Today marks the first instalment of the Girl Tribe Tales! A collection of stories and even poems from The Girl Tribe. It’s a celebration of womanhood, motherhood and all the joys, trials and tribulations that… More
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. ❤️
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’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.
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?
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.
It’s been three years since a tiny Tilly crawled through the doors of her nursery. She was 22 months old and was just starting to walk with the help of a lot of physio. I wasn’t ready to let her go, it had been gently suggested by the portage (play therapy) coordinator that it would do us both good. I had never wanted to send her to a nursery, she was going to go to the local preschool two minutes away, not five miles away. It was incredibly difficult to let her go, I felt I had failed as a mother, I wasn’t enough for her. I couldn’t give her enough to be at her best. I had a two month old at home and was a newly single mother, I felt like I had let her down entirely. Here she is at the age she went to nursery:
But from day one, the staff at her nursery made me realise something very important. I hadn’t let her down, not even a bit. I had given her the very best chance by putting her needs before my wants. She needed to go to a nursery who could give her intensive one on one interaction and intervention from day one. She needed to go to a nursery that nurtured her and supported me to be the very best mother I could be to her. Not only that, I needed to take some of the pressure off, let them do some of her daily therapies and let myself have time away from being her carer as well as her mum.
Every single step of the way, from applying for DLA and fighting for referrals, EHCPs and equipment, they have been there to hold my hand. They’ve been an emotional crutch for me during the very hardest times. No one batted an eyelid when I brought Tilly back into nursery after a huge regression caused by a bug during the summer of 2015, they didn’t judge me for leaving my newly unable to walk three year old in their care for a few hours, I needed those few hours away from her to give myself space to sob and regroup, seeing her that way was devastating, They just focused on helping me to help her to walk again. This happened a few times. After her week long stay in hospital having constant seizures in January 2016, she was back to nursery shortly after. Again they helped her refind her strength.
When it became time to start her EHCP, they did it all, guided me through the bits I needed to do and listened to everything I wanted and needed for Tilly. It’s not often you’re listened to (really and truly listened to) as a SEND parent, I have been very spoilt with almost daily hand overs and chats about her progress and discussions on what we could all do to help Tilly are the norm. Nothing is ever too much. It will be a hard transition for me into school, but not for Tilly, I know she’s been given the very best handover possible.
Child care practioners (is that the official term?) are such undervalued people, they love and nurture our babies into little people and that should be applauded and appreciated so much more than it is.
I guess what I want to say is simply thank you.
Thank you all for loving my children.
Thank you all for giving them your absolute best every single day.
Thank you for listening to me when I needed to be listened to and for guiding me when I needed to be guided.
Thank you for never giving up on Tilly. You have always believed she will achieve everything she wants to. Repeating the same tasks with her every single day for months and years to try and get them to go in… not even I can manage such dedication.
Thank you for being my safe haven over the last three years. The three hardest years of my life. Where would I be without you?
Thank you all so very much. Don’t be surprised if I bolt out of the door on Friday after Tilly’s last ever day with you. I will be running off to sob in the car as I’m not a big fan of PDAs (thanks for making me cry so many times in TAC meetings 😂) Seems silly really as I’ll be back on Monday with Arlo…
But when you’re on a journey as unknown as ours with a child as rare as Tilly… finding a place that gets her, accepts her and truly loves her for who she is… well, it’s probably almost as rare as she is.
I don’t feel ready for Tilly to start school next week but I know she’s going as the very best version of herself and with the bar set very high. If her new school come up short to the level of care she’s received at nursery, they’ll find me marching up there to raise hell. I know what we deserve now and anything less won’t be good enough.
Thank you. ❤
I wasn’t shocked at all today to read that the hospital, Queen Alexandra in Portsmouth, where my children were born and where Tilly has been cared for many times over the last five years was slammed by the Care Quality Commission in their latest report.
I wasn’t shocked at all… No. I was furious. After all, this is the hospital that saved my life when I almost died during childbirth. This is the hospital that safely brought Arlo into the world. The place where Tilly was blue lighted at 3am after an hour long seizure. Where we’ve stayed many many nights. Where we go for a billion appointments a year.
I was furious because I remember the midwife who promised me I’d be okay as I was wheeled to theatre after haemorrhaging and the obstetrician who saved me that day. I remember the paramedics who made it bearable to sit in an ambulance whilst being blue lighted at 3am thirty minutes away (they closed my local hospital) willing my child to stay conscious, the nurses who held my hand as I hopelessly watched my child locked into yet another seizure night after night. The same nurses who always find us a side room because Tilly can’t cope on a busy ward. Who make me toast after a long night and do whatever they can to make such a horrible experience that tiny bit more bearable. Not forgetting the doctors and support staff.
