A Final Thank you

It’s been three years since a tiny Tilly crawled through the doors of her nursery. She was 22 months old and was just starting to walk with the help of a lot of physio. I wasn’t ready to let her go, it had been gently suggested by the portage (play therapy) coordinator that it would do us both good. I had never wanted to send her to a nursery, she was going to go to the local preschool two minutes away, not five miles away. It was incredibly difficult to let her go, I felt I had failed as a mother, I wasn’t enough for her. I couldn’t give her enough to be at her best. I had a two month old at home and was a newly single mother, I felt like I had let her down entirely. Here she is at the age she went to nursery:
But from day one, the staff at her nursery made me realise something very important. I hadn’t let her down, not even a bit. I had given her the very best chance by putting her needs before my wants. She needed to go to a nursery who could give her intensive one on one interaction and intervention from day one. She needed to go to a nursery that nurtured her and supported me to be the very best mother I could be to her. Not only that, I needed to take some of the pressure off, let them do some of her daily therapies and let myself have time away from being her carer as well as her mum. 
Every single step of the way, from applying for DLA and fighting for referrals, EHCPs and equipment, they have been there to hold my hand. They’ve been an emotional crutch for me during the very hardest times. No one batted an eyelid when I brought Tilly back into nursery after a huge regression caused by a bug during the summer of 2015, they didn’t judge me for leaving my newly unable to walk three year old in their care for a few hours, I needed those few hours away from her to give myself space to sob and regroup, seeing her that way was devastating, They just focused on helping me to help her to walk again. This happened a few times. After her week long stay in hospital having constant seizures in January 2016, she was back to nursery shortly after. Again they helped her refind her strength. 

 When it became time to start her EHCP, they did it all, guided me through the bits I needed to do and listened to everything I wanted and needed for Tilly. It’s not often you’re listened to (really and truly listened to) as a SEND parent, I have been very spoilt with almost daily hand overs and chats about her progress and discussions on what we could all do to help Tilly are the norm. Nothing is ever too much. It will be a hard transition for me into school, but not for Tilly, I know she’s been given the very best handover possible. 
Child care practioners (is that the official term?) are such undervalued people, they love and nurture our babies into little people and that should be applauded and appreciated so much more than it is. 
I guess what I want to say is simply thank you
Thank you all for loving my children.
Thank you all for giving them your absolute best every single day. 
Thank you for listening to me when I needed to be listened to and for guiding me when I needed to be guided. 
Thank you for never giving up on Tilly. You have always believed she will achieve everything she wants to. Repeating the same tasks with her every single day for months and years to try and get them to go in… not even I can manage such dedication. 
Thank you for being my safe haven over the last three years. The three hardest years of my life. Where would I be without you?
Thank you all so very much. Don’t be surprised if I bolt out of the door on Friday after Tilly’s last ever day with you. I will be running off to sob in the car as I’m not a big fan of PDAs (thanks for making me cry so many times in TAC meetings ๐Ÿ˜‚) Seems silly really as I’ll be back on Monday with Arlo…

But when you’re on a journey as unknown as ours with a child as rare as Tilly… finding a place that gets her, accepts her and truly loves her for who she is… well, it’s probably almost as rare as she is. 

I don’t feel ready for Tilly to start school next week but I know she’s going as the very best version of herself and with the bar set very high. If her new school come up short to the level of care she’s received at nursery, they’ll find me marching up there to raise hell. I know what we deserve now and anything less won’t be good enough. 

Thank you. โค

Back Off Our Hospitalย 

I wasn’t shocked at all today to read that the hospital, Queen Alexandra in Portsmouth, where my children were born and where Tilly has been cared for many times over the last five years was slammed by the Care Quality Commission in their latest report. 
I wasn’t shocked at all… No.  I was furious. After all, this is the hospital that saved my life when I almost died during childbirth. This is the hospital that safely brought Arlo into the world. The place where Tilly was blue lighted at 3am after an hour long seizure. Where we’ve stayed many many nights. Where we go for a billion appointments a year. 


