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. 🍉 🍉. 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. 🍉. 

I Dont Know How You Do It  …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 🙃
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?
😘

Broken Home

I had a conversation recently with a friend who is in a very unhappy relationship but won’t leave because they don’t want their child living in a broken home. 
Like mine. 
Obviously they didn’t say that bit but it made me feel pretty sad. See, my son has always lived in a ‘broken’ home, my husband left when I was pregnant and didn’t want to know until he was two and a half. My son has only ever known a one parent family and sees his other parent for a few hours every other weekend. But I don’t think that’s been a disadvantage for him. 
My son lives in a home full of love. There is no uncomfortable atmosphere, no raised voices, no arguments and no upset. He has never witnessed the blazing arguments I had with his dad before he was born. He knows only love and a tired faced mum who will hold his hand until he falls asleep and always come when he needs me. 
I would rather parent my children alone in my broken home forevermore than subject them to an unhappy and toxic environment. I would rather teach them to choose happiness. Not lie in the bed they made. You can always work on the bed you’ve got, buy a new mattress and some fancy pillows or you can realise it’s not the bed for you and buy a whole new bed. (Yes I am tired and want my bed).
I know that friend doesn’t read my blog, but if they did. I’ll say what I said to their face. If it can’t be fixed, be brave and be amicable. Your child will be happier with two happy homes than in one miserable one. 
There is no shame in being a single parent. You tried. It didn’t work. Single parents are kick ass. 
❤. 

Dear New Teacher, please don’t break my child.

Dear New Teacher,

In three short weeks my firstborn will be starting school, it only feels like yesterday that she was a tiny baby with a fuzzy peachy head, skinny chicken legs and big blue eyes. She will always be my baby. Here she is at a day old.


Tilly has been at nursery for three years now and almost full time for eighteen months, I know she will adapt to five days a week well and enjoy her new school. I can already tell she likes you and that you like her from her visits and that brings me so much comfort.

But please, please never put a lid on my child. She can’t talk, but she will. She can’t do most things your average toddler can do, but she will. If you believe in her. We were told Tilly probably wouldn’t walk. She’s retaught herself to walk multiple times now.  If you believe it, she can do it.

Please be patient with her. It will take weeks, months, even years for her to learn basic things but she WILL if you keep going. Please don’t give up on her.

Please remember she is one of a kind, please don’t tell me you’ve met loads of children like her. You haven’t. They are all different and my one is especially rare. No diagnosis means no limits. She is an individual.


And most of all, I hope you fall in love with her like everyone else has done. She has a lot to teach you if you let her. Not only will she teach you the absolute limits of your patience, she will teach you how important the little things are, how important it is to never give up and that you should never underestimate the power of a small ginger girl on a mission. She will change your life if you let her.

Please don’t break her.

Dear Prime Minister… An Open Letter. 

Dear Prime Minister,
I was challenged to write you a letter so here goes. 

Almost five years ago, I gave birth to a beautiful little girl called Tilly. Tilly, as it turns out, was not your average baby. Tilly is disabled. Oh yes prime minister, it’s a letter about people with disabilities. Good grief. 
From very early on, I have faced endless battles to get my child the care and support she needs. Every. Single. Referral (That I had to beg and cry for) was a flat no. They couldn’t help. Another time. Every. Single. Time. I’ve had to beg and cry and persist, calling over and over and over again until I could get a referral to physiotherapy, occupational therapy, wheelchair services etc etc. The list goes on. All services she needs. All services that had to say no first of all. 
Did they want to say no? Of course not, the NHS professionals are an incredible bunch of people. They work so hard to give what they can to the patients they support despite being massively over stretched and massively underfunded. Strong and stable my arse. Did you know that a few weeks after a weeks long stay in hospital, when she couldn’t sit, let alone walk, one service discharged her because her therapist was going on maternity leave and there was no one to cover for her. I could (and have done so) cry rivers for the incredible nurses, therapists and doctors who support my child despite the dire circumstances. 
Every single month I face lengthy battles to get hold of professionals, to pin down over worked doctors to come up with plans for my child’s epilepsy and future. Three times now, I’ve been told that I cannot have respite support for my disabled child as a single mother as  

“Any single mother would struggle with any two young children. “

I can guarantee you that what they really meant is: “you need to have a major breakdown or we cannot help you, we don’t have the funds to help you”. I am one of the lucky ones, my mental health has remained in tact, but I am not surprised so many in my position crumble. Its a tough gig, constant fight or flight mode. 

Do you know how hard that is? Do you know how hard it is to put on your battle armour and fight tooth and nail for the basics for your child when you’re dealing with the exhausting realities of raising a disabled child? It’s hard enough having to watch your child have a seizure, it’s even harder having to write in great detail about their epilepsy to prove they are epileptic enough for the DWP, more on that in a while. 

