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.
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.
• 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.
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.
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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
Dear Daughter, When I told you that you would be able to choose what you had for dinner as soon as you stopped shouting at daddy and me and started behaving my expectation was for you to start behaving. It was not for you to fall to the floor and wail “I’m never going to choose again!!!!” Whilst in floods of tears. Although you do get kudos for self-recognition.
Dear daughter, well done yesterday for actually telling someone when you got hurt at school that is progress. I did however mean a grown up not you non-verbal best friend who is in no position to render first aid. That’s my bad for not being specific.
Dear daughter, I know to you the back garden seems enormous but you can not get to India from it. No, not even on a bicycle, even if you carry a sparkly stick. I don’t think making daddy carry a sparkly stick and walk behind you is going to improve your odds much. Although I do admit baby tomato dragons do seem like something I would want to see as well. Oh you’re off to Australia to find a Unikitty, would you like me to pack you a lunch?
Dear daughter, you don’t like chocolate milk. You will only eat (drink) ice cream with a straw once it has warmed up and become a chocolate creamy liquid. You will only drink hot chocolate through a straw when it has cooled down to a chocolate creamy liquid. Life would be much simpler if you would drink chocolate milk….
Dear daughter,
It’s not Tuesday November 17th. It won’t be for a number of years. Screaming at me, the calendars, the Ipad, tv, my watch and anything else with a date on it will not change the date. It is out of my control and there is nothing I can do to change it. Please stop having a meltdown and telling Siri she’s wrong.
Dear Daughter,
Telling me you are going to do an upside down handstand in a swimming pool is not as impressive as you think. It means you are standing upright. In a pool this is not a death defying feat. That is not a challenge.
Dear daughter, sometimes I think that you are incredibly intelligent and you say things that are fantastically profound. Why has it taken 10 minutes for your father to convince you that you need peanuts to make peanut butter ?
Dear daughter, it’s wonderful that you want to work on phonics I love that you sound out each letter on your phonic cards. Here’s the thing though you are supposed to put the sounds together not go S. … h…… I…..P…… boat! I know you know the photo is a boat but it’s also a ship. The word is ship don’t try and persuade me that it say boat.
Dear daughter, I know you’re a cartoon baby but when your father shouts “hey look a distraction!” Do you have to stop what you’re doing and look around like a startled meerkat shouting “Where?” Every time?! It’s getting ridiculous.
Dear daughter, I don’t even know where to begin. I am aware that some people ascribe healing properties to various crystals and that quartz is widely regarded as one that can improve health.
With these healing stones at one end of the scale I suppose it makes some sort of bizarre logic that at the other there are sick pebbles. For the last few days you have been nursing an unwell rock (called Daniel) which you have informed me has leukaemia and needs to be kept in a sterile environment. As evidence of this you have pointed out Daniel’s pale colour and lathergy. Arguments that it is in fact a white rock seem to have fallen on deaf ears so out of interest how does one ‘cure’ a sick rock???
Oh a new rock this one has hypothermia wonderful.
Dear daughter, I admire your determination and enthusiasm but it doesn’t matter how fast you and what you jump off you are not going to reach escape velocity. Sorry you are still going to need a rocket to go to the moon.
Dear daughter, the storm drains are for water. The grates are big enough for water. That is why your finger got stuck. Screaming like a banshee won’t free you be grateful we have a well stocked garage because the fire service would not see this as an emergency and you would have been there a long time. You’re a muppet what are you?
Dear daughter, when I go ‘ok fine’ it’s not that you’ve convinced me of your point of view I’ve just remembered that I’m arguing with a 6 year old that the noise a pig makes is ‘neigh’, that cows go ‘oink’, chickens ‘quack’ and dogs ‘meow’. I don’t think you’re correct I just lost the will to live. You do you kid. Just stop believing you can see with your ears. That’s how you walk into the doors. Again.
Dear Daughter,
I know that you eat enough chocolate-hazelnut spread that we now buy the hazelnuts in bulk and make it ourselves to prevent bankruptcy but this is not necessarily the only qualification of being a squirrel. Granted an affinity for the for nuts is an important part of a squirrels life, as is climbing trees which you also do and chattering in an unintelligible fashion whilst being cute and dashing about…. Yeah ok you’re a squirrel.
Dear Daughter, blueberry jam by its very nature contains blueberries. Asking for your toast to have blueberry jam without blueberries is rather like the time you asked to bathe in dry water. Some things are simply not possible. Sitting there with a fork extracting blobs that you claim are blueberries is doing nothing for the texture of your food. It is however pissing me off.
