The cyclic pain of the summer holiday.

Last week I didn’t write a post. This is because, like many of you, I am in the depths of the summer holiday. 6 weeks of freedom from routine and the humdrum of school and nursery life. For a lot of families this means the excitement of holidays in far flung places (or at least before Covid), lazy mornings and meeting friends. For most parents it’s a bit of a drag to entertain your youngling(s) throughout the time and wishing that flights were cheaper. If you have a fae child, however, it can be 6 weeks of meltdowns, tantrums, and frustration. They have just lost their regular daily routine, which is their safety net, overnight. This world of freedom robs them of many certainties they relied on. They can become very unsure, and this makes their behavior harder to manage.

 My daughter is normally the happiest little thing you have ever seen, but for the past week she has run me ragged. I have tried to keep with her regular morning and bedtime routine, but inevitably there has been disruption. Firstly, her childminder hours have been reduced, she now goes twice a week rather than every weekday. She doesn’t understand why she doesn’t see the same friends there, as some are on holiday, and some are simply busy. Her grandparents came to visit – which for myself and my husband was a relief but, despite how much she loves seeing them it comes with a whole level of change. She thoroughly enjoyed her time with them, but after two days, she just wanted to hide in her room and cuddle on her bed all afternoon. It was important to her that either my husband or myself was with her, but we weren’t to interact with her, nor her games. It’s a difficult balance between supporting and smothering.

She has needed more sleep than normal to cope with the upheaval. We have had to reintroduce nap time, and she has been sleeping later in the morning – a real benefit, at least for us!  Her eating has improved too: we had a ‘lightbulb’ moment where she would steal chips from my plate whilst ignoring the ones on hers. It finally occurred to us: the difference was that I had added salt to mine. So, in complete indifference to all known health advice, I started adding salt to her food. My husband also realized that all her food was, at best, lukewarm rather than hot; again, because I did start with the best of intentions on feeding my daughter the correct way. It turns out if you serve her lava with some salt on it, she will eat it. Who’da thunk?

Still, it is only the second week in August and I am fretting about school uniforms, pencil cases and book bags. I believe this must be a displacement activity, as every morning I wake up with a moment of blind panic about what we are going to do that day. So far I am trying to keep some semblance of normality, we go out in the morning and let her burn off the manic, and then chill out at home. We got her a new bike – her first with pedals (sidenote: teaching a non-verbal child to ride a bike is like some sort of bizarre game of charades with added metal contrivances). She spends the afternoons oscillating between being on her new bike and pleading to be allowed on her new bike.

This leads me to my current position, cooling down in my new gym’s café whilst trying to stave off a heart attack having worked out for the first time in four years. This is not penance but pragmatism; if she’s on a pedal bike, I’d better be fit enough to catch her on mine!

How’s everyone else’s summer going?

The blood and agony of bedtime routine (and why it’s worth it)

Our daughter has a bedtime routine. She will go to bed happily and stay there all night. On a good day she won’t get up until about 7am. On a bad day she’s up at 4am, on average she gets up somewhere between 5 and 6. 

This was not something achieved without significant effort on our part. For over 2 years we fought tooth and nail until we found the right combination of naps, activities and routine to make it work. The key is to tailor the process to what works for you and your family and don’t alter it. There are timeframes and certain chores that must be done at set times and then stay rigidly consistent. Before deciding to start instigating a bedtime routine, sit down with a planner or a notepad and map out your week. Anything that happens in that week that absolutely cannot be moved fill in first. That includes such things as jobs / school / regular medical or therapy appointments etc. Next spend some time noting when your child gets tired in the evening, and is ready to be put to bed for the night. NOT when you want to put them to sleep, but when they actually sleep. If this is later than 10pm, then you need to consider shifting or eliminating their last nap of the day. 

Once you have an idea of when you want to get your child in bed, you can work backwards. You want your evening routine to be consistent, regardless of whether it is term time or not. Consider that at some point, your child will be attending school, or factor in other children in the house already of school age. You may want to start sleep training during the summer holiday, when sleep deprived older siblings can catch up with lie ins, but that is entirely up to you. 

Next make sure the room you are putting your fae into is conducive to sleep. Temperature should be ideally between 16 – 20°C: this may be harder to attain in summer. We actually bought air conditioning units to keep the rooms cool, but this is a luxury that a lot of people cannot afford. A standalone AC unit can be noisy and cost a few hundred pounds. To get integrated AC cost us the best part of £5000. I don’t regret a penny of it, but it is a lot of money, and not an option for a lot of people. You can get a good effect by using fans and placing a bag of ice in front of them (put a tray under the ice to catch run off) or spritzing curtains with water and using a fan to cool them. Ceiling fans are also a cheaper option but require a certified electrician to install them. 

Temperature is a significant factor in getting your child to sleep easily. Our daughter can sleep through any noise – we used to walk her around the town in a chest sling to get her to sleep, and even sirens wouldn’t wake her. But being too warm would definitely do it. It’s also very dangerous for young children to overheat. Too hot is significantly more dangerous than too cold: children can snuggle up with bedding for warmth, and are likely to wake if they are too cold, whereas they can fall into a coma and suffer heat related illnesses when too hot. 

Try to keep the room calm; keep the décor from being over stimulating; flashing and beeping toys should not be in their rooms overnight – this is a place to sleep, not play. Place loud and exciting toys elsewhere; a playroom or family room. They can, of course, have their favourite stuffed toys (our daughter has the entire Paw Patrol and, at last check, a couple of Octonauts had snuck in) but if it lights up, talks, blinks, beeps or has at any point made me want to launch it out the nearest window, it does not go in her bedroom. 