Now let’s talk about money. Cold, hard cash. It’s quite frankly an insult that carers receive £62.70 a week but only if they are caring for someone for more than 35 hours a week are you joking? That’s £1.71 an hour for 35 hours a week. It’s okay though, as we can earn a whopping £116 a week as well. That’s a cracking £178.70 a week. Good eh? Not only that, if you can’t work, cos you know… you’re spending 35+ hours a week caring for someone… they put you through humiliating appointments at the job centre where you are treated like a lazy lay about. 

“But don’t you want to work?”

I was once asked whilst sat there with my newborn curled up on my chest and my disabled toddler sat screaming next to me. Oh how I loved that one. I do work now as it turns out, I am worse off for it but at least I don’t have to sit through that anymore. 

Let’s not forget the three months I was left without thousands of pounds because HMRC decided to end my tax credits with a days notice and accused me and thousands of other single parents (ah yes, I’m one of those single mums, my husband left me whilst I was pregnant. Life choices hey) of being fraudulent. Three hellish months where I survived on the good faith of my family and friends. I saw others relying on food banks and suicidal because they couldn’t even feed their children. 
Next. DLA. Disability living allowance. That’s a good scheme. It’s helpful. If you can get it. Applying for DLA is vile. The whole process is vile. Every question must be answered in an exact way to tick the box… but the way is never revealed. You have to prove your child is disabled enough for them. You have to write in minute detail exactly how your child is not like others. It’s a very painful process, especially knowing that the person assessing it is desperately trying to trip you up. They have targets to beat after all. I have sobbed many tears over DLA forms and still have to fill in more. It’s soul destroying. 
Every single day, in almost every way, my disabled child’s life is affected by you and your government. My child and my family have to battle on because you don’t care about us. People with disabilities are not important to you. They aren’t seen as people and they don’t have a voice. 
Except they do. And we will never stop shouting. You learn to become a warrior when your child is disabled and that comes in very handy. 
People with disabilities deserve equality and their families and carers deserve support. 
We shouldn’t have to fight, scream and shout to get the basics for our children. 
We shouldn’t be made to feel like lay abouts, benefit cheats or fraudsters. 
We deserve support and respect. Support and respect we do NOT currently receive. 

I will never stop campaigning for equality, for fairness and for adequate support and provisions. Not now, not ever. 

Prime Minister. That’s all I have to say.

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Dirty Floor or Toilet? A decision I never thought I’d have to make. 

Today is changing places awareness day. 

Tilly is almost five now and doubly incontinent so is still in nappies. She is getting bigger and bigger and there is one thing that is really starting to become difficult out and about… nappy changes. 
When it’s time for a nappy change, I have two choices for my daughter, I either lie her on a dirty disabled toilet floor or I balance her across my lap whilst I’m sat on the toilet. Both options are disgusting and very undignified. I have been known to lie her down in the back of the car. She’s still small, this won’t be an option forever. 

“But there’s disabled toilets evvvverywhere!”

I hear you. But really disabled toilets only cater for those who are able to use a toilet or can empty a catheter. Without adjustable height full sized changing tables and hoists, the basic need to be clean cannot be unfulfilled. 
This is where changing place toilets come in. Changing places toilets cater for all/most disabilities and are essential for more than 250,000 people in this country. That’s more than a quarter of a million people who don’t have the option of using a bathroom outside of their home. 
How many changing places toilets are there in the U.K.? Less than 1000. Sounds like a lot? It’s not, there’s more toilets in Wembley Stadium (they have a changing place too) 
Changing places toilets don’t take up much room,  roughly the same size as a parking space. 
People with disabilities deserve equality in every area of their lives, let alone in the very basic need of somewhere to use the facilities.
You can learn more about changing places here: Little mama Murphy and here: Mum on a Mission

Back to Reality with a Bump

I’ve had a whole week off from parenting. The kids went to Devon and I spent five days in Cornwall with my college friends celebrating getting into university – have I mentioned that yet?  

Thrown back into the deep end this week with appointments every day. Arlo had his transition meeting at preschool and met his new keyperson, he had a whale of a time and will, no doubt, move over to the “big boy” side over the summer. One of his first key persons from when he started aged 10 months reminded me of how much baby Arlo enjoyed his farm animal sounds and would be heard mooing and baaing all day long 😂 
Next up we have Tilly’s final transition day at special school. I’ve been told that her new teachers are already smitten and very keen to learn about and understand her so I’m feeling less terrified than I was a few weeks ago. She will be in the smaller, higher needs class and will be trying without 1:1 care but we shall see how that goes 😬 

Then we have her home visit for school, here’s hoping that I can make it look like three terrors (inc dog)  and their equally terrorising mother don’t live there… they don’t need to know how unorganised the chaos is just yet…

And finally, a taster session at a centre for children with neurological disorders to see if they can help with some conductive education, either alongside school or with part time school if they feel that would work for her. 
And breathe. 