I was furious because I watch the staff at our hospital working themselves into the ground, under staffed and over stretched but always giving us their best. I’ve never felt like anything was too much. They’ve always had time to reassure and double check. I watch them and I get so angry that they’re slated when they try so hard to make things better for us.
So this is my little shout out to the wonderful staff at QA. Thank you for all that you do. Thank you for taking such wonderful care of my family and thank you for keeping on even in these difficult times. You make a huge difference to families like mine and you are so very appreciated. Thank you. A million times over.
And a giant middle finger (just for good measure) to our government who have created such impossible working conditions for the amazing NHS staff.
Weird thing to say hey ? Tilly is going through a separation anxiety phase and if I’m honest, I’m absolutely bloody thrilled about it. At four years and nine months old, my biggest baby has started howling if I leave her at bedtime and it’s a little bit brilliant…
If you follow me on Facebook or instagram you’ll know we had a reallly magical moment last week when Tilly let me sleep next to her for the first time in four years. It was so wonderful that I cried.
See, since about twelve months old, Tilly hasn’t given much of a shit about me. The baby that was strapped to my chest all day and slept in my arms all night all of a sudden didn’t want me anywhere near her. Ive had to practicality throw her and run away at bedtimes as she hated me being in the room with her. Every mothering instinct in my body wanted to sleep next to my baby and soothe her to sleep, but she didn’t want me anymore. This continued for the next four years. I cannot tell you how difficult it has been to settle her to sleep in hospital, I’ve had to hide in bathrooms and pray she’d go off many many times. Not being able to settle or soothe my child to sleep in unfamiliar and strange places was hard. Really hard.
And yet here I am. Sat on the end of my almost five year olds bed watching her drift off to sleep. It’s taken me two weeks to realise it’s me she wants, quite possibly the last thing I’d ever think of. I darent leave the room as she will scream the house down if I do…. and you know what? It’s bloody magical. I’ve seen her fall asleep a handful of times in the last four years and all of those occasions were due to masses of epilepsy drugs, one general anaesthetic (hell) and one exhausting early morning curled up together in the resus room of the child’s Ward after a night of seizures. Never very happy times.
This is different. This time she wants me here. She finally finds comfort from my presence and wants me to be in her space even if I do keep spoiling it by sobbing (happy tears) loudly.
This summer with Tilly has been wonderful. After a springtime of non stop hospital stays, violence, EEGs, steroids and desperate phone calls to doctors who couldn’t help me… it’s simply magical to finally be what my child needs. I finally feel like she knows I’m her mama again.
Social media has picked up massively in the last decade. You can message, tweet, snap, DM or scroll through your friends various forms of social media at any hour of the day. Friendship is always there, right in your pocket, ready to talk to you.
When I fell pregnant with Tilly back in 2012 I was massively lonely. My friends were still at universities all over the country and I was the only pregnant one. I was desperately lonely and had no idea about pregnancy or babies. I remember googling “how to make friends when you have a baby” in those first few months and eventually I struck gold and found the Bounty forum for those due in October 2012. I had to send a friend request on Facebook and then I’d be added to a secret group. It was very exciting.
That group became my lifeline. I was obsessed. I would ask questions all day, every day and pour every last part of my thoughts into this group of 300ish women. I wasn’t alone anymore. I had found somewhere to belong. The group had its difficulties with a few less than delightful women who were needlessly unkind or seeming to try and scam others. After a year or so things settled down and now, five years later, the ladies in my first due in group are some of my closest friends in the world. I’ve been to weddings and hen dos in Warwickshire, Brighton and The New Forest, various birthday parties and meet ups as far as Cardiff, Manchester and London. I am also in a group from when I was pregnant with Arlo and have lifelong friends from there too.
I have cried rivers of tears for babies lost by women I have never met and I have confided my darkest fears to women I have never met. I’ve even been to the funeral of a woman I have never met. I drove for seven hours to be there and it never even crossed my mind that I hadn’t met her. She was my friend and the grief and loss I felt and still feel was very real. Someone I spoke to most days… of course she was my friend.
So imagine my horror when I was told that my online friends were not real. They felt and looked pretty real to me.