Her room is painted in bland white and off-white shades; her duvet sets are mostly beige with a few characters from books or dinosaurs on them. Bright colours are for other places. It’s deliberately dull: there aren’t even any sheep to count because for her that would be too exciting – she loves numbers. 

We spent several weeks planning how to tackle her sleep routine before starting, and once we began we didn’t stop. Commitment is key: if you show signs of weakness, they will sense it. We figured out that 8pm was the sweet spot – the time where she was mostly tired, without being so tired that she went manic. We worked out that baths excited her too much to be the last thing she does before bed, so our bedtime routine started when my husband stopped work. He has half an hour to play with her. They may go in the garden and throw a ball around, or just chill out watching TV and building forts in the living room while I prepare her dinner (apart from when her dad cooks). We eat at around 6:30, and by “we” I mean her father and myself eat. She will sit on the bench opposite and may or may not join us: she has a troubled relationship with food that makes it difficult to predict. I rarely make her anything unfamiliar, there is always something she likes on her plate. If she eats, I sigh in relief and internally dance for joy. If she doesn’t, I will try to hide my disappointment. It’s no good coercing or begging, it doesn’t work.

We always finish the meal by offering her a yoghurt and asking her if she wants ‘anything else’: this is to encourage her verbal skills. She normally counts to 3 to indicate she would like three chocolate buttons. She has been known to try it on, and count to ten with a cheeky grin, but she knows that three ( if she eats really well, 4) is the best she can hope for. After which we wipe her face and hands regardless of whether she needs it (it’s a signpost that she can leave the table) and head to the bath. She has recently got into the habit of brushing her own teeth, although much to my lament I have to sing ‘baby shark’ while she does it. If I stop singing, she stops brushing. Still life is about compromise. By the time the bath is full (and I have caterwauled through the last do-do-do) she is ready to get in. Bath time is also used to encourage language by naming body parts as she smashes a sponge into them: she tries to wash them herself but often needs a little help. Drying her off is most often achieved by chasing her around the bathroom while she hides under the towel pretending to be a ghost. 

My husband will clear up from dinner at this point, while I create monstrosities from Lego with her, or complete jigsaws. At about 7:45pm we all curl on the couch and read from a selection of books. Her favourites are an illustrated version of “Rhyme of the ancient mariner” and Poe’s “The Raven” – both were bought as a bit of a joke, but she loves them. By 8 she is normally asleep or very close to. She has a signpost book, ‘Roaring Rockets’: we use it to say “time to sleep”, she uses it to indicate she wants to go to bed. Either way it’s the last book of the night. We then carry her to bed (when we started this, she was a lot lighter!) Originally, this was where the trouble started.

She would be fine until we had kissed her goodnight and left room. At which point she would spring to life and throw herself out of bed to follow us. We sometimes spent literally hours putting her back in bed, while she went through the gamut of emotions from laughter to tears to full out-rage. We would start at 8 and she might be asleep by 10. Some nights we were still fighting her at midnight. Only for her to wake up at 2 and start the whole thing again. I wanted to cry (I did often). Eventually (by that I mean after about 6 months of this) she stayed in bed mostly, but screamed and cried every time we left. We kept going in: we didn’t keep to the recommended “leave her 5 mins”, I was physically unable to leave her that long and frankly it seemed cruel. We began with a maximum of 20 seconds before going back in. The important thing was to settle her and leave. It didn’t matter how long for. We went through this phase for a long time too.

Finally we got to the point where we could put her to bed and she would stay and go to sleep without tears (yay), but if she woke at night she would still need the same amount of pain to get her down again. I caved: I was exhausted from this, so if she woke at night, I started bringing her through to my bed to sleep. Which marked me as a soft touch and probably prolonged the process. In my mind, I didn’t want her waking her father – who had to work then next day – with her cries.

It reached the point where we had to bite the bullet and go through the same rigmarole at 2am as we had at 8. That almost broke us, I think on my own I wouldn’t have managed it. I don’t know how anyone does. The only thought that kept us fighting was that we felt the need to crack this NOW, so as not to be still having this fight when she was 5 or 10. We got a gro-clock (these things can be magic) and informed her she had to stay until the clock face went from blue to yellow. This does two things: 1. It gives her a night light; and 2. The countdown and colour change is a clear boundary, she can rage at it not us; after all it’s not our fault, it’s that silly clock – because rules.

All in all it took just over 2 years. It’s not perfect and even this morning she was up at 5 but she stayed in her own bed until 6. 

So TL;DR: 

•    Decide on the routine that fits you and your family

•    Begin the routine at the same time each day

•    Turn off all tech well before bed

•    Calm activities like reading or jigsaws as a wind-down activity

•    Get a gro-clock (link below)

•    STICK TO YOUR ROUTINE

•    Accept it will take time, potentially years

•    Have a support network: you can’t do this on your own. 

So with that said, I’m still exhausted so while my fae is with a childminder I’m off for a nap! 

Don’t be shy; like, comment or share – it’s good to know we’re not alone with our struggles

https://www.tommeetippee.com/en-gb/product/groclock-sleep-trainer-clock

The Importance of Routine

I have recently been reminded of the importance of having a routine in the lives of fae children. In all children, in fact, but doubly for those of a neuro-divergent disposition. Routines and structure give children security and a sense of safety; without it they are more inclined to act out. Studies have shown that there is an increase in behaviour issues in children who don’t have a routine in their household: Anyone who has ever seen an episode of shows like  ‘Supernanny’ will know this, as it’s the first thing to be instituted. 