Dear daughter, I don’t care how gently you use it it’s not possible to tickle someone with a hammer.
Dear daughter you fractured your arm less than a week ago. The splint is not a fashion statement. Please slow down or at least stop pretending you’re a monkey
Dear daughter you are on form today. I am so proud that when your father picked us up from swimming you greeted him with the phrase “I love you daddy, buy me things” in your most dulcet voice. That’s my girl you’re going to cost some poor sod a fortune in the future. Until then there’s Mastercard.
Dear daughter, if you walk around the kitchen with a blindfold on you are going to bump into things. It is not the oven’s fault it hasn’t moved. It’s not silly but I know someone who is….
Dear daughter, I know it’s exciting that’s it’s Christmas Eve. I get you’re very happy to be at grandmas but it’s 3.30 am I don’t want to play monopoly, you don’t know HOW to play monopoly, no one wants to play monopoly go the f**k to sleep!
Dear daughter, you have snuck off to the kitchen/dining room on your own and there is a lot of rattling noise going on. Your father asked you what you were doing. The answer “I don’t know” was not reassuring.
Dear daughter, I can’t cope. You can’t have a meltdown over been asked not to meltdown, this is a spicy logic too early in the morning for me to find my way through. Also melting down whilst chanting ‘meltdown’ over and over is a new way to do this. Fuckit I’m off to find coffee.
Dear daughter, when you latest turn at ‘I spy’ is “I spy something something hidden” I can’t help but feel you have failed to grasp the fundamentals of the game.
Dear daughter; you have shut us out of the living room, closed the shutters and have requested your elbow pads be put on. What are you doing in there ?! If I hear cry of “watch this!” Or a loud crash I’m not coming.
Dear daughter, when you take apart a jigsaw puzzle the idea is to put it together again. Not just turn to your parents and say you need ‘help’ (i.e. you want us to do it for you). To optimistically say “I’ve done one” isn’t going to be the winning answer.
Dear daughter. When I got you the fuse and water beads kits it was to improve you skills. The skills I had in mind were ‘fine motor control’ as these were highlighted in your school report as needing practise. The skills you have improved seemed to have been ‘delegating and leadership’ as every handle in the house is covered in the bloody things and you have yet to make one. Muggins here has made most of them but you have roped most adults into doing them for you. Seriously how?! When it comes to delegation you really did get someone else to write the book for you…
These things are everywhere!
Dear Daughter, some of your literal answers are fantastic: when the cashier tried to be friendly and asked “what do you want to do after school?”, the reason she looked so confused by your answer of “Clare day” was because she didn’t mean at the end of the school day (but I’m glad you like your childminder) but when you have completed your education. Stupid question for a 5 year old I agree.
Also when your father asked who Blippi was talking to on the TV he was trying to ascertain if you could recognise a firefighter. The answer “Him” was, while correct, not enlightening.
Dear daughter, I am gratified by your love of nature but making dinner time extend by half an hour because you need to watch slugs out the window is taking it too far.
Dear daughter, I know you like cake, I know you like it a lot but to tell us that it is your toy’s birthday and then insist that we have a party so you can buy him a cake is getting a bit much the fact that it worked irrelevant….we like cake too.
Dear daughter, when someone has a headache they know they have a headache. You don’t need to shh them when they cough and tell them thier head hurts. The pain lets them know this.
Dear daughter, your school spent the last hour trying to convince you to get up and dance. There was a dance instructor brought in and everything. All the other teachers were dancing, most of the other students were dancing (although I do admit some of the ones in wheelchairs were actually asleep) and the majority of attending parents were also joining in. Throughout this time you insisted that both you and I stayed perfectly still, welded to seats in a corner. So why is it the first you do when you get home is dance along along with sodding Blippi on the TV?!
Dear daughter, why is it that for your dinner we need 4 spoons? I wouldn’t mind so much but that was just for your main course which was a bowl of porridge. I would accept you needed one to eat and (maybe) one to sprinkle sugar but do you really need the other two. Also why is it that the other two can ONLY be used for porridge? I ask this as for some reason you had to eat your ice lolly with a completely different spoon…and a fork and plate. Why do you need a fork to eat an ice lolly?
Dear daughter, I’m sorry your bath is too wet but this is one of the problems that we cannot solve right now. I will endeavour to find some drier water for your next bath.
Dear daughter, when someone tells you that they don’t want to be hit, even in play – the correct response is to stop and apologise. It is not to tell them “yes you do” and continue on regardless.
Dear daughter, just because you made them doesn’t mean you can eat all 10 cupcakes in 1 sitting.
