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.

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Girl Tribe Tales Part Five – When Life Goes “Pop”

Today’s Girl Tribe Tale is written by Jackie and describes her feelings around diagnosis and finding out she is a carrier of the fragile X gene.

A lot of feelings described here that I can relate to ❤️

You go through life thinking you know who you are, what you’re about, then life throws you a curve ball that explodes all that you know or what you thought you knew about yourself, your relatives and what makes you you. It basically “pops” that safe bubble.

I’d had a few minor “pops” in life from cheating first loves to an abusive partner whom I had my 1st child with. These “pops” you can pick yourself up, reevaluate things let them make you stronger as a person.

When my 2nd child Olli was born, he was lovely and cute, all the things a newborn should be but as he grew and developed I knew things weren’t right, I questioned the Health Visitor who just kept giving me the same crap about “all children develop at their own pace”. Well I’d had enough of this just before his 2nd birthday, I went to the doctors and demanded that I be referred to a paediatrician. The doctor was more than happy to do this.

When Olli was two years and three months old we finally had an appointment, I went armed with research about delayed speech and what I wanted. Anyway what knowledge we left with after that appointment was a “wow” moment.

As soon as the lady saw Olli she gave him a diagnosis of “fragile x syndrome” and ordered bloods to confirm it. She then outlined what it was, what it meant for him, where we could find support and sent us for genetic counselling. We had an answer but not one that was expected.

What was this “fragile x?”

How did he get it?

All these questions were now spinning round our heads.

Fast forward 3 Months, we got the results that confirm the fragile x syndrome, the following week we saw the geneticist who gave me my biggest “pop” she told me that I had passed this gene to Olli that I am a carrier of this syndrome.

33 years of life, knowing who I am and what I’m about to be told actually some of the strange things you do maybe because of this gene. Then to be told that the child I was pregnant with could also have fragile x as the more children u have increases the risk of the mutation on the gene expanding.

My life suddenly went Bang, I had no idea of this gene ran in my family, I had unknowingly given it to my second and third child. The guilt was awful, the guilt that I probably wouldn’t give my lovely new partner a “normal” child after I had given my nasty ex a “normal” child broke my heart because this man saved me from that horrid beast, he deserved the best of everything but I couldn’t do that for him. This ate me up so much.

I thought I knew who I was.

It took me a long time to accept that Olli and Finley would probably never leave home, Olli most probably will never have kids but Finley maybe as his fragile x is a lot milder than Olli’s.

Life with two children who see the world so differently from me, you and each other is hard at times, but in a strange way it is rewarding.

They have shown me a new way to love my children, to engage with them and a new joy for life that yes involves the occasional bite mark or scratch when a hug isn’t wanted.

Written by Jackie

Girl Tribe Tales Part Three – A Punch in the Face

A Punch in the Face

By Adelle Spindlove

Odd looks

Lengthened stares

Fear in knowing what to say

Forced optimism, it will be ok

Exclusion, inclusion

Mainstream or SEN

My child is different, can’t play that game

Don’t single him out, treat him the same

Birthdays, milestones

Bullshit forms

Confusion and doubt on what is best

Who fucking knows, I need a rest

A glimmer of hope

A small leap each day

Wouldn’t change my child but change the world we say

Talk, ask questions

It’s the fear of unknown

You’ve got friends here to gain

Acknowledge our pain

Watch and learn

We’re just the same

Slow down to my child’s pace, but

Pity me? You’ll get a punch in the face

And Breathe.

It’s been about a month now since Tilly was diagnosed with GAMT deficiency an incredibly rare metabolic disorder and I’m still no closer to putting into words how I feel about it.

I have spent the last few years holding my breath and waiting for the day I would watch the first love of my life turn into a shell. I was told she probably had a degenerative neurological condition like Rett syndrome. I spent years waiting for my worst nightmare to come true. The horror of waiting for my child to lose all of her hard earnt skills was similar to that feeling when you’re nauseous but can’t be sick. There’s no relief. It is a relentless and crushing feeling. I was holding my breath. Outwardly positive, inwardly waiting for the worst.

But that isn’t coming. Tilly doesn’t have a degenerative neurological disorder. They may even cure her epilepsy. My nightmares of losing her to a seizure may come to an end. I don’t need to tell you that the thought of losing my child makes my lungs burn and my throat close over.

How do you ever put into words how it feels to go from waiting for your child to lose everything to being told she will develop and the future should be bright.

It feels like I can breathe again. Like I can inhale and actually fill my lungs with the hope that the future for my best friend on the planet will be more than I could have ever hoped for her.