They can also be used as a way of reducing stress and frustration (and therefore meltdowns) in fae children. Especially if they themselves are included in the creation of such routines: It should not be a dictat from On High.

The routines in our house would seem, to the standard neuro-typical parenting person, insane. I am fully aware of this, and I don’t care. They have evolved organically for the most part, and they work. The key is finding what works for your family and sticking to it. We defend our routines jealously, even when this means we do not go on holiday and we have been known to (politely) kick out guests and relatives before 6 in the evening to maintain them. Sorry, not sorry. If it means I can get my daughter to eat her dinner AND sleep in her bed in the evening, you are leaving whether it’s politely through the door, or being hurled through the window.

Her breakfast routine is a prime example of this: it began when I started weaning her and found that she would accept porridge in the morning. This was a win for me, as porridge is reasonably nutritious, filling, and not loaded with sugar or salt. It is also quick to make. I told my husband how I made it one day, as I was busy with her. Since then, she decided that she will only eat porridge if daddy makes it (sorry daddy you are just going to have to get up every day and make her breakfast). It has to be made in the same bowl, mixed with the same spoon, and heated in the microwave. We’ve tried using the hob (we did that just yesterday, because of a power cut) and she simply won’t eat it. The milk has to be measured using a Tommee Tippee baby bottle (that we have because we used to have to use a special formula as she was allergic to cow milk and soya) because that’s what she can hold to pour the milk carefully into the bowl.

Once cooked (she HAS to push the button on the microwave) and sweetened with a multivitamin (can’t recommend this trick enough: you can use the syrup multivits to flavour porridge and get them into fae children, providing it’s all they’ve ever known), it is served in a long-suffering blue suction-cup bowl. The actual suction-cup part departed this world in 2019, but we are not allowed to change it out. 

We bought our dining room furniture with our fae in mind. It is made of oak and steel girders, and would be my first choice to hide under in the event of a direct bomb strike. So far it has also withstood the continual movement of our fae during meal times: she sits or lays or squirms or dances on her 6ft long, 2ft wide bench as she eats. She has the entire 6ft to herself, even if we have guests: they sit on the ends in chairs or squeeze on the other side with us. Otherwise, you end up with bruises from being used as a crash barrier, as she careens into you during intervals between mouthfuls of food. 

She still uses a sippy cup but I have been allowed to remove the lid so it is an open top beaker. She will not consider drinking from anything else during meals. We don’t fill it, we have a bottle of water and continually top the beaker up, this means when she inevitably knocks it over during her over-excited flailing there is only a little to clean up. We keep the bottle out of reach and she accepts that she’s not meant to touch it. Her dishes are moved to the same empty place mat off to her right when empty. She can also put things here unfinished, as a way to say she is full.

When she has finished comes the ceremonial wiping of the face and hands with a damp cloth. She doesn’t necessarily need it any more, but she’s used to it and now it’s routine and she insists and will not get down until it has been done.

This is not all the chaos, but the highlights, and most meals follow this basic pattern with where things go and how much effort is put into them. 

We also have similarly in-depth routines for bedtime and they start before dinner time! The main take-away point I would suggest is: turn off tech from dinner time. Screen time is very useful, but overstimulation before bed can make it very difficult for children to turn off and fall asleep easily. It can also affect the quality of sleep they receive. 

Our daughter finds baths very stimulating – she loves water – so we bathe her straight after dinner and change her ready for bed. We then only allow calming activities such as puzzles, lego and (probably specific to my child) mathematics – it’s her special interest and she loves numbers. 20 minutes before bed, we grab her favourite stuffed toys, a blanket and night-time books – we keep these the same each night – and read together. She may or may not fall asleep with us.

The last book of the night is always the same one, regardless of whether she appears to be awake or not. Like the hand-wiping at the end of dinner, it is a signpost. We use this book to indicate that it is now time to go to bed, so it doesn’t come as a surprise to her and also it allows her to choose that book if she’s ready for bed.

Signposting like this is useful because it means that we can communicate to our non-verbal child that a change is about to happen. But, equally important, she can indicate she wants that change. If she is tired and wants to go to bed, she will select the signpost book as a way to say so. If she wants a hot chocolate, she fetches the special cup her grandma gave her that is used for nothing else. And so on.

This allows her to communicate without words, reducing frustration. It is why routine is important. If A always equals B, then they can use A to tell you they WANT B. Building signposts into a routine helps prevent meltdowns, and eases frustration on both sides.

More on Eating and Feeding

Despite what the book said and the indoctrination of at least 50% of every baby aisle I did not go down the pureed food and baby jar route. I used baby-led weaning, and this was done after conducting a lot of my own research. By research I don’t mean I sat and watched you tube videos…well I did that too, but mostly ended up looking at cats falling asleep, so it wasn’t much help. My background is in science, so I sat down and found peer-reviewed documentation in reputable journals, and studies conducted by paediatricians. The reason I did all this? I was absolutely, irrationally sure that the first time my baby had solid food, she would choke to death. PPD is a bitch, and can lead to all sorts of anxiety that cannot be rationalized. This was not helped by everyone around me looking at me sideways, like I had grown another head. I am not prone to irrational behaviour, and so I found myself being dismissed with no one taking me seriously. With no other course of action, I used education to comfort myself. 

It was my brother who suggested I investigate baby-led weaning. He is one of the (if not the) smartest and most sensible people I know, and as such I take his advice seriously. So, with a starting point, I started looking through information he sent me, and then went and ferreted out my own. Baby-led weaning forgoes the puree stage entirely, and heads straight to solids. We started with slices of apples and rusk biscuits. She would merrily gum the biscuit for half an hour or more, and a slice of apple was an excellent way of removing most of the biscuit pulp from around her face and hair after! This meant she got used to the feeling of food on her gums and around her mouth from the first moment, and so we had fewer texture problems than some parents with fae children face. That is not to say mealtimes are easy, she still drives me crazy with her pickiness and outright refusal to eat on occasions. 