I was furious because I remember the midwife who promised me I’d be okay as I was wheeled to theatre after haemorrhaging and the obstetrician who saved me that day. I remember the paramedics who made it bearable to sit in an ambulance whilst being blue lighted at 3am thirty minutes away (they closed my local hospital) willing my child to stay conscious, the nurses who held my hand as I hopelessly watched my child locked into yet another seizure night after night. The same nurses who always find us a side room because Tilly can’t cope on a busy ward. Who make me toast after a long night and do whatever they can to make such a horrible experience that tiny bit more bearable. Not forgetting the doctors and support staff. 


I was furious because I watch the staff at our hospital working themselves into the ground, under staffed and over stretched but always giving us their best. I’ve never felt like anything was too much. They’ve always had time to reassure and double check. I watch them and I get so angry that they’re slated when they try so hard to make things better for us. 


So this is my little shout out to the wonderful staff at QA. Thank you for all that you do. Thank you for taking such wonderful care of my family and thank you for keeping on even in these difficult times. You make a huge difference to families like mine and you are so very appreciated. Thank you. A million times over. 

And a giant middle finger (just for good measure) to our government who have created such impossible working conditions for the amazing NHS staff. 

Separation Anxiety – How Exciting!

Weird thing to say hey ? Tilly is going through a separation anxiety phase and if I’m honest, I’m absolutely bloody thrilled about it. At four years and nine months old, my biggest baby has started howling if I leave her at bedtime and it’s a little bit brilliant… 


If you follow me on Facebook or instagram you’ll know we had a reallly magical moment last week when Tilly let me sleep next to her for the first time in four years. It was so wonderful that I cried. 
See, since about twelve months old, Tilly hasn’t given much of a shit about me. The baby that was strapped to my chest all day and slept in my arms all night all of a sudden didn’t want me anywhere near her. Ive had to practicality throw her and run away at bedtimes as she hated me being in the room with her. Every mothering instinct in my body wanted to sleep next to my baby and soothe her to sleep, but she didn’t want me anymore. This continued for the next four years. I cannot tell you how difficult it has been to settle her to sleep in hospital, I’ve had to hide in bathrooms and pray she’d go off many many times. Not being able to settle or soothe my child to sleep in unfamiliar and strange places was hard. Really hard. 

And yet here I am. Sat on the end of my almost five year olds bed watching her drift off to sleep. It’s taken me two weeks to realise it’s me she wants, quite possibly the last thing I’d ever think of. I darent leave the room as she will scream the house down if I do…. and you know what? It’s bloody magical. I’ve seen her fall asleep a handful of times in the last four years and all of those occasions were due to masses of epilepsy drugs, one general anaesthetic (hell) and one exhausting early morning curled up together in the resus room of the child’s Ward after a night of seizures. Never very happy times. 
This is different. This time she wants me here. She finally finds comfort from my presence and wants me to be in her space even if I do keep spoiling it by sobbing (happy tears) loudly. 
This summer with Tilly has been wonderful. After a springtime of non stop hospital stays, violence, EEGs, steroids and desperate phone calls to doctors who couldn’t help me… it’s simply magical to finally be what my child needs. I finally feel like she knows I’m her mama again. 




Online Friends are NOT Real Friends.

Social media has picked up massively in the last decade. You can message, tweet, snap, DM or scroll through your friends various forms of social media at any hour of the day. Friendship is always there, right in your pocket, ready to talk to you. 
When I fell pregnant with Tilly back in 2012 I was massively lonely. My friends were still at universities all over the country and I was the only pregnant one. I was desperately lonely and had no idea about pregnancy or babies. I remember googling “how to make friends when you have a baby” in those first few months and eventually I struck gold and found the Bounty forum for those due in October 2012. I had to send a friend request on Facebook and then I’d be added to a secret group. It was very exciting. 
That group became my lifeline. I was obsessed. I would ask questions all day, every day and pour every last part of my thoughts into this group of 300ish women. I wasn’t alone anymore. I had found somewhere to belong. The group had its difficulties with a few less than delightful women who were needlessly unkind or seeming to try and scam others. After a year or so things settled down and now, five years later, the ladies in my first due in group are some of my closest friends in the world. I’ve been to weddings and hen dos in Warwickshire, Brighton and The New Forest, various birthday parties and meet ups as far as Cardiff, Manchester and London. I am also in a group from when I was pregnant with Arlo and have lifelong friends from there too. 

