a good chance I will break into song with “I think you’re really mean”

Childish? Yes? Inappropriate? Yes? Satisfying? SOOOOO yes.

At the moment I’m keeping my inner child in check with a steady diet of cola and the promise of punching virtual people later (side note: VR headsets are therapeutic as they offer a form of escapism that is unrivaled).

She has also discovered that her clothing has pockets, and has taken to slouching around the house hands in pockets, shoulders rounded, huffing like an asthmatic in a marathon when told to come to dinner or tidy her toys.

I oscillate between exasperation and amusement at her antics. I want to know how I sent a 5 year old to school and picked a 15 year old up later in the day. Anyone know? 

Have you tried therapy?

People seem to think that therapy is some sort of panacea that will cure all that ails you. It sounds so simple: find a counselor (how is glossed over); tell them your problems (implies you know the root cause of your issues rather than just being depressed/stressed/anxious); and they will wave a magic wand and fix it. Simple, right? 

I’m on my 6th therapist. The Fae father, his 3rd and that’s just this year. I am beginning to think we are untreatable. The first session is always the same; it starts with sitting down and explaining the problem. Right: so we talk through our daughter’s needs; our lack of time; our stress and exhaustion. We really need someone to help us figure out how to de-stress and get more time to ourselves.

They nod thoughtfully and tell us that we seem stressed and if we were less stressed things really would be easier for us. I try not to roll my eyes at this. It is at this point that 4 of 9 therapists have told us basically “good luck with that” and said they can’t help. 1 didn’t even get that far, just read our file, laughed and said NOOOOO. To be fair, one that saw both the fae father and myself actually made it through two whole sessions before saying we seemed to already have everything as figured-out as was possible, and wished us all the best. 

Out of the remaining: one quit; one told me she can’t do any more unless I’m prepared to work with other people; and two told me I needed more sleep (well I’m glad someone told me that, I never worked that out myself).

Oh, this list is not including mister “I can’t help you when you’re being this logical”. 

So, in answer to “Have you tried therapy?” Yeah, we tried, but apparently we have the wrong sort of problems.

Onto the next option, I guess: Who do we talk to to get the good drugs?

Birthday Blues

So, right now, I’m not sure when I last updated. For the last two weeks, we have been rather stressed. Actually, that’s not quite true: we have been rather stressed since the birth of our daughter, and that has been ratcheted up to 11 since the Christmas break.

For the past two weeks in particular though, wow: I haven’t felt this worked up in years. It was our daughter’s birthday. She turned 5. We wanted to celebrate so we booked her a party room at a local soft play centre.

The first blow came in the form of a present for her from my parents and brother, whom I can only assume I have unknowingly offended. I can think of no other reason why they would club together and buy my non-verbal, autistic, sensory seeking child a guitar.

I mean really?

really?! 

In terms of appropriate presents, this is up there with glitter bombs and drum kits. I have no idea what thought process was going on here, other than maybe that because my brother is highly proficient at playing guitar and my daughter likes listening to it she may like one. She also likes watching ‘clickspring’ on YouTube, particularly the series when he makes a skeleton clock from sheet metal – but I’m not going to advocate buying her a lathe and etching machines. 

For the past several days, she has been intermittently dragging the sodding guitar out, smacking the strings in a tuneless din, then crashing it into the nearest piece of furniture. She will then burst into tears when told to be careful.

They also got her a book on how to learn how to play… she can’t speak and they are under the impression she can read…. Words fail me. 

Still, all that aside, we plough on and send out invites to all her friends with an RSVP. Sidenote: people, RSVP stands for Répondez S’il Vous Plaît: this means please respond with “yes” OR “no”, NOT just tell me if you’re coming! It’s very frustrating trying to work out if non-responses mean no-shows.

Anyhow, I guessed at numbers (the number of responses plus one extra on assumption); ordered cupcakes on a whim from a baker who lives two streets away – that worked surprisingly well – and fret about the oncoming onslaught.

Things eased a bit with the arrival of her other grandparents, who instead of large noisy presents brought a highly-extravagant home-made chocolate birthday cake. And then the big day arrived, and I can’t recommend this way of holding kids parties enough: you take them to a large, enclosed environment where for 90 mins they run themselves ragged whilst adults chill out and drink coffee; then they are called into a side room where they sing happy birthday and are fed before being politely – but forcefully – told to leave at the end.

So you leave all the mess behind and swan off. Marvelous! I have no idea what I was worried about. In a few days, hopefully the last of the stress will unwind and I will be able to sleep again. At that point I may contact my relatives and enquire about the guitar: you never know, I may have lost the urge to insert it in someone by then.

The correlation between genius and common sense.

This is going to take some justification, so please stick with me. From my observations, and I accept that I have done no scientific study on this (but I’m beginning to think that I should!) I think that there is an inverse correlation between intelligence and common sense. I have seen evidence of this both as a teacher, and in my own family. I have several examples that I shall present in evidence of my case. 