I’ve made a lot of my “IRL” friends online. Only today I went for lunch with a friend I met after she messaged my blog page 😍. I’ve even been a bridesmaid after befriending another friend on instagram 😂. I’m secretly very shy so getting to know people online first helps me to be less of a socially awkward lemon 🍋
So! I asked The Girl Tribe, the Mama Unexpected group (yes you can join Click here ) about online friendships and their feelings on them so here’s a few things I’ve learnt.
As a whole, online friendships are a positive. Most said they tell their online friends things they wouldn’t discuss with their other friends.
Deepest darkest secrets are told to the people in my pocket… I love you all!
Others told me that (like me) online friends made them feel less lonely:
Online friends have been a comfort blanket for me at times when the world has felt incredibly lonely.
And many told me that they felt that their online friends had supported them through difficult times and even went so far as to say that their online friends had saved their lives.
There were a few darker stories, it’s easy to be a bully via a keyboard after all and kind gestures sometimes back fire. I would advise always being cautious.
The main thing I learnt from asking about online friendships was this:
Online Friends ARE Real friends.
I wouldn’t be the mother I am today if it wasn’t for the “people in my pocket”
Thank you ❤
(strong girls club tee is from the epic Muthahood)
Today is a very special day in my family. Today the leader of the pack, my wonderful mum, turns 50.
When my brother and I were growing up, life wasn’t easy for my mum. My dad was away for long deployments and we lived 200 miles away from family down in Plymouth for the first two years of my life, moving back when my brother was a few weeks old. Life wasn’t easy, mum would count the meals in the freezer and go without meals herself to make sure my brother and I were fed.
Eventually we moved to the house my great great grandad built on the seafront and my brother and I had the very best childhood. Full of adventures, running in and out of the sea and always surrounded by the love of our mum. From a very young age, I always knew my mum loved us unconditionally. There isn’t a thing she would not do for her family, friends and even strangers she’s never met. She is a selfless, generous and loving woman. Exactly the type of woman I hope to be.
My teenage years were not easy. Being in an abusive relationship aged seventeen to nineteen turned me into a different person. I was not nice, I was deceitful and I lied a lot. I did things I am not proud of but still my mum was there by my side the entire time. Watching over me and caring me for at my very lowest, nursing me back to health. When the day were at their darkest and I didn’t want to be around anymore, she pulled me out of the darkness and kept me going. I owe her my life.
Countless times, my mum has dropped everything and charged across the country to be at my side. When my friend died at university she was on the next train to Manchester, packed my room up and drove me home the next day. When my husband left me heavily pregnant, she hopped off her boat down in Devon and came straight back. No hesistation, no resentment at ruining her holiday. She came straight back, scooped me and Tilly up and took care of us at her house for a week or so. In times of crisis, I know my mum is coming and that she will be there holding my hand long after the storm has passed.
When I fell pregnant with Tilly very soon into a new relationship, my parents did all that they could to help us. Gave us both jobs, a house and all the support we could’ve needed. Nowadays they pay for Tilly’s extra nursery hours and private therapists, nothing is too much. Last year they sold their lovely apartment to buy and renovate a house that is more suitable for Tilly. I would struggle massively as my delightful husband doesn’t contribute financially to his children’s upbringing at all, but with the help and advice of my parents, we get by and my children want for nothing. It is a blessing.
It’s not all about the material things though of course. My mum is the other parent to my children. She is the best nana in the world. Never too busy to stop everything and play. Forever taking them on adventures and giving them the same love I grew up with. My children are very lucky to have a nana who is so hands on and so much fun. They love her and their grandad so very much. Arlo and grandad have their own dinosaur egg (a rock) in the garden that hatches a new dinosaur every time he goes over there – my children love being at their house, there’s always something fun to do. During the hardest times with Tilly, I am lucky to have my mum by my side to keep on fighting and help me to keep going when I’m tired.
The lion also has a kind side, my mum would do anything for anyone. Christmas at mums house usually involves a few extra guests that had nowhere else to go. There’s always room at the table.
I hope to be the same sort of mum to my children, I hope my children feel the same unconditional love and support that I have grown up surrounded by thanks to my mum. I hope they know I’ll get on that train too and be back in a crisis. I hope they know I’m behind them 100% and feel the same confidence to follow their dreams as I do, thanks to my mum for always believing I could do whatever I put my mind to. There’s no way I’d be starting uni next month without my mum believing that I could.
Happy Birthday Mum. I hope you know just how much we love you.