I have cried rivers of tears for babies lost by women I have never met and I have confided my darkest fears to women I have never met. I’ve even been to the funeral of a woman I have never met. I drove for seven hours to be there and it never even crossed my mind that I hadn’t met her. She was my friend and the grief and loss I felt and still feel was very real. Someone I spoke to most days… of course she was my friend. 
So imagine my horror when I was told that my online friends were not real. They felt and looked pretty real to me. 
I’ve made a lot of my “IRL” friends online. Only today I went for lunch with a friend I met after she messaged my blog page ๐Ÿ˜. I’ve even been a bridesmaid after befriending another friend on instagram ๐Ÿ˜‚. I’m secretly very shy so getting to know people online first helps me to be less of a socially awkward lemon ๐Ÿ‹ 

So! I asked The Girl Tribe, the Mama Unexpected group (yes you can join Click here ) about online friendships and their feelings on them so here’s a few things I’ve learnt. 
As a whole, online friendships are a positive. Most said they tell their online friends things they wouldn’t discuss with their other friends. 

Deepest darkest secrets are told to the people in my pocket… I love you all! 

Others told me that (like me) online friends made them feel less lonely: 

Online friends have been a comfort blanket for me at times when the world has felt incredibly lonely. 

And many told me that they felt that their online friends had supported them through difficult times and even went so far as to say that their online friends had saved their lives. 
Amazing hey? 
There were a few darker stories, it’s easy to be a bully via a keyboard after all and kind gestures sometimes back fire. I would advise always being cautious. 
The main thing I learnt from asking about online friendships was this: 
Online Friends ARE Real friends. 


I wouldn’t be the mother I am today if it wasn’t for the “people in my pocket” 
Thank you โค

(strong girls club tee is from the epic Muthahood)

My Mum – The Lion

Today is a very special day in my family. Today the leader of the pack, my wonderful mum, turns 50. 

 
When my brother and I were growing up, life wasn’t easy for my mum. My dad was away for long deployments and we lived 200 miles away from family down in Plymouth for the first two years of my life, moving back when my brother was a few weeks old. Life wasn’t easy, mum would count the meals in the freezer and go without meals herself to make sure my brother and I were fed. 
Eventually we moved to the house my great great grandad built on the seafront and my brother and I had the very best childhood. Full of adventures, running in and out of the sea and always surrounded by the love of our mum. From a very young age, I always knew my mum loved us unconditionally. There isn’t a thing she would not do for her family, friends and even strangers she’s never met. She is a selfless, generous and loving woman. Exactly the type of woman I hope to be. 


My teenage years were not easy. Being in an abusive relationship aged seventeen to nineteen turned me into a different person. I was not nice, I was deceitful and I lied a lot. I did things I am not proud of but still my mum was there by my side the entire time. Watching over me and caring me for at my very lowest, nursing me back to health. When the day were at their darkest and I didn’t want to be around anymore, she pulled me out of the darkness and kept me going. I owe her my life. 

Countless times, my mum has dropped everything and charged across the country to be at my side. When my friend died at university she was on the next train to Manchester, packed my room up and drove me home the next day. When my husband left me heavily pregnant, she hopped off her boat down in Devon and came straight back. No hesistation, no resentment at ruining her holiday. She came straight back, scooped me and Tilly up and took care of us at her house for a week or so. In times of crisis, I know my mum is coming and that she will be there holding my hand long after the storm has passed. 