Dear daughter, we have just got your first school interim report. Why does it include the same phrases as your EHCP and MAAT reports? e.g. ‘follows her own agenda’ (wont do what she’s bloody told), ‘very helpful to peers (likes other children providing they do as they’re told), ‘will correct me and put numbers in order’ (thinks teacher is an idiot)….
Still thank you for giving your father and I a laugh
Dear daughter, while it’s lovely (and a little amazing) to hear you read along with ‘The Gruffalo’ with your father, having the fox take one look at the Gruffalo and say “yummy food” does rather change the tone of the ending….
Dear daughter, if stimming whilst sitting on your triceratops (sentences I’d never thought I’d say) is so complicated that you need to scream ‘help me mummy’ repeatedly whilst trying; may I suggest sitting on a chair like a normal human? … yeah ok not going to happen but can you at least stop bouncing on the thing?!
Dear daughter, While I’m gratified in your interest in rudimentary physics. Did you have to discover fulcrums at the breakfast table? More importantly did you have to use this new discovery to make a trebuchet and launch your toy octopus off the table with a place mat?!
Dear daughter, after we have spent 15 minutes battling, begging and cajoling you to eat the yoghurt that YOU ASKED FOR; the bubbly “thank you” when you hand back the empty pot and spoon sound an awful lot like ‘fuck you’. Also if you are wondering why the response sounded strange: “you’re welcome” is hard to say well through gritted teeth.
Dear daughter, while I am truly greatful that you have grasped the importance of dental hygiene, brushing your teeth 8 times in one hour could be deemed excessive. Also Baby shark is a shark, so they have multiple sets of teeth in their lifetime. You don’t need to brush them. Aside from this it’s man made, and I’m not convinced that toothpaste is going to be good for the metal springs….
Dear child, while I greatly appreciate your efforts to clear up your spilt porridge this morning I do understand why your father seemed less impressed. Next time try putting the bits you pick up in the bin, not his slippers, especially while he is wearing said slippers.
Dear child, while I appreciate the break from “Paw Patrol”. I am very confused by “Hey Duggee” why does the octopus have to become a fish so it can breathe underwater? Also what is the mechanism by which this is achieved??
Dear child, It’s Christmas Eve do we really have to listen to the Halloween baby shark songs still. You’ve heard them on repeat every day since the beginning of OCTOBER, please can we move on? ….no. sigh ok, everyone: gather the marigolds and make a lei, light the candles on the this day….
Dear Child, you get a pass on a lot of the social mores and rules of being a human. You reallly, REALLY do; I have given up expecting you to talk or to not throw yourself of high places or sleep for more than 2 hours or leaving your bedding in your bedroom, but there is a line. You do need to eat and you do need to wear clothes. These two events need to happen simultaneously in most events cases.
Granted not wearing clothes whilst eating would save on the washing but what would save on the washing more would be if you didn’t keep submerging your t-shirts in your water table in an attempt to wash the water off when you get them wet when playing. Seriously what’s with that?!
Dear child, While I am relieved that you have come back from the park having (somehow) managed to make friends without being about to speak. The fact that said friends are trying to coax you onto the roundabout with rocks like they would use food to coax a frightened animal is daft. The fact that is worked is ridiculous.
Dear child, Yesterday we went to a not inconsiderable effort to get your paddling pool inflated and ready to use today. So why are you trying to sit in your water table I mean really? REALLY?!
Dear child, When we got you a water table to play with it was with the idea that you used the toys with your HANDS and that you poured the water back into the table. This idea was reinforced by the pictures on the box of other children doing exactly this. So why do you insist in standing in it and pouring the water on your feet?
Also the consequence of this will be wet feet. It always has been and while you are on Earth always will be. Yes the bottoms of your leggings get wet, taking your t-shirt off wont solve this. Stop running around the garden naked!!!!!
Dear child we have been on the beach an hour. You haven’t looked at the water once. We can still see the car. You have spent the last 20 Min trying to shovel all the pebbles from the top of the shore to the bottom It is rocks all the way down. I’m bored and I have a degree in marine biology I’m used to standing around on beaches can we go yet?!
Dear child, Under the table where you sit there is a plastic table cloth. It has always been there, I know it has always been there but it has, after three years worn out. I realise now that I should have consulted you before replacing it with another plastic table cloth. If you would give the new one a chance I am sure that you will be just as close to it as the old one, please stop trying to throw it out; it will not bring the original one back and the survival of the carpet requires it. Also stop poking it and dragging me down so that my face is an inch away from it I’m aware it has changed.