There are also things that if I had time again, I would not do and I would not allow: my husband has a love of “beige foods” – he is also a very picky eater – and he kept suggesting these as things to introduce to my daughter. At the time I was too tired to even think about arguing. If I could go back, I would stop the introduction of crisps and other such ‘junk’ into her diet at an early age. For the most part, her diet is more limited than I would like (a lament I am sure a lot of mother’s share) but there are more good parts than bad, and everything is in moderation. Yes, she has chocolate – but 5 chocolate buttons a day shouldn’t be the end of the world. She eats fruit, even if it’s limited to bananas, dried mango and the occasional slice of apple. She won’t eat vegetables that are recognisable, but her favourite meal is dahl so I can hide a lot in that. 

Things I would recommend to any parent would be; avoid purees, start on solids when it’s time to wean. Look for things that your child can grasp, gum and investigate. It gets them used to the feel of food on their gums. Let them play with it. Put a large plastic tablecloth or tarp under their high chair, because it is going to get messy (I mean, if you can afford to coat your entire kitchen in plastic wrap that might be better, as I was removing food from the ceiling, light fixtures and radiators.. but that’s all part of it, I guess). 

Have a large supply of muslins or cloths ready for wipe down, and get your baby used to having their hands and face wiped at the end of every snack or mealtime, regardless of whether they need it or not. If you have a fae child and this becomes routine, you will find that they will start to demand this at the end, and it saves a lot of fuss if they are used to it. 

Have a specific spot on your table/their tray where plates go when they are done. This is doubly important if your child is non-verbal, it gives them a way to signpost that they are finished with their meal. We have a separate placemat when she moves her plate to indicate she is done with her food. I can count the number of times she has cleared her plate on one hand and have digits left over, so having a way for her to communicate this is vital. It also gives you a way to signal that a course has ended, and you are moving on, which can be useful if you have an incredibly slow eater. 

Don’t make more than one meal. It sounds obvious, I know, but insist on ‘take it or leave it’: your child will not starve from missing a single meal. But you WILL run yourself ragged if they cotton on that you will offer multiple food choices if they reject the first. If you are planning to offer something they have never had before, make sure there is also a ‘known good’ on their plate – something they have eaten in the past and enjoyed. This means they have the option of trying the new food, but won’t go hungry if they don’t like it. It has been far and away the most successful strategy we have found for getting our fae to try new things. 

While on the subject of trying new things, as much as you may want to dance a jig and scream it from the mountains every time they eat something: don’t. A simple “well done” will suffice. You don’t want to put your child off trying new things because they dread the attention it draws. Similarly, meal times should be enjoyable for all, not a battle. Don’t engage with ‘I don’t like it’s’ or ‘I’m not hungry’. The answer is the same “that may be the case, but you will sit with us anyway because it’s family time”. Oh, speaking of family time….

Have a dining room table and no tech during meals, any distraction your fae can find to do anything but eat, they will take it. Set them up for success with a table, away from the TV (or at least switch it off) and no tech. Eat together whenever possible, at least once a day, and have a conversation with them: pretend it’s 1995 and talk to each other. You may need to give your fae some sort of fidget toy to get them through – we have a small silicon octopus that has pop-ups on the tentacles and is easy to clean with dishes every day so it remains hygienic. It’s never allowed to go anywhere, and she only has it at mealtimes, so it never gets covered with general grime. 

Get a plate with separate compartments so foods don’t touch; you would be surprised how much having different foods touch can be off putting to your little fae (yes I know they all end up in the same place and so do you but at this stage just roll with it!) There are many different ones to choose from in shops and online, if your little one is very independent (like mine) they may wish to choose their own, and that may encourage them to use it.

Be prepared to introduce foods more than once. Children’s tastes change as their taste buds develop; they can also take up to 10 introductions before they even decide if they like something. Fae children can also be put off by sensory issues on top of that if the texture or smell of a food is wrong, they can reject it without trying it. This is highly frustrating as a parent because, for example while my daughter will happily eat a slice of happily, she will not take a bite of a whole one. To her it simply isn’t the same thing. 

If your fae is incredibly picky it can be tempting to ‘hide’ food in other foods. Something I picked from reading (see previous link) is that this can be detrimental. For example, if your child will eat oatmeal and you ‘hide’ fruit puree in it by mixing the two together, it’s possible that not only will they reject the mixture but they will in future also reject the oatmeal as well, as you have made it unsafe. No matter how tempting it is to ‘sneak’ extra food in: be careful if you choose this approach (I’m guilty of it and have been caught out more than once to my chagrin)

Stick to routine. Seriously, you may not realize how important it is to your little one, but even for neurotypical children it’s important. For neuro-divergent children it’s a lifeline. Have meals scheduled so they know what time they can expect to eat, make sure they have at least one familiar food every time, so they are not overwhelmed. Routines and little rituals build security for fae children: some of ours are insane, looking at them, but they have evolved that way organically (and will be the subject of their own post).

Above all, keep faith: evidence shows that most children do grow to be less difficult as they get older (it’s the only thing keeping me sane) and it will become less difficult. I’m a realist so I’m not going to say it will become easy. Above all, look at your child, are they healthy? Do they have energy? Are they growing? Then you’re doing fine. It’s so easy to get bogged down by what we are supposed to be doing that we overlook all the good we are doing. Try not to worry too much about what your fae is eating at this stage – we’ll work on that later: so long as they are eating and they are healthy, you’ve got this.