When I fell pregnant with Tilly very soon into a new relationship, my parents did all that they could to help us. Gave us both jobs, a house and all the support we could’ve needed. Nowadays they pay for Tilly’s extra nursery hours and private therapists, nothing is too much. Last year they sold their lovely apartment to buy and renovate a house that is more suitable for Tilly. I would struggle massively as my delightful husband doesn’t contribute financially to his children’s upbringing at all, but with the help and advice of my parents, we get by and my children want for nothing. It is a blessing.
It’s not all about the material things though of course. My mum is the other parent to my children. She is the best nana in the world. Never too busy to stop everything and play. Forever taking them on adventures and giving them the same love I grew up with. My children are very lucky to have a nana who is so hands on and so much fun. They love her and their grandad so very much. Arlo and grandad have their own dinosaur egg (a rock) in the garden that hatches a new dinosaur every time he goes over there – my children love being at their house, there’s always something fun to do. During the hardest times with Tilly, I am lucky to have my mum by my side to keep on fighting and help me to keep going when I’m tired.


My mum is a lion. She does not back down. I can only fight so hard and so long for Tilly because my mum will be there next to me, guns blazing, ready to take anyone on who dares to say no.  

The lion also has a kind side, my mum would do anything for anyone. Christmas at mums house usually involves a few extra guests that had nowhere else to go. There’s always room at the table. 

I hope to be the same sort of mum to my children, I hope my children feel the same unconditional love and support that I have grown up surrounded by thanks to my mum. I hope they know I’ll get on that train too and be back in a crisis. I hope they know I’m behind them 100% and feel the same confidence to follow their dreams as I do, thanks to my mum for always believing I could do whatever I put my mind to. There’s no way I’d be starting uni next month without my mum believing that I could. 
Happy Birthday Mum. I hope you know just how much we love you. 

Dear Health Care Professionals

I wrote this little letter a year ago and just found it again over on SWAN UK so thought I’d reshare:
Dear Health care professionals,
We have a few appointments coming up next month so I thought I’d write you an open letter.

Firstly, thank you. Thank you for saving my life when Tilly was born. Thank you for looking after my baby and working your hardest to give her the very best care. I know it’s not your fault that tight budgets mean I have had to fight every single step of the way. Thank you for doing your best despite working in such difficult times. I owe you a debt I will never be able to repay.

But please remember that when you are talking about your patient, commenting that she is fascinating, calling her a mysterious enigma and throwing out possible, soul destroying conditions you think she might have … she is my child. Not her symptoms and not the misfiring electrical impulses in her brain. She is Tilly. She is my child. She is the daughter I dreamt about my whole life, she is half of my heart and there aren’t any lengths I will not go to for her.


When you diagnose things or point out what is “wrong” you are talking about my child. Casually dropping potential conditions into conversation or talking about epilepsy so matter of factly … it hurts. Yes, she has epilepsy, yes she may have an excitingly mysterious syndrome … but you cannot begin to imagine how hard those things are to hear about or deal with as a parent. Not just in the present, but also all the ifs and buts of the future and all of the how and whys of the past.

Please, health care professionals, please remember that your patient is my child. My Tilly.


More than that. She is a person, her own person. With her own wants and needs. She loves Mr Tumble, listening to you sing and clap and sleeps stroking the ears of Ewan the sheep. She loves hands, sit and rub her hands and she will love you forever. She likes baths and swimming in the sea and being swung as high as possible on the swings at the park. She has the most infectious laugh in the world and wiggles her little bum and flaps her arms when she walks. She eats. BOY does she eat, it’s impressive how much such a small child can eat. She is a person. Not your 2pm appointment, not a statistic or a NHS number or a box to tick. A person, a beautiful, glorious, life changing wonderful person. She is Tilly, not just your patient.

