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.

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. 🍉. 

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.