Don’t be shy; like, comment or share – it’s good to know we’re not alone with our struggles

Advice for weaning

https://www.nhs.uk/start4life/weaning/what-to-feed-your-baby/around-6-months/
Welcome to Baby Led Weaning

Dennis the fidget octopus

Can’t eat wont eat

Can’t eat, Won’t eat. 

Our fae has the most esoteric eating habits. She will go through phases where it doesn’t matter what I put in front of her, she can’t eat it fast enough. It puts me in my happy place to watch my stringbean of a child scarf nutritious food down as fast as I can make it.

Then there is the rest of the time, where it doesn’t matter what it is, she won’t touch it. Which not only is frustrating from the point of effort and waste, but more importantly, she can go days with only sniffing food in passing. It is very stressful. Food that she found perfectly acceptable one day is now shoved aside without even being looked at. It can drive you to despair. We have tried begging, cajoling, bribing but nothing works.   

I have tried afternoons with a grumpy hungry fae child who hasn’t been given snacks, and she still won’t eat her dinner. I have tried afternoons where she has had fruit or crisps and eaten the lot and then eaten dinner. It makes no difference. 

Recently I started to wonder whether she had PDA and this led us down a rabbit hole, to a very useful book titled “Food refusal and avoidant eating in children, including those with Autism spectrum conditions. A practical guide for parents and professions” written by Gilian Harris and Elizabeth Shea. 

I wholeheartedly recommend it to any parent of fae children who struggle to feed them: aside from alleviating a great deal of guilt I had of the feeding habits of my daughter, it also gave some good practical advice, backed up by peer reviewed evidence (which made the scientist in me squeal with delight). It also introduced me to a new term: neophobia – which, apart from being a high score in scrabble, explained a lot that was going on with the thought processes of our daughter. 

Since reading and – if you pardon the term – digesting the information in the book, we have altered some of the interactions we have over dinner, which means we no longer comment or focus at all on our fae’s eating: if she eats, great; if she doesn’t then, well, at least we tried. 

It has a significant positive effect, as our little child is now investigating new foods and even taking the occasional bite of new things! She is also eating more consistently, so that’s a win too. The amazon link for the book is below if anyone is interested, and please do comment if you read it I would like to hear what you think.

The pregnancy and birth of my fae

Thinking back to the birth of my fae…. It could have been smoother but it could have been a lot worse.

Believe it or not, signs of the forthcoming arrival of a fae baby may start even before the birth. My first thought that we may be expecting one was when I found myself in an ultrasound room, valiantly trying to stop the descent of my maternity jeans with one hand, clutching a pointless piece of blue towel the technician had thrusted at me in the other, whilst jumping up and down like some sort of pogoing whale. All the while wondering if I would ever manage to pick my dignity off the floor again, or if I was going to give myself a black eye with one of my ever expanding boobs (which were not properly secured for this charade) just to secure my disgrace. The purpose of this farce was to try and convince my fae baby to stop mooning the ultrasound tech and turn round so they could complete taking the measurements they needed. It didn’t work. Nor did trying to bribe them by eating chocolate in the waiting room but I must say I found that method much more enjoyable. 

Going home, I returned some days later with more appropriate attire, making me look like I was about to attend some sort of brutal crossfit class rather than a sonogram. I left feeling embarrassed about the sports bra and leggings I had worn, incase I was expected to perform aerobics again, clutching the pictures of my little girl who to this day I swear was smirking at me. 

My fae baby is stubborn. This fact became clear rather early on, and was dealt with in the first trimester by giving them the in-utero name of ‘This is Your Fault’, a moniker that remained until she was finally named around 12 hours after we finally met her face to face. She had a habit of playing havoc with my internal thermostat. I am part reptile, if I am lucky I can sometimes make a thermometer reach 36 degrees C, I accept this. Having a downstairs driver stoking the fires to 37 or above in the middle of summer was very uncomfortable. Then turning round and kicking my lungs was just plain mean. She was very good at hide and seek. Anyone who thinks it’s impossible to play hide and seek inside another human body has never heard a midwife mutter ‘can’t find the head’ while prodding unpleasantly at your distended stomach. 

As a first time mother, this was not a reassuring thing to hear. I was fairly confident that I would have noticed if this had fallen out somewhere… but maybe that last set of squats was actually a bad idea. Even so, someone would have said something right??

Being sent back for another scan and seeing that, once again, your child is taking the opportunity to display their backside to medical professionals, despite your whale-pogo-stick impression makes you evaluate some of the decisions you have made in the past year. Taking no chances this time, when sent out to consume a ‘small amount of sugar’ to get her moving, I chowed down two chocolate bars, a bag of jelly tots, and a packet of dextrose tablets which I washed down with a glass of undiluted squash. Sure enough, this time she was moving but, alas, I was not able to procure more photos as apparently both the baby and myself were vibrating so badly the pictures were blurry. 

My baby was in no hurry to join the real world, so at 41 weeks pregnant I was sent into a maternity ward to be induced. The next 5 days were some of the most dull of my life, as my stubborn little fae held on for all she was worth. 