I have my sad moments. It’s incredibly tough to know that I could have saved her from all of this if it had been screened at birth. She didn’t have to be disabled, she didn’t have to be epileptic and she didn’t have to spend five years trapped in her own body. Treatment is too late now to save her completely. She will always have profound special needs. But she didn’t need to.

That hurts.

Tomorrow Tilly and I (and my mum) are off to London to meet her metabolic consultant and start treatment. I will be walking into that hospital with my lungs fit to burst with hope.

Hope for the girl I’ve been waiting to lose for such a very long time. The girl I get to keep. ❤️

1904 Days. D is for Diagnosis.

It took 1904 days for Tilly to be diagnosed with the rare metabolic disorder called GAMT deficiency. 1722 days of waiting from when I realised she wasn’t quite right at six ish months old.

Almost 2000 sleepless nights. Almost 2000 days wondering what the hell I did to cause this. Almost 2000 days of holding my breath. Waiting for them to tell me the neurologists were right and it was degenerative, that it would leave her quadriplegic and unable to do any of the things she loved. Waiting for them to tell me it would kill her. That I’d have to live my life without her one day. I can’t tell you about the nightmares I’ve had. The words won’t come. Just know that they were the type of nightmares that woke me in the middle of the night sobbing and struggling to breathe. All I ever wanted in life was a daughter, I couldn’t let myself think about losing her. My subconscious thought about it for me, I drowned in my dreams instead.

Drowning. Who knew you could feel like you were drowning whilst sat in a hospital room a few miles away from the sea. You can. You can sit there and feel the air leave your body as the professionals tell you that your child’s EEGs look bad, that the medications aren’t working, that things are getting worse. I have sat and silently drowned more times than I let myself recall. The pain is unbearable, the searing heat that rips down the back of your throat whilst you try to sit there and look composed and nod in all the right places…

Two weeks ago I had a call from Tilly’s geneticist. They had found a diagnosis. GAMT deficiency. She wasn’t going to regress, she wasn’t going to live in her wheelchair, she wasn’t going to die.

Because there is treatment for her condition.

My girl may well be able to talk, run, sing, jump, shout and do all the things she wants to do.

Again, I can’t describe how I feel about that. The joy is so pure and so unbelievably amazing that there aren’t the words. Never in my wildest dreams did I ever think she could be treated. Never.

Never did I dare to believe I could go on to have more children. But I can now if I want to.

It took me approximately 48 hours to realise the full extent of Tilly’s diagnosis. I was and am so happy about treatment options that I glossed straight over one glaring fact.

If it had been diagnosed at birth, she would have been saved from all this.

Treatment from birth has led to children being either unaffected or only mildly mentally “impaired”.

The sheer fucking unfairness that my child didn’t have to be like this. That she could’ve been the girl she was meant to be. That hurts. That hurts like a knife to the stomach. One blood test at a few days old and I could have saved her from all of this. She didn’t have to be locked into the prison that is her mind for all these years. She could’ve been free.

Dwelling on that will kill me. So my focus is on gearing up ready to start her on treatment and look forward to all the improvements she will hopefully make on it. She will never be “cured”. She will never not have severe learning difficulties but she will achieve everything she wants to. I feel unbelievably lucky that my child’s diagnosis has given her a very exciting, new future. I know full well that 99.99% of the time, this isn’t the case. In the back of my mind I am thinking of the parents who didn’t get this news. Who were told their worst nightmares were coming to life. I only wish I could share this with them. No parent deserves to go through that.

I have always said my girl would rule the world and she will, in her own wonderful way.

Bring on the future.

The Girl with No Friends

There’s a lot of things you take for granted when you have a child. That they’ll talk, walk, dress themselves etc. One thing I took for granted is that my children would have friends. I met my oldest friends aged two and they’re still stuck with me now after all.

But when you have a child with SEN, it’s not that easy.

One of the hardest things I’ve ever had to read about Tilly was a report about 18 months ago that stated that other children were scared of her. 100% true and 100% justified but utterly soul destroying. Tilly always wanted to have friends but she couldn’t behave appropriately around other children, her love for them involved ripped out chunks of their hair, skin and faces. It was pretty horrendous. There was a lot of blood. No exaggeration.

Last summer after eighteen months of various epilepsy medications with hideous side effects that caused her to be incredibly violent and volatile I decided enough was enough. She wasn’t happy. I took her off the massive doses of drugs she was on.

