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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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. 

“Failing”

I’ve always been a big believer in the power of words. Today marks four years since I was told that my nine month old baby was “failing to thrive”.

Failing. 

I was failing her and so she wasn’t thriving. I went home and I sobbed. It had been nine months of weekly weigh ins, weekly “why don’t you give her a bottle?”, weekly insisting that there was something wrong with my baby, they were wrong, she wouldn’t catch up. My wonderful health visitor was the only professional person who took me seriously and did her one year check early to start referrals to the specialists. The GP was the one to tell me my child was failing to thrive and he referred her to the growth paediatrician. The only referral that was successful. Every other service came back and said no. They would not help yet. My wonderful health visitor battled with them all until they accepted she needed their help.

Funnily enough, the growth paediatrician was the only positive aspect. She wasn’t failing, she was just small. But I sat in her office and begged her to check Tilly. My ‘failing’ baby had no reflexes and it was mentioned she may not walk. It was a very difficult time and another seven months before she saw any of the services she needed.
The word failure swam around in my mind for a long, long time. I took it personally. I had failed her. I was her main caregiver so it was my fault somehow. Maybe I didn’t interact with her enough? She was sick almost constantly so would stay upright and strapped to my chest to keep as much milk in as possible. Did I harm her by doing that? Should I have left her to scream in pain on the floor to work on her muscle tone?
Not only that, but they had described my baby as a failure. My perfect, wonderful baby. I was heartbroken.

Four years later, Tilly has profound learning difficulties, is officially classed as disabled and has uncontrolled epilepsy. Would I class her as failing to thrive?

Never. 

My girl is a warrior. She’s never failed at anything. She’s fought tooth and nail to be the very best she can be no matter what has been thrown at her. She has low muscle tone and very flexible joints yet has learnt to walk multiple times and gets stronger every day. She has epilepsy that charges through her brain constantly yet still pushes on to learn new skills.

Tell me exactly what part of that is failing to thrive?

I hope that one day doctors will stop using such a hurtful and unneeded term. Use the word delayed. Delayed gives hope. Not yet, but one day. Failure is a cruel word to describe anyone. Words are powerful, use them wisely.

My girl is NOT failing to thrive. My girl is incredible.

Ten Thoughts on Six Monthly Reports

Tilly’s report from her development paediatrician (who is excellent and says it how she sees it, I like her a lot) came today. It’s always a joy. Here are the ten things I think when I read her six monthly report:
1. Ah fuck. Not again. How is this my life? How is this her life?
2. Nope, they still have no idea what’s wrong with her. I knew this, why does it still shock me?
3. I wonder if anyone will ever know. I wonder if I’ll marry the doctor who works it out. I bet I’ll either cry or snog them.
4. The word ‘severe’ sucks. At least I can send this to DWP to prove she’s disabled enough for them. Silver lining I suppose.
5. 🖕🏻 to the stupid buggers that told me I was neurotic and my child was not disabled. I hope they step on plugs every day for the rest of time.
6. More swear words.
7. The current state of disabled services is shite.
8. Incoherent swearing about the lack of disabled services and the increasing pressures on NHS staff.
9. I really like gin. I should keep it in the house. I’ll hide in the loo and eat a magnum instead.
10. I really love my Tilly. You can list all the problems in the world, she will always be the best girl on the planet.

 

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Unexpected?

So, it’s about time I finally got myself a little website after a glorious year of blogging over on Facebook Ta dah! . It’s been an epic year, I’ve been invited to all sorts of fabulous events, reviewed some wonderful books and most excitingly, I was nominated for an award! I spent an evening in Coventry drinking more booze than strictly needed surrounded by amazing bloggers from the SEND community, more about them later.

Time to tell you a bit about me and why I chose the name Mama Unexpected. So here goes.

Hello! I am Hana aka Mama Unexpected. I have been writing this little blog for over a year now and what a year it has been. A year ago I was pretty lonely and convinced that no one would ever connect to my life as it was so far removed from the norm. I resisted writing a blog for a very long time because I didn’t think anyone would get me. I was so very wrong. I am blown away daily by the solidarity and compassion shown to us. 18893346_382026098860463_599461903010157932_n

A little about me and my family. I’m 27 and live in South Hampshire with my two children Tilly (4) and Arlo (3) plus Bodhi the dog. My main hobby is drinking gin with or without tonic but I don’t get much time for that as I’m a fairly busy woman! Since September I have just finished a year at college studying health sciences and in two months time I will be starting my midwifery degree. Alongside this, I work for a wonderful charity providing breastfeeding peer support and coordinating the local project, raise two small people by myself and organise big ol’ charity fun days. So not much.

To explain the blogs name… I shall rewind back to this time five years ago. I had dropped out of university a year before, I was a shell of a person after wasting my teenage years with a violent psychopath of a “man” and had found myself pregnant after three whirlwind months with my future husband. I was 21, all my friends were in their final months of their degrees and I was adamant that my life was going to be bloody perfect too. The next two and a half years were a blur of babies, weddings and a house move.

Fast forward to May 2014, eight months after the wedding and I found myself a heavily pregnant single mother with an 18 month old at home. It came as a huge shock to almost everyone. I was living the instaperfect dream after all. I had it all. Except I didn’t, I had been trapped in a very unhappy marriage and was miserable. But that didn’t scare me anywhere near as much as being a single parent of two. I felt trapped. I was stuck at home with a baby and another one due imminently whilst my husband waltzed off into the sunset to live the bachelors dream and I was left to pick up the pieces. He visited periodically for a few hours for a few months but that soon stopped. He did eventually come back in September of last year and sees the children for a few hours every other weekend.

Tilly, my beautiful firstborn, progressed normally for the first few weeks and months of her life but then the milestones didn’t come. It was a slow and incredibly painful realisation that my perfect child was disabled. As yet, Tilly has no diagnosis. Whatever she has is so rare they don’t know what it is or why. She is severely globally delayed, non-verbal, autistic (allegedly), has hypermobility, low muscle tone and epilepsy. These labels however, do not define her. Tilly is the sort of child that is impossible not to love, even with her fingers gouging out your eyes and ripping out your hair, she is still incredibly loveable. She is completely in tune with the emotions of others and fiercely loyal. If she picks you as her friend, you’re her buddy for life. Tilly is also incredibly determined, despite her epilepsy wiping her brain constantly, she battles on and has relearnt to walk many times. She blows our minds every day and is my greatest inspiration. She starts school in two months time and I am terrified.

Arlo, my tiny second born is your typical three year old. He has no special needs or delays and will talk your ear off given half the chance. He is the most loving and kind little boy there is and has a wicked, sassy sense of humour.

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Here they are!

Did I ever expect my life to be like this? Did I think I’d be a single mother at 24 and a carer for my disabled child? No, of course not. My life is not what I expected in the slightest. It is so much more. Becoming a mother and facing all that we have faced together as a family has put me right on the path to being the person I want to be. Strangely, my husband leaving me was the best thing that has ever happened to me. I was free. I learnt to love myself finally after so many years thinking I wasn’t enough.

I believe strongly in being kind to others and to forever pay it forward and give as much as I possibly can to those who need it.

My life is definitely unexpected and at times utterly overwhelming but mainly, it is more than I could’ve ever hoped for.

Thank you for reading my blog, thank you for the last year and thank you for keeping me company.