On admittance, I was introduced to the world of propess induction. If you have ever been on the receiving end of this, you have my sincere condolences. I do not want to get too medical, but basically an artificial hormone is coated onto a small piece of plastic which is then inserted behind the cervix. Where, if you have a fae baby, they will promptly kick it back out, repeatedly. This, for me at least, was not a painless progress and as it turns out I was allergic to the propess, or plastic, or baby was just determined to hold the entrance shut. 5 days later she was still refusing to shift. Sent into a delivery suite with the words “one way or another she’s coming out today” still rattling in my ears, I was dragged up to a room to pass through the end stages of labor. Here, a lovely but altogether too perky young doctor forced some hideous green socks on my legs muttering about DVT while I argued that three floors wasn’t that high. In defence of more stupid questions she stuffed a nozzle of nitrous oxide into my mouth. To everyone’s dismay, it didn’t work. 

Two hours later, it was fixed, which was wonderful but not as good as the epidural. For the next 6 hours I bugged everyone on my contacts list as my fae baby still didn’t move. At midnight, to mutters of “sod this”, an injection of twice the normal amount of propess did two things: it prompted movement of the baby –  finally! …and it broke the epidural. For future reference: expedited birth, coupled with no pain relief, is not to be recommended. Also, why do they give you cardboard bowls to puke in? It’s not a good idea, mine dissolved. The second epidural was inserted by an anesthetist who I will forever refer to as a God amongst men: it not only worked, but he managed to place it in my spine while I was contracting and puking without maiming me in the process.

It still took another 7 hours for her to be in a position to push. 14 hours in one room, tied to tubes covered in I don’t know what bodily fluids, was enough for me. They said push, I pushed, and was told 5 minutes later we had made an hour’s progress and if my husband didn’t put away the catchers mitt there would be issues. So into the world, without so much as a cry but an expression that said ‘you will pay for this’, our fae baby appeared.

A guide to the EHCP

A guide to the EHCP

An Educational Health Care Plan is a legal document that outlines the requirements and entitlements of your fae for the coming academic year. It was previously known as a statement. As with the statement it is reviewed each year and any changes to requirements are updated and targets reassessed. In theory your child should make progress year on year so the review should allow for that progress to be built on. There are a lot of myths about this document, but it is very useful, and acts as evidence should the worst happen and you need to contest the educational provision or care that your child is receiving. 

First off, you as a parent CAN refer your child to be assessed for an EHCP. This does not mean that they will automatically be issued with one, but they WILL be reviewed for one. You need to have evidence (there’s that word again) to be successful: you will need to demonstrate that your child has needs above those of their peers; and that those needs are severe. 

To do this you will need to fill in the “parent’s advice form”. These can vary in outline from Trust to Trust, but typically they will ask you about your child’s likes and dislikes, their health and eating habits, and behaviour. 

Make sure you highlight if they have issues with food textures, or show any unusual hesitation around new foods. In the behaviours sections, mention if they show behaviours like stimming or sensory seeking. Do they react strongly to changes in routine? How do they react to crowds and loud noises? 

Make sure that you focus on their reactions, not how difficult that behaviour is for you to manage. 

Send copies of any supporting documents – you can use the same documentation as you used for the DLA, as well as the DLA itself. You can apply for the ECHP and the DLA concurrently. 

If your first application is unsuccessful, you can appeal. 

If you pass the first assessment, you will be called to a MAAT meeting. Here, a number of professionals that have contact with your child will attend to discuss them. Make sure that before that meeting, you take time to write notes on what you think are the most vital points to put forward beforehand, and speak up: your child is counting on you. Consider a checklist to make sure you get all the important points raised.

Whether your school/nursery supports your application or not, you may go ahead but you may find it harder. Sadly, I have heard from other parents that some schools may actually work against you especially if your child is good at masking. If you can afford a private educational psychologist assessment, that may help. Before spending the money, however, check with your Trust:  some will not accept reports written by non-NHS psychologists. It can be very frustrating, and make you feel like the deck is weighted against you, but it is worth persevering: without an EHCP, your chances of successful application to special educational provision (should that be your wish) is very low.

The process is slow, it takes months. In our Trust they only review applications every 3 months, and only go to panel to discuss whether applications will be successful every few weeks. Writing the EHCP once we were successful took another 3 months. So if you need it for the start of school, start the process as soon as possible. Read the draft as soon as you can after receiving it, the clock is ticking if there are any mistakes or things you disagree with on there.

If you’ve read this far please like, comment or share. Remember we are not alone in our struggles.

The blue parking badge

Blue badge what you don’t know and how to apply. 

The blue badge

What came as a big surprise to us was that we qualified for the blue badge and disability parking in the first place. When we were told this by our social worker we did, I admit, raise an eyebrow and ask if we were talking about the same child. Ours was, after all, the one halfway up the curtain and looking to use it as a rope to swing Tarzan-style onto the couch before launching an assault on the side board, pausing momentarily only to wonder why the TV was now in a glitching mess on the floor before swinging off the door and climbing the banisters. She was in no way physically limited in a way that seemed to merit a disabled pass. 

The social worker sighed and looked at us. She pointedly asked what would happen if we opened the door for her in the car park and didn’t immediately catch hold of her. Without hesitation we both replied, ‘she would leg it’. With a smug look the social worker said “Exactly. She’s not safe. You need to have the ability to open the door wide enough to bodily block her from escaping, and be as close as possible to a pathway so she’s as close as possible to a safe route.” The only response we had to this was: “Oh. Good point..” We asked how to apply; she shrugged and said google it, then left with a smile. 

Google it. Helpful. Sigh. Ok well let’s have a look at how to do this.

How to apply:

Go here:https://www.gov.uk/apply-blue-badge

Who can apply?

You apply for your fae if: 

•    They have a PIP or DLA (there’s that sodding form again) 

•    They have terminal illness and a ds1500 form 

•    They are under 3 and have bulky medical equipment or need equipment that is needed in the vehicle  

• And most importantly: If they are constantly a significant risk to themselves or others near vehicles, in traffic or car parks; or find it difficult or impossible to control their actions and lack awareness of the impact they could have on others

The underlined parts are the ones that will apply to most parents here. 