Best decision I ever made. The difference was almost immediate. Her brother could be around her for the first time in his life. I could go to the toilet and not have to close her into her bedroom to keep him safe from her. They have Friday night sleepovers in her bedroom and curl up together. These are siblings I had to separate with a metal room divider at one point to stop her from tearing him apart.

Tilly started special school in September alongside some of her peers from Nursery. They remembered her and rightfully so they were scared. A few months Tilly was chosen by another boy in the class as his friend during a friendship activity. I cried when I found that one out.

Tilly’s behaviour around other children improves every day. Through the impressively hard work and determination of the staff at her school, she has been taught and has learnt how to behave appropriately around other children most of the time.

Today Tilly had her first ever play date with the other girl in her class. They went to Nursery together too and Tilly targeted her as she loves her and her hair is especially long and lovely to pull 😫. But not anymore. Both girls were happy to see eachother. They sat together with her younger sister in a restaurant and nothing was broken, no one was injured and the place didn’t burn to the ground.

My child finally has friends aged 5 and a bit.

And I have a friend who gets it. ❤️

How to raise a child with special needs as a single parent and juggle everything else.

So it’s no secret I have a lot going on. I’m a single parent, I have two small children and one happens to be disabled. On top of this I’m a student Midwife, a peer supporter and all round busy bee. It’s a juggling act but I manage. I was asked how I do it all…

This isn’t an easy question to answer. I’m not sure I can really do it justice as I don’t entirely know. But here goes:

• Always say yes. If someone offers you help, say yes. Don’t be a martyr.
• Prioritise and don’t waste energy. You don’t have to do it all. Find ways to make your life easier. Get a dishwasher, hire a cleaner, get your Mum to do your ironing 😜.
• Accept how you’re feeling is okay. It’s okay to think it’s really unfair. It’s okay to feel really sad, admitting that to yourself and accepting that it’s okay to feel the way you do is half the battle.
• Learn to fight. You won’t get anywhere until you learn when to stand up and fight for what your child needs. Never let them fob you off and never back down.
• Have PJ days. You don’t have to be out and about all of the time. It’s okay to stay home and chill out. Kids need down time too so don’t feel guilty if you’re all still in your pjs way past lunch.
• Don’t do it on your own. Find your tribe. Tilly has a team of around 50 people who support me to raise her. Family, friends, teachers, support staff, nurses and paediatricians.
• Celebrate every little thing. We have a roast or sit and watch a film cuddled up eating snacks every time something positive happens. Life is for celebrating after all.
• On a similar note always plan something to look forward to. Even if it’s a quick coffee with your friend, life is more bearable if you know something fun is on the horizon.
• Self care self care self care. Treat yourself. Do a face mask, have a bath, get your brows done, buy the shoes, go and walk the dog. Do what makes you happy.
• Try not to stress. Stress helps no one and it makes you ill. Write a list of what you need to do, tick it off and then go and have a lie down. It’s okay to delay filling in that form or making phone call that makes you want to cry for a few days.

But most of all, talk about it. Talk about how you’re feeling, talk to others in similar positions, talk and laugh with your friends. Always talk.

I Drug My Child to Sleep – Confessions of a Tired Mum

I’ve been so tired that I’ve slept fully clothed many times. I’ve been so tired that I haven’t bothered to make myself dinner and just curled up instead. I’ve even been so tired I’ve almost gone to bed without taking my three year old up to bed too.

This is life with a child who does not sleep. I rely very heavily on caffeine.

A few months ago, I sat in front of Tilly’s neurologist and told him that my child was broken, she could not and would not sleep. She was surviving on a few hours of broken sleep a night. I was only half surviving by letting her sit and watch Mr Tumble half the night.

So he offered me melatonin. Melatonin is a hormone made in the pineal gland in the brain. Tilly does not make enough of this hormone so now I give her synthesised melatonin made in a laboratory. It puts her to sleep but doesn’t keep her asleep.

It’s been the best thing I could’ve done. Raising a disabled child and her brother whilst juggling university and work is hard enough as it is… at least now she can have a few more hours sleep and I can catch a few hours too before she starts waking again around 3am and I have to get into her bed.

Thirteen Ways Goverment Budget Cuts Have Failed my Family (A Shortened Version)

It’s been in the news lately that my local  county council are facing massive budget cuts and are failing SEN children. Was I shocked? Course not. Here’s a little list of some of the ways that budget cuts and “belt tightening” have personally affected my family so far in the last five years. 