No More Gingers

Growing up, the one thing I always wanted to be was a mum. I wanted four children, girl, boy, boy, girl. I’d drive a big people carrier or a minibus because we’d have two big dogs too. Life would be chaotic and loud and full to the brim with love. We’d go on adventures in the woods and on the beaches and we’d have a big tent with bedrooms. Much of this was modelled on my own childhood, I grew up next door to my best friend and her family, we were one big happy family and my fondest memories involve climbing up big hills and belly laughing lying down in tents blown almost horizontal in torrential rain. It was a great childhood. I wanted my own children to have the same noisy, lovely upbringing. 
But things don’t always end up as planned. I can’t have any more children. Two will be my lot. I had my last child aged just 24. It’s been something I’ve always struggled to come to terms with. 

Having four children four and under for the night/morning this weekend showed me just how chaotically lovely it is to have a house full of children. Having all those lovely little faces around my dining table for mealtimes was lovely. A good excuse for more sleepovers I reckon. 
I can’t have more children for a few reasons, mainly because I don’t know what is wrong with Tilly. She is undiagnosed and so I don’t know what her life will look like long term. I don’t know if her condition will cause her to regress again, I don’t know if it will kill her and I don’t know if it would be worse for a boy. I don’t know if I caused it, so I don’t know if I would pass the same condition onto future children.
 Tilly’s delays are difficulties are profound and challenging, I know I could not cope with another child with the same. 
I can’t have a baby because Tilly is so violent that it would not be safe. 
I can’t have a baby because I can’t stretch myself far enough. Tilly needs as much, if not more, care than a newborn and Arlo is a diva in his own right. I don’t think I could split myself into anymore parts. 
It’s a difficult one to think about. The thought of never feeling another baby rolling around inside of me and never breastfeeding again is hard. 
Bizarrely, I work with newborns and that doesn’t phase me in the slightest, it’s more watching the way sibling interact or how Arlo plays with other children that gets me. Tilly is trying her absolute best to be play and be gentle at the moment but there’s still a very long way to go. I wish Arlo would have the same as I had with my brother, a sidekick, sparring partner and confidante. 
So yes, unless Tilly’s condition is discovered and declared de novo (a genetic one off) and her care needs and violence dramatically decrease, there will be no more gingers. Unless I get a cat ๐Ÿฑ 

Hopefully we will have a childhood full of sleepover and friends instead โค

Blackberry Picking and Nervous Shits – An Unexpected Tale.ย 

Hold tight. Here we go. 
I stupidly set myself a challenge this summer to be #brave ๐Ÿ™„ and carpe the diem! No more hiding in the safe confines of the house or the local park. The Unexpected family are on a stupid mission to break down the invisible barriers of single parenting a volatile SEN child and her arsehole brother. So we began. 
Today it has been chucking it down here in sunny Costa Del Gosport. Seeing as Tilly kindly broke the TiVo box and I “spring cleaned” (read as drank a glass of wine and threw out a lot of stuff) all the good DVDs… the paw patrol DVD on loop was wearing thin by the middle of the morning. I probably would’ve called it a PJ day but it’s likely I would’ve chucked the TV or a child out of the window if I had to ponder why there’s a town somewhere where they rely on a child and his puppies to save them from ridiculous events every day. Where are Ryder’s parents? Are they dead? Why hasn’t anyone commented on the mayor being unstable…? Is it all symbolic of the afterlife? Why is there only one girl pup? The questions go on and on and on. So PJ day was cancelled. Plus I had this stupid #brave challenge to do. Ugh. 
Much screaming, sweating, shouting and wrestling later, all three small gingers were loaded up into the car ready to take the pup for a walk. We got there, I managed to unload and rebuilt the massive buggy complete with stupid buggy board and massive raincover and loaded children onto it and off we went. Ten paces down the path into the woods I realised my first mistake. I was wearing sliders. Bloody sliders. In wet and windy woods. The kids were wrapped up in their coats and wellies and there I was, in just a dress and sliders, I had forgotten to pack myself anything practical. The ultimate symbol of motherhood that. We will pretend it was my self sacrifice and not my utter lack of preparation that caused this. 
For the next half an hour or so, all was well. Arlo enjoyed every puddle, Tilly enjoyed sitting in her chariot and the dog enjoyed his ball. Off we wandered into the woods and up the hill. Lovely. A few ankle deep puddles, but as it turned out, sliders are great for the woods, my feet were dry again in minutes. Score. 