Dear toddler, I know that we complained that the hour change is a problem but that didn’t mean that we wanted you to stay up for three hours in the small hours this morning to make sure that our body clocks are well and truly scuppered by the time morning came. Seriously go the **** to sleep
Dear toddler, we have been the only ones that have been in any of the five playground and four parks you have taken us to (twice) today. You are the reason I have spent a proportion of your fathers’ bonus on even more wet weather clothing. Have you considered expending some of your energy in learning to talk instead of running round like a lunatic? I didn’t think so sigh more wellies it is then….
Dear toddler, while I normally encourage your creativity, being woken up at 1am because half your pillow fort fell off your bed will never be met with the enthusiasm you’re used too. Also when you decide to rebuild the bloody fort you can wait until morning to show me. Morning does not mean 3.30 am GO THE F**K TO SLEEP.
Dear toddler, I know your were happy to be in a cool room but seriously putting you to bed should not register as a 20 minute ‘aerobic workout’ on my Fitbit….
Dear Netflix, I have a daughter who is fixated on Green Eggs and Ham. We have watched EVERY SINGLE ONE more times than I can count. We can quote every episode, sing the theme tune and name every character. We can give you the backstory to everyone in the show. You don’t need to send me an email asking me if we liked it and another sodding email ‘reminding’ us to finish the series. We have so many times.
Dear toddler while the art work you produced was (obviously) a composition that rivals Dali or Picasso; did you have to, in the process of making it, also paint; yourself, the cat, the grass and me? While most of this doesn’t matter or can be cleaned the cat is walking around a day later still wondering why everything smells of paint admittedly she should’ve had learnt a lesson after the first time this happened although this was 8 years ago….
Dear toddler, you are growing too fast. Stop it. Or learn to talk that would work too.
Dear toddler, happy birthday. But did you have to celebrate becoming 2 by getting your foot stuck in your pjs and demanding help out of the at 1am?!?!
Dear baby, you’re sick, you have a cold. I know this because your eyes are swollen and your nose blocked. So why the hell haven’t you noticed??! For pity’s sake slow down and give yourself a chance to mend. That doesn’t mean try to launch yourself off the arm of the couch.
Dear baby I’m sorry you think I’m such an arsehole for taking your porridge away but it was on the floor and you were sharing it with the cat.
Dear baby, when you’re napping before 8am maybe consider getting up later than 4….
Dear baby, if you remove your blanket, your shoe and your sock you will have a cold foot. Complaining that you have a cold foot while you are in your car seat and the car is moving wont help there is nothing I can do at that point.
Dear fire alarm, why is it that whenever my husband is making omelettes you decided to wailing like a cat with its tail caught in a door but when I actually set fire to the frying pan, jump up and down and hit it with a spatula like some sort of demented sim you make not a sound?
Dear baby, I am concerned that you have a cold, but I’m more concerned that it seems to have turned you into Gollum ….
Dear baby, I know you like beating your personal bests but really 7 changes of clothes in one day is a record I could do without!
Dear baby, hairbrushes should be used on hair, toothbrushes on teeth, doing it the other way round is why you’re having a hard time.
Dear baby, you’re tired. The reason you’re tired is you got up at 10 to 6 this morning and then whinged at me until you were allowed to go downstairs and play with your toys. Stop whining that you’re tired.
Dear baby, your father thinks you should have a cute giggle not a Demonic cackle. I think he forgot who he married….
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When our daughter was first diagnosed with autism, I was given a piece of paper with a list of barely-legible links that had been cut and pasted off the internet and were all over a line long.
None of these links actually stated what they were to, and only half of them worked. No electronic copy was ever issued, so one mistake in painstakingly typing out these endless lines would result in a 404 error. That’s assuming I had time to go looking in the first place. I had essentially been given a sheet of A4, a pat on the head and sent out the door with my nonverbal child and no support.
Being a parent is hard enough, being a parent to a fae child is whole new ball game; there are rules but no one tells you what they are and if you are lucky you stumble into some on the way.
There are people who can help (with links where possible)
(Special educational needs and disabilities information advice and support services) SENDIASS is like a one stop shop for information, they can advocate on your behalf or signpost you to where you need to go next for your fae. They can coordinate the MAAT teams for your or just listen when you about to break down. In any event they are worth knowing about.
Short break teams These you will need to google for your local council; they work within the local authority social worker dept. and once you have your fae officially diagnosed they can help you find short term support and placements for you and your family.