There are a multitude of other reasons, but these are the ones that are most likely to parents raising modern fae children. Basically: If you don’t trust your fae around traffic, you should at least consider applying for a blue badge.

So, having worked out if you are likely to qualify for the badge, you then need to apply. Please note we applied WITHOUT a DLA and were successful, so it is not necessary to have one before the other, but you can do both concurrently – if you can stomach all the forms. This one is far easier, although you will need an up-to-date photo saved on the device from which you are applying. 

The form is very straightforward, but make sure you state what they need to know. Emphasize that your fae is a risk to themselves and others: can they escape the seatbelt? Do they run the moment the door is open? Can they be trusted to stand still near the car in carparks? etc. You need to make sure you drive your point home. Assume that the person reading your application is trying to find a reason to deny your application, make it as hard as you can for them to justify doing so.

Honestly? The hardest part we had was keeping our fae still against a white background long enough to get a suitable photo. Submitting the form costs around £10 and the badge lasts 3 years. It is definitely worth it. 

If you’ve read this far please like, comment or share. Remember we are not alone in our struggles.

First meeting bingo

We have, as I expect most parents of fae children do, a lot of meetings with health care professionals and therapists. We have started to notice a pattern in the things they say upon first observing our daughter. At first this was irritating, as none of these comments were at all helpful nor insightful, so now I have turned them into a bingo game; it is the only way that I have remained calm. The words in brackets by each statement are the automatic responses that I have had to wrestle down so as not to offend people or have myself put under psychiatric observation.

·       Isn’t she active? (Really? You think I hadn’t noticed that? As she flings herself off every available piece of furniture and runs circles in the kitchen)

·       Is she always like this? (Actually no, because we knew there was an assessment today, we took her to soft play, then the park and then made her walk the ½ mile home. This is her worn out, she is usually MUCH worse)

·       I bet she sleeps well! (Look at me, I’m wearing sweatpants, t-shirt and crocs. I don’t know where my jewelry is, and all my makeup expired when she turned 1. I haven’t shaved my legs or sorted my monobrow in over a month and I only showered this morning because I thought cold water might work better than matchsticks at keeping my eyes open. Why in the name of all that’s holy do you think that she sleeps?!)

·       You must be exhausted! (Well now that you mention it… did you know you can buy bulk bags of pure caffeine powder? PSA Don’t buy bulk bags of pure caffeine powder: learn from our mistakes)

·       She’s adorable (Yes, she is. Sometimes it has been the only factor between her and the glue factory)

·       Have you tried sleeping when she does? (Oh wow how did I NEVER think of that? Wait, I did, but she never sleeps. NEVER)

·       You need to make time for yourself – you can’t pour from an empty jug. (Are you kidding with this one? I mean seriously. I would love you to show me how I have a child that never sleeps, that nurseries won’t or can’t look after {there’s another story there} and no one else I can trust her with. Also, I hate this analogy. I’m not an inanimate object. I do have an endless supply to fill this jug, its just filled with stress and bitterness that overflowed from the bucket see stress bucket)

·       She’s very tall (Again this had escaped my attention whilst buying clothing for 8-year-olds from my 4 year old . Nor was I expecting it; it came as a complete shock as I’m 5ft2. The Fey father is 6ft 4 though…)

·       She’s very happy, isn’t she? (What’s she got to be miserable about?! As far as she is concerned the whole world revolves around her.)

·       Very confident, isn’t she? (I’m not sure if this is because she doesn’t understand the very risk of death that she puts herself in by launching off the 8ft-plus platforms, or the complete blind trust she has that one of her idiot parents will always catch her. So far we have, so that blind trust has never let her down. It has thrown our backs out though).

I assure you that making it into a game is far better for your blood pressure than biting your tongue or retorting.

Don’t be shy; like, comment or share – it’s good to know we’re not alone with our struggles

A guide to the DLA

Guide to the DLA for under 16s

The Disability Living Allowance is a benefit, provided to support people who incur extra expense due to a physical or mental disability. There a 2 forms, make sure you download and fill in the correct one for the age of the applicant. For most Fae children that will be the under 16s and that is the one I am focussing on.

The form is 40 pages long. I advise not completing in one go, as you will need to focus on your child at their worst, and it is a miserable task. You will need supporting statements from professionals, so as you talk to health visitors/SALT/consultants or social workers, ask if they will be prepared to offer such things. Get names and contact details.

The rate is split into 3: low; medium; and high. There is also a separate section dedicated to mobility payments, and I will tackle that separately.

If you print the form yourself, you can take your time filling it in. If you phone and ask for it to be sent to you there is a time limit to return it – 6 weeks.

Right, onto the form.

DISCLAIMER: THIS IS BASED ON MY EXPERIENCE OF SUCCESSFULLY FILLING IN AND SUBMITTING THE SODDING THING NOTHING MORE.

There is apparently a guide booklet that the form refers to, but I have never found a copy of it.

The easy stuff. Use a BLACK pen. (Don’t ask me, that’s what it says – don’t get declined because of bureaucracy) and write in BLOCK CAPITALS (pretend you’re shouting at an internet troll throughout the whole thing)

I strongly hope that you can answer ‘no’ to question 1, despite the extra work it entails, as it means your child is expected to have a long and healthy life.

If your answer is yes, then my heart breaks for you: please email me, and we will fill the rest of the thing in together, as quickly as possible, and I hate that you are in the position to need to.