It was on the way back that disaster struck. About five minutes from the car was a little bridge over a river/duck pond with a little island about four metres from the path. Determined to tire the dog out, I threw the ball into the pond for a few minutes whilst he dove in and brought it back. Then for some unknown reason, the stupid pea brain decided to get up onto the little island and then decided he was stuck. Here he is: 

Cue chaos. One dog woofing and crying. One Arlo attempting to drown himself in the pond and one Tilly joining in with the noise for good measure. A crowd formed, well meaning dog walkers offered suggestions on how to get the stupid dog to remember he could indeed swim and hop off the little island and come back. Oh no. The dog continued to cry and bark. And then it happened. Right in front of a whole crowd of people, my darling dog, the one I take loving pictures of and post all over instagram, projectile shat ALL OVER the little island. Ever seen the exorcist? Yeah. Like that. Mortified. “Bless him he must be nervous” one dog walker kindly remarked. Yeah, nervous I was going to drop kick him into the swans and let them eat him. ๐Ÿ˜‘
 He continued his one dog drama show for another ten minutes, whilst I calculated whether or not I liked him enough to wade out and get the idiot ( I don’t, that was never happening) until finally another dog stole his ball and he jumped in like it was no bother at all. Little bastard. He trotted off up the path, oblivious to the thirty minute shit show hed just staged. Bastard. 
Things improved, I introduced Arlo to the art of blackberry picking “red ones make you poo, low ones taste like doggy wee” was our mantra and now I will be spending the next fortnight trying to get blackberry stains out of Tilly’s clothes ๐Ÿ˜ฃ.

Still, week one of #brave challenge done and no one died so… job done โœ… 

5 Things I Really Need To Get Over (And Maybe You Do Too?)

So, I’ve been thinking a lot lately. College is over and I have a LOT more free time. I don’t do free time. I don’t like it. I obsess over things. You might have noticed I’m having a serious bout of writers block and spend a lot of time sulking that I don’t have anything interesting to say anymore. 
Time to calm my tits. ๐Ÿ‰ ๐Ÿ‰. So here are ten things I really do need to consider chilling the f out about: 

1.

Comparing my children to others. This one I’ve mastered with Tilly. She is one of a kind and dances to her own beat. Arlo is a neurotypical (fancy word for does not have special educational needs) and I’m getting a bit too obsessed about what other children his age are upto. He never does as he’s told, screams blue murder when he doesn’t get his own way and is generally a bit of a tyrannical arsehole. Why is every other kid in the cafe sat eating nicely whilst mine puts on a tragic performance worthy of the West End about sodding chicken nuggets. I’ve simply decided to accept my child is an arsehole and will just eat his nuggets for him in future, ungrateful swine. 
2.
Every now and again I go through a real slump in my self image. My current hang ups are that I don’t like any of my clothes, my hair is boring, my make up skillz are sub par and I have no clue on accessorising. I’m feeling a bit frumpy and boring and really need to stop foaming at the mouth with jealousy at all the fabulous embroidered blouses and pompoms I’m seeing all over instagram. Time to get over it. I’m built like a Viking, if I wore an embroidered blouse, instagram models would glamp under me. 