My brother is undoubtedly a genius – really, our parents had him tested – he was (I’m not sure if he maintains it) a member of MENSA, and has an exceptionally long list of academic achievements. None of this stopped him testing the temperature of water in a kettle by pouring it over his hand, nor from shaking a bottle of ketchup after he’d removed the lid. An incident that went down in infamy, as we happened to be in a hotel dining room at the time. 

Fast forward a number of years, and he had graduated with degrees in maths & physics and a PHD in physics, and was doing a postdoc at Oxford. He and his wife (who has a PHD in electrical engineering, and also falls in the genius category) had a microwave that ‘suddenly stopped working’. He came in ranting about testing the circuitry, wires and various other parts – he had taken it apart to base pieces. I listened with half an ear whilst reading Harry Potter and casually asked “Did you check the fuse?”. The silence was resounding, broken by him stomping off. He decided it was his wife’s fault. I haven’t let them live it down.

I have taught a number of top sets in my long and arduous career at the chalkface. Being in a top set for Science, and more specifically top set triple science (which in most schools these days is an option and will fill at least a third of your timetable with science lessons) requires a significant level of dedication. I once asked a triple class to turn to a page and familiarize themselves with the content while I took the register. A little voice piped up “Do you want us to read it, Miss?” Rolling my eyes in exasperation, my sarcastic reply was “No I want you to stare at the pictures!”. I finished registration and looked up to see them all dutifully not blinking at the diagrams….

Strangely, a member of the same class came back to the Science department later in the week in a fluster. He was lost, he had no idea where he was supposed to be… and it turned out he had got the day wrong. Which was why he couldn’t find the gifted and talented meeting he was looking for.

I could go on, but the point of this post: my daughter is in a special school, and now on the gifted and talented pathway (things I thought mutually exclusive). She is exceptionally good with numbers and pattern recognition, but still hasn’t worked out that if you spin around on a waxed hardwood bench in a polyester onesie (see the Exciting Adventures of SuperRainbow) you are going to fall off at speed.

It does polish the bench nicely though.

Do it with Mirrors

I have, for the past few years, joined the lament of parents the world over of trying to persuade my child that they need to brush their teeth. This argument breaks down into 4 main parts: that she doesn’t need a separate toothbrush for her ‘back teeth’ and ‘front teeth’; that she doesn’t need me to caterwaul “Baby Shark” whilst she attempts to undertake the task; just eating the toothpaste is not only not good enough but ill-advised; and, finally, necking a glass of water straight after waving the brush in your mouth for 2 seconds is not the same thing. 

It is surprising, the number of everyday objects that find novel uses when trying to bring up a neuro-divergent child. Up until recently, I alway thought that a shaving mirror was predominately used for shaving. I have been informed that I am mistaken in this assumption: What it seems is its main use is to allow small children to inspect their gnashers to make sure they are clean. The name ‘shaving mirror’ is misleading, it is actually a ‘dental inspection mirror’. 

So it is with great joy I present to you our new strategy for getting fae to brush their teeth: try giving them a shaving mirror – ours spends a lot of time staring at her reflection (I think she was a budgie in a previous life) and will rigorously study each of her teeth to make sure they are clean before relinquishing her brush in the evening. She has conceded that maybe, just maybe, I wasn’t just being a pedant, and there really was a reason to scrub these little bony protrusions. 

Of course this only works if your fae (like ours) has an obsession with things being clean. 

Disclaimer; if your fae still thinks they’re a budgie don’t give them the mirror – they’ll headbutt it.

Dreading the Weekend

In a weird twist on the standard I have noticed that, since my fae started schoo,l I have started to dread weekends. I am wondering if I am the only fae parent out there who finds this? 

My daughter loves her school; she loves being challenged both mentally and physically; and her school caters to her needs wonderfully. This unfortunately means that come the weekend she gets very disappointed that she is not going. Then we have to brave all five stages of grief over the 48 hour period before Monday rolls around again. 

  1. Denial – she will point blank refuse to admit she is not going to school. This takes the form of moving the day marker on the calender to ‘Monday’ repeatedly and pointing at it; putting her school uniform on; and all out refusing to hear anything that doesn’t fit with her model of the world. 
  2. Anger – this stage lasts the longest and is normally the most draining. She will scream, rage and throw things. She will also refuse to do anything you ask. Everything is ‘yucky’ and I mean everything: her hair; clothes; food; her favorite TV shows or toys… all is ‘yucky’. She will just scream and throw herself on the floor. The only winning strategy is to walk away. Have you ever walked away from your own child when they are obviously in distress? Can you tell me how you managed it because I can’t do it. 
  3. Bargaining – offers of hugs, sweets, anything will be made to coerce you to take her where she wants to go. She will repeatedly ask to see if she has been successful. It’s heartbreaking and there is nothing you can do to make this better.
  4. Depression – cuddles any one? Shame this is accompanied by a complete lack of appetite and disrupted sleep..
  5. Acceptance – at this point we may be able to successfully undertake a family outing that is actually enjoyable. Possibly. Sometimes it works, sometimes it falls flat on its face.

So by the time Sunday night comes round we are all looking forward to a break that comes with Monday.

And to think there was a time I used to look forward to the weekend..