1) When I was in labour with Tilly, the unit was understaffed and so the midwife failed to spot that I was haemorrhaging heavily until my mum pointed out I was turning grey. I almost died in that labour room. 
2) When Tilly was a few months old, my GP at the time told me she was “failing to thrive” but couldn’t refer me to anyone bar the growth paediatrician as the referrals would be rejected. 
3) when Tilly was 10 months old my wonderful Health Visitor did her one year check early and sent off referrals to physio, development and speech therapy. All were rejected. Not enough funds.
4) When Tilly was 18 months old, those referrals that were resent countless times by my wonderful Health visitor were finally accepted. She couldn’t walk, feed herself or make many sounds by this point. 
5) Those referrals didn’t turn out to be very helpful, the physio wasn’t enough, the speech therapy was pretty much nothing, only portage and her new developmental paediatrician seemed to be able to help. My parents fortunately paid for private physio and occupational therapy to finally get her on her feet.

6) When Tilly was struck down by a virus aged 2, she could no longer sit, crawl or walk. Budget cuts meant that rehabilitation physio was a piece of paper. 
7) When she was hospitalised for a week suffering endless seizures, again she couldn’t walk. This time a charity stepped in and got her walking again. 
8) It took eighteen long months to get Tilly the wheelchair she needed and when it came, it wasn’t really suitable. There was no raincover, it was impossible to push and very very heavy. Budget cuts meant I had to like it or lump it. 
9) The local children’s centres were closed. We no longer had a safe haven to go. Isolation crept in. 
10) Tilly was discharged from occupational health that she desperately needed because her therapist went on maternity and budget cuts meant she wasn’t replaced. Again, we had to go private. You don’t want to know how expensive that is. 
11) The disability team at social services have turned us down multiple times for support and respite “any single mother would struggle with two young children” loosely translates to “we don’t have any money so until you put them at risk, soz”
12) Last year my child tax credits were stopped for months with no warning thanks to a spiteful company called Concentrix going after every single parent they could find. It was a very difficult few months and I am lucky enough to have my parents to help me feed the children. Others were being turned away from food banks and suicidal, feeling they had let their children down by being unable to feed them. 
13) Every appointment, every referral, every service, every phone call is painful. You know that you’ll be waiting 6 months for a ten minute appointment, they are so understaffed. You know you’ll be told no over and over and over again.
So. Austerity Britain, how much worse does this have to get before something gives?

Lady Gaga – The Cure

I’m asked frequently who exactly I’m finding answers about Tilly for. The answer to that is pretty complicated and I don’t always know. Tilly doesn’t know she’s different after all. It is notoriously difficult to get the support and services for an undiagnosed child. You ream off lists of symptoms and pray you’ll say the right one to tick the box for what you need. It took close to two years to get Tilly the basic level of physio, speech therapy and occupational she is entitled to. “I don’t know” is not the right answer when you’re asked what is wrong with your child. 

So firstly but possibly not primarily, I look for the answer to benefit Tilly. I want her to have the right input and level and care that she needs for the rest of her life. I will never let them do anything invasive or unnecessary. She is a person first and foremost, not a research subject. 

Secondly, I want to know for my own needs. I need to know for my own sanity. I need to know if it was my genes and my body that failed her. You’d think it didn’t matter, it’s not as if I can control what my genes do. But it does matter. 

I am only 27 but I cannot and will not have more children because I don’t know if I will have another disabled child and I don’t know how severely this will affect my child over the course of time. We still don’t know if Tilly’s condition is degenerative or not. With an answer, I can undergo genetic counselling or prepare myself if I ever do want to have another child. I am too young to accept that I will not have more children. But I can’t without an answer. 
Thirdly, I am a sister and a mother to another child. I search for an answer for my brother and my son. I want them and their future partners to be able to have children without worrying that they too could have a disabled child. Tilly is wonderful but I would not wish her difficulties on another child, epilepsy is a cruel condition and being unable to speak is very difficult. I owe it to my brother and my son to find all the answers that I can. Tilly’s DNA is with great ormond street now to determine if her epilepsy is genetic. I want them to be able to educate themselves and access all the support available to them when they are ready to have children. 

Lastly I do it for families just like mine. The more DNA being tested, the more answers will come. Families like mine will not have live in limbo forever. 
That said. I think a lot about what I’ll do if an answer never comes and that’s where Lady Gaga comes in: 
“If I can’t find the cure, 

I’ll fix you with my love”
I will continue to campaign and fight and advocate for my child and others like her to have everything they need. I will be her voice. I will make sure she has the very best and reaches her full potential. I will do this until the day I die. I’ll no doubt use my last breath to mutter something about equal rights 😅
I’ll do all of that because I love her unconditionally. And that counts for more than anything else. 
❤