Not The Favourite

I am not my son’s favourite person. Not even by a long shot. 
The world begins and ends with Nana (and Emmy from nursery school). 
I am very lucky, the bond my parents have with my children is wonderful. They could not love them more or do more for my little family of three.
But I am not my son’s favourite and that sucks. 
Tilly is a fully signed up member of the mama fan club but Arlo would rather be at nana’s house. 
Sometimes it sucks that I don’t have endless time to just play. I have a house to keep clean, endless appointments for Tilly and a Tilly to keep amused/ keep away from him when she’s being violent (all of the time)
Sometimes it sucks that I have to be the bad guy. The one that says no to cake as a meal, the one that insists on bedtimes and the one that can’t just drop everything to play dinosaurs in the garden all day. 
I am very grateful that my children have another parent figure in my mum. My childhood was wonderful because of her and she brings them both so much joy. My children would not be the wonderful beasties that they are without my mum. She is always there for endless cuddles, beach walks, ice creams and cake for meals (though my lovely Nan is the main culprit for Arlos cake habit). As much as it does suck that I am not number one, I’m glad that he has the same number one that I had growing up. My lovely, slightly terrifying mum. Love you, you old goat. 
I hope that one day in the future Arlo will get it. I hope he will get that I was busy keeping the roof over his head and the food in his belly. I hope I can find the right balance between studying, working, volunteering, child raising and being a fun mum. 

And just as I posted this blog: 

Arlo – “I want you forever mummy” 

Goodbye Keppra 

Tilly was diagnosed with epilepsy back in January 2016 after a long weeks stay on the Starfish Ward at QA hospital in Portsmouth. After a disastrous trial of carbemazapine, when Tilly reacted terribly to a very low dose and could barely sit, let alone stand or walk, she was put onto a drug called Keppra. After ten months of very little change, she started to go downhill, her absences were longer and her behaviour got worse. She started on epilim alongside the keppra. 
It didn’t work. 
Things got worse. EEGs showed constant seizure activity and that at night, she was not asleep, she was seizing all night instead. I had always loved watching her sleep, it was a terrible blow to realise that she wasn’t safe and happy in her dreams like I had so hoped. Six weeks of steroids commenced.
They did not work. 
She was hungry and angry hangry all of the time and pretty unbearable to be around. So, she was started on clobazam, even more drugs poured into her tiny body.
They did not work. 
She was, to put it simply, high as a kite, and more spaced than ever. Another emergency appointment with her neurology team and I took her off of the clobazam immediately and we agreed to wean Tilly off of the keppra. 

The change has been incredible. Tilly has said her first sounds in context. Buh for bubbles. Buh for ball. Tilly is starting to understand what I’m saying to her. Mentioning the swings or icecream at bedtime last night caused happy squeaks and leg kicks. 

Today was Tilly’s first day keppra free for 19 months. The relief and the guilt is utterly intertwined. 
Relief that she’s come down from huge amounts of epilepsy meds to just one without having a massive seizure and hospital admittance. It is a fine line and I am terrified that I’ll push her over it. But the improvement to her quality of life and mood, for now, is worth the risk. I found her cackling her head off this afternoon after getting underneath her bed. I can tell you that she was NOT aware that there was a space under her bed before now. It’s quite exciting how much she’s noticing and delighting in. 

Guilt because I’ve been drugging my child up to the eyeballs for the last year and a half and as it turned out, they were making her much, much worse. 

There is no current future plan. Her team are at a loss and her appointment with the consultant at the next hospital isn’t until October now. I am going to ring her epilepsy nurse on Monday to discuss alternative therapies for her.
Epilepsy is an awful condition but I am determined to find the right balance for my girl. 

You Can.

This week my place at University to study midwifery was confirmed, 72 days until I start.

I’m doing what I’ve always wanted to do.

When I became a shell of a person at the hands of an abusive boyfriend at 19, I thought I couldn’t.

When I dropped out of university the first time at 20, too tired and too fragile to go on, I thought I couldn’t.

When I fell pregnant three months into a relationship at 21, I thought I couldn’t.

When it became clear my daughter was disabled at 23, I thought I couldn’t.

When my husband left me and I had another baby at 24 I thought I couldn’t.

When I became my daughters carer at 25, I thought I couldn’t.

When I started college at 26, I thought I might try.

And here I am, 27, two children, one pesky dog and a whole load of baggage. And I know I can. And I know I will.

And so can you. You can and will do whatever you damn well want to. Never give up, no matter what.

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