A shitty awkward sort of disabled

Now, feel free to kick me hard in the shins if I offend anyone with this one, I will try my best to write it in a way that isn’t deserving of a shin kick but it’s something that has troubled me for such a long time.

*Disclaimer* if you tell me to embrace my child’s disabilities or tell me that special children are sent to special parents I’ll kick you in the shins*

My child is a really awkward sort of disabled.

What do I mean by that? Well, she’s in this bizarre sphere of disability where her brain is much less developed/damaged than her body and that means doesn’t quite fit anywhere. No one ever actually knows what I mean when I say she has a metabolic disorder.

She’s too “severely mentally impaired” to be alongside those with learning difficulties who can care for themselves in a basic way or communicate. She’s not autistic, she doesn’t have sensory issues and she eats like a starved dog. Her learning difficulties are profound and severe whatever that means. She can’t say a word and cant sign. She’s almost six and I’m still made up that once she put a ball in a hole and responds to her name. That’s the level we are at.

She also doesn’t fit with those who have severe physical needs, she has a wheelchair but can walk (with purpose straight into the path of a moving car she would love to lick) because of this I’ve been told that I’ve stolen her wheelchair from a more deserving child 🙄she’s still small enough that I can lift her, one day she may need a hoist as she doesn’t understand and wouldn’t be able to get herself up onto a changing bed and lie herself down when prompted to do so.

So what does this awkward sort of disabled mean?

Well, events like the autism or SEN friendly events aren’t suitable. She doesn’t care if somewhere is loud or busy. She’d trash the place and attack the other children whatever the weather. She also has zero interest in any activities. My default reaction now when it’s suggested to me to send Tilly to a SEN dance class is to smile and nod and then scream silently in my head. She’d have zero interest and would much rather lick her arms or work out the nearest escape route. Unless they’re up for setting up a screening of mr Tumble with every other child wearing protective gear… it’s not for her. She’d much rather bolt for the nearest danger and cackle with joy as you rescue her from certain death.

She doesn’t qualify for respite care (eyes on you Hampshire county council, thanks for nothing) despite being incredibly volatile, incredibly violent, taking 12 doses of various medication a day and being unable to care for herself in any way whatsoever. If Tilly’s hair fell in front of her eyes. She would not think to brush it away. If her trousers fell down she wouldn’t think to pull them up, that’s if she noticed them round her ankles at all. She’s physically able but can’t actually do any of the things that physical ability could afford her.

Don’t get me wrong, Tilly is by far the best girl in the world and I’m her biggest fan, she is very happy and content with her lot when she’s not having screaming meltdowns over nothing 400 times a day (treatment has been a blast) but we are stuck in this shitty awkward type of disabled where nothing is quite right. Everything is difficult and there’s a lot of screaming. She’s too disabled or not disabled enough. And that my friends, is shite.

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 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

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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