Questions 2 – 22: are reasonably straight foreword; name and nationality; has your child had any overnight stays in residentials; and if so when?

Question 23:
This is where you need the dates of any and all consultation appointments; speech therapists; autism diagnosis; ed. Psychologists; anything. If they are under any professional care write it, if you run out of room use an extra sheet, clearly stating ‘PLEASE SEE ADDITIONAL SHEET NUMBER 1’ and copy the table out and continue.

Question 24:
You may well be writing “PLEASE SEE ATTACHED LETTERS.”Clearly mark said letters as “question 24”. You will need supporting evidence to back your claim and make it go smoothly. Make sure that you keep the originals: only send copies of anything.

Question 25
Anyone and everyone who supports your child professionally e.g. health visitors, speech therapists, consultants for any conditions etc.

Questions 26 – 29: are all about your GP. You need to be registered with a GP and they should be aware of your child’s condition.

Questions 30 – 37: are about nurseries and schools
If your child is not in these settings then check “no”. If your child has any of the documents mentioned, send COPIES. (You will not get any of the paperwork back)

Question 38:
Here you can use supporting evidence from any other professional that has contact with your child. So if they are in nursery or school, and they have consistent contact with staff that would be willing to support your application, then get them to write statements. It does not have to be on the form, you can also cite letters used for q24 again. They just need to sign and date a declaration.You can print out multiple copies of page 11 if you have multiple professionals supporting your application.

Question 39: this is GDPR
You either do or do not consent to the records being shared. But if you don’t consent, then they can’t process your claim, because they can’t talk to the GPs and healthcare professionals.

So they say it’s optional consent, but if you don’t then you’ve wasted your time filling the form in.

Question 40: This is miserable. Think of your child at their worst.

Not only do you need to list any difficulty they consistently have, but also when it started and what is being done about it. Do NOT play things down.

Try to remember this section especially is about what you need THEM to know, not what YOU want to tell them. “Child runs away and I’m exhausted from chasing them” will be callously disregarded as “your problem”; whereas “Child runs away into traffic, endangering themselves and others” makes it their problem.

If your child has a tendency to jump off high objects (sensory seeker) say so. State that they need 24 hrs supervision to prevent injury or death because they act like they believe they can fly.

If you have a fae that likes to eat things they shouldn’t, like rocks (or worse, feces) the same applies.

A lot of fae do not seem to feel pain, or at least have a high tolerance, so state it – if they are non-verbal and won’t mention they broke a bone, that’s an issue.

If they run off in car parks or near roads, that too is an issue.

Continue on extra sheets if necessary, again clearly marked and redraw the table

Question 41:

Aids in this case can be anything, from PECS cards to wheel chairs; if there is a physical item needed to help your child form a specific task, list it.

Question 42:
Is their condition acute or chronic? So will it change with time?

Question 43-48: is about mobility: can your child walk; and if so how much. If your fae is like mine, it’s getting them to stop that’s the trick .

Question 49: if your Fae doesn’t need supervision outside, please tell me how!! Mine needs supervision watching television.

Questions 50-52: again pretty straightforward

Question 53:

Provide anything else you have about their movement that you think is revelant. If your child is able to move around easily and, more importantly, safely: you may be leaving this blank. If your child, however, doesn’t: you might want to emphasise key points.

Questions 54 – 70:

It’s easy to sugar coat, and to think things are not that bad. It’s only natural, and it is what gets us through as parents: we have to think like that. We don’t want to see our children as disabled and dependent. I say “we”, I am of course speaking only for myself, and I apologise if I speak out of turn, but: The idea that someone looks at my fae and sees a disabled child who will forever need allowances made for her breaks my heart. I would rather think that she will eventually learn to integrate into human society, and stop seeing other children as strange alien creatures, to be ignored or toyed with.

That said, with this question, as above, state clearly and concisely what is needed when your fae is at their worst. If you can’t remember, keep a diary for a week or so: Think of it as a rant pad; somewhere to vent your frustrations. Did you take 4 hours to settle them to sleep? Did they wake multiple times in the night? How many times did they escape the 5 point harness in the car, and have you adjusted it with a Houdini strap yet?

Can you walk your child around a supermarket? Or if you let them out the trolley, do they become too tired by aisle 3 and collapse? Or run off into the offices by the end of the grocery section?

This section is depressing: it makes you focus on all the things you don’t want to about your child, and I can appreciate how bad that makes you feel. I hated doing it, and I hate that you have to continually do it, as this form will need to filled in a number of times during their childhood. Remember that your child is more than the sum of the date and numbers you are filling in. This is not who they are, and it does not define them. My fae has the best sense of humour – she got it instead of any common sense. She also has a wicked smile and amazing ability to plan mischief, and none of that is on here. Your fae is the same.

Question 71: Autism is a developmental condition that is not often diagnosed before two years old. Take your best guess about when the difficulties started, no-one will argue with you.

Question 72: If you have other children, it may be easier for you to compare and contrast the differences in level of care needed between your fae and non-fae child. The rest of us just need to make a best guess of what is and what isn’t due to it.

I know that most non-fae children don’t have piles of cushions under the arms of every piece of furniture to catch them when they invariably launch themselves off it. Nor need a mattress on the floor, rather than a bed, because they turn it into a jungle gym. But for the rest, you may need to check the milestones against your fae’s age, to see if there are specific things that they struggle with. Apparently children who are 4 ½ should speak. Who knew?

The rest is pretty straightforward: who are you; where should they pay the money if successful; and a sheet for any extra information (bless, I think I sent a booklet with ours)

Don’t be shy; like, comment or share – it’s good to know we’re not alone with our struggles

If anyone has anything to add please comment.