3. 
Another whingefest of mine at the moment is that everyone else seems to have their shit together whilst I’m winging it precariously through life wondering when everyone is going to cotton onto me not being a proper grown up. I know full well that the rest of you are secret giant children too… but still I grump on. All of my friends are getting married and engaged and have lovely sofas… I can’t persuade my husband to divorce me and my sofa smells of dog and wee.
4.
Bloody instagram. It started as a joke, I wanted free clothes and to take wanky flat lay photos… now I’m obsessed with instagram mum bloggers and don’t understand why my instagram following is so small. Who doesn’t love looking at pictures of my stupid dog and my brunch? I really do need to get over my instagram hump. I bleat on all the time about how stupid it is to believe the instaperfect glow… but I really need a fancy wall to pose in front of and I really need free clothes from Zara. 
5. 
This is probably the biggest one. I need to get over my FOMO fear of missing out. I sit on my smelly dog and wee soaked sofa in my pyjamas and look through my Facebook and bloody instagram and see all these lovely weddings and dinners and parties. FOMO is in full force. The most stupid part of that is that I LOVE sitting on my smelly sofa in my pjs watching Netflix. 

So there you have it, five things I really do need to build a bridge and get over. Have a word. ๐Ÿ‰. 

I Dont Know How You Do It ย …and Other Annoying Things to Say

I’ve had many many well meant but infuriating things said to me over the last almost five years. So here is my own personal list of things you should never say to the parents of a special child (or maybe just me because I’m a grumpy sod)
1) “I don’t know how you do it”
Over and over and over again. Enough. We do it because we love our children. It is what any parent would do. We do it because we HAVE to and no other bugger will. It’s not a path we chose, it’s the one we were given and it’s our normal. We do it because of love. I love my child, that’s how. 
2) “You’ve got your hands full!” 
Yep, yep I do. Two children, two hands. Stop saying it. I like to let go when people say this and shout “no look! Hands free! I can still Snapchat!”
3) “I’m sure she’ll catch up” 
No matter how well meaning you are, don’t say it. It takes a LOT of heartache to come to terms with the fact your child isn’t going to catch up. Comparing them to “typical” children the same age is a very painful experience. Alternatively, don’t ever put a limit on them. I heard of a doctor once telling a fellow SWAN parent that her son had boarded the train but would never get to the station. Awful. Our children will get to their own station and it will be a bloody marvellous station, bet the coffee there will be excellent. 
4) “Special parents for special children” 
I’ve already had my say on this one. This is NOT true. Special children make special parents. Not the other way round. 
5) “Well she looks normal”
Oh yeah? grab me an EEG machine and lets have a wee look inside her brain then eh. Stop it. 
6) “It’s such a shame”. 
I kid you not, I hear this a lot. No it’s not a shame. My child is joyfully happy, she doesn’t know any different and she brings so much to everyone she meets. Where’s the shame in that?
7) “Is it life limiting” 
Erm, no parent wants to discuss their child’s mortality. Go home and google it if you really have to know the answer to this one. 
8) “Will you have more children?” 
People ask me this for many reasons, one is so that I can have a daughter to look after Tilly when I’m older (sexist much) and secondly because, you know, there’s a big old risk I could potentially have more children the same. The short answer here is no. I will continue to search for an answer for Tilly’s sake and for my brothers sake so he can have a family of his own one day. But no, my womb is closed for business forever. 
9) “Did you do anything naughty when you were pregnant?” Usually said with a wink. 

Ah yes, ask an already guilt crippled mother if she could’ve done anything to have caused this. I cannot tell you how many hours I have agonised over whether or not I ate anything I shouldn’t have or how diligent I was with counting the kicks. Don’t even mention it. We carry enough guilt. Wink and see what happens ๐Ÿ™ƒ
10) “Are you her carer?…but you’re so young?” 

This has been asked a few times, people assume that only older parents have disabled children. I was 22. This isn’t the case. Parents of special children come in all shapes and sizes. More on this point later. 
Here are some things you should say to parents of special children: 
1) I got you some gin (and tonic)

2) Costa? 

3) Yes, I will offer to babysit when she’s 25

4)Your eyebrows look excellent, have you lost weight?

5) Pub? 

6) You don’t look tired. You look radiant. 

7) Shall I walk your dog? 

8) And take your children whilst you nap?
๐Ÿ˜˜