Health visitor If your fae is under 5, they are still entitled to a health visitor and ours was amazing; she pointed us in the direction of DLA funding and carer’s allowance, and liaised with the social worker team to bring in SENDIASS and short breaks. I wouldn’t have survived moving house without ours. (Oh point of reference don’t relocate from one end of the country to the other if you can avoid it with a young fae – it’s a nightmare).
SALT Speech and language teams – you will need a referral for these but if your fae is not talking (I mean not a word) by age 2 push your GP/health visitor for a referral.
Portage Again you will need a referral but portage can support your fae’s development and help you find and access other services, they can also help you apply for and be successful with obtaining places for schools that meet the needs of your fae. They can support applications for EHCPs.
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Autistic meltdown: when an autistic person is struggling to process too much information at one time leading to feelings of high anxiety and stress. Often linked to times where they have had to mask or been flooded with sensory input. They will lose complete control of their behaviour and it is often mistaken for a tantrum. Can be expressed verbally or physically.
Blue badge: A parking permit that allows access to disabled and priory bays in most car parks and also reduces parking restrictions.
Carer’s allowance: a benefit you are entitled to if your fae receives the mid/highest levels of DLA (see below) and you meet specific criteria with regards to earnings and care. you will need to apply for it
DLA: Disability Living Allowance. A benefit that your fae is/may be entitled too. You can apply to central government for it once you have a formal diagnosis. The form is over 20 pages long and is generally considered to be agony to fill in. You will need supporting statements from professionals. I am writing a separate blog on this. Watch this space.
Echolalia: continuousnonsensical repetition of sound or a word. Sometimes referring to as audible stimming.
EHCP: Education Health Care Plan. A vital (and legally binding) document that states what provision needs to be in place for your child. It is vital, if you are considering a special school placement, that your child has an EHCP, and you can self refer to your LA to have assessment done to see if your fae meets the criteria to have one. You will need evidence. Keep every document you have stating the needs of your child.
MAAT: Multi-agency assessment team. When undergoing diagnosis you will find that a lot of people have input into your fae’s final diagnosis., they range from health visitors and GP’s to speech therapists and nursery workers. When they get all these people together to talk it’s call a MAAT meeting.
Masking: The trait of neurodivergent to hide or suppress behaviours when around neurotypical groups due to wanting to fit it. It can be exhausting and lead to autistic meltdown as soon as the person is removed from the situation they feel they needed to mask in.
LA: Local authority, the council for the area that you live that is responsible for providing education and health services to your family.
PDA: Pathological Demand Avoidance, a subset of conditions linked to ASD which can lead to conflict.
PPD: Post partem depression, depression a significant number of mothers feel after giving birth, normally but not always linked to hormone changes
PORTAGE: is a support model for ASD children and their families, it can also be used to help LAs assess children and direct parents to the most appropriate educational pathway for their child.
SENDIASS: Special educational needs and disabilities information and support service. These people know everything there is to know about guiding you through MAAT meetings, DLAs, and challenging decisions. If you are struggling to get anywhere then google you local SENDIASS and they will be able to help you.
Sensory Seeking / sensory avoidant being either over or under stimulated by sensory input, AuDHD/ neurodivergence can make someone both sensory seeking and sensory avoidant. Fun isn’t it?
Stimming / Stim repetitive movement / noise making that provides sensory feedback to a sensory seeking child. The Dictionary defines it as as:
the repetitive performance of certain physical movements or vocalizations, as a form of behaviour by persons with autism or other neurodevelopmental conditions; self-stimulation. This behaviour is thought to serve a variety of functions, such as calming and expression of feelings.”stimming was part of her coping mechanism”
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During the Victorian times, and before it was often thought that fairies stole young children and replaced them with their own fairy children. These fairy children, although identical in appearance to the original child often behaved in a way that was considered inappropriate. There was a range of these behaviours that scaled from slightly quirky in a way that would often result in a child being labelled troubled and in need of discipline; to them being confined to asylums or bedlam.
These days we know that a lot of these children were not insane or imbeciles as they were labelled and they were not troubled. A lot were in fact neuro-divergent. They were definitely not children of the fairies. My daughter is autistic.
She was when I started this blog 4, she didn’t talk but can count. She loves climbing and finding new and interesting ways to try to launch herself to her death. My full-time job is preventing these attempts from coming to fruition.
I have begun to document our adventures here, some of it because it’s funny, some because it’s useful information that I do not want to forget. Mostly because I need somewhere to vent my frustrations before I go insane.
Don’t be shy; like, comment or share – it’s good to know we’re not alone with our struggles
Raising the Modern Fae 