EILY'S STORY

My name is Eileen but everyone knows me as Eily.

 

I am a mother to two beautiful children, with two beautiful minds, that work in very different ways.​

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I'm here to tell my story and represent other SEN mums, who may have felt just like I have: completely lost and alone. I know I’m not alone in what I experience, but I feel so alone most of the time. I want to help other mums realise they are not the only one and that there is always hope. 

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In 2014 I married my childhood sweet heart in Killarney, Co.Kerry, Ireland. We were very excited to get married and hopefully start a family of our own. I thought it may be challenging for us - I have PCOS and endometriosis - so I was preparing for a long journey to motherhood ahead. However, in 2015, after one laparoscopy, I very fortunately fell pregnant. My pregnancy was normal apart from suffering with migraines, and there were no concerns for baby or me.

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On 4th Feb 2016 - after a Nando's! -  I came home to my mums where we were staying at the time. We were staying there as I, me being me, had organised last minute building work on our house and - with 3 weeks to go till our due date - I thought we had loads of time… how wrong was I!!

I went to the toilet and discovered (what my mum told me) was called the 'Show'. My contractions came very quickly after this, so we rang the hospital who told us to stay at home for as long as possible, to time my contractions and then to come in when I was further along.

So, I sent my husband to bed preparing for a long night ahead. Meanwhile, my contractions just seemed to be all over the place - they were 2 mins long at times and so intense. Eventually my mum (who is fairly experienced after having 5 children of her own!) said 'I think we should go to the hospital'. So we woke my husband up after his 30minute nap(!), and off we went.

I had already decided that I wanted an epidural for the birth, I thought I would be rubbish with the pain and didn’t want it to get to the stage where I wanted it and it was too late.

We arrived at the hospital labour ward where a student midwife greeted us.

"What are you doing here?" 

I said "...I'm having a baby"

- her welcome left much to be desired!

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She examined me and said I was 4cm dilated so might as well go home.

 

Thankfully, my mum was there and said she really felt like it was going to be a quick labour, and eventually after a debate and an assessment from another nurse (who we later found out wasn't very happy because she had toothache), they agreed they would take my blood and that I could wait in the corridor.

They only let me have paracetamol for pain relief, which I knew from suffering with migraines wouldn’t even touch the sides.

 

Fast forward 4 hours of yoga breathing later - which I thought wasn’t going to help at all but actually saved me! - the pain was really starting to worsen and I was desperate for something more. Nobody had been to see me during this time, and as I got up to go and find a nurse, I collapsed to the floor with an almighty pain.

I was so scared, I didn’t know what this was. All I could think is 'if this is the pain that I’ll experience for the next 24/48 hours... I will die'. I was actually repeating to my mum, very dramatically "I'm going to die". I remember in my head screaming at myself 'don’t say that, you'll scare her'. The student midwife came along and asked what was going on. They wanted to lift me up to examine me and, as they did, a gush of water - like the emptying of a paddling pool! -  came flooding through my legs. My waters had broken and they could start to see the head. Putting me on the nearest trolley they could find, they got me to push. I never once got any words of reassurance, comfort or explanation of what was going on. They even told me off for screaming so loudly.

Next thing I knew they couldn’t find baby's heartbeat. They started trying frantically to link a monitor to me, then I was going in and out of consciousness. The midwife didn't seem to know what she was doing and no one was coming to help.

7 hours later, and with just 2 paracetamol in my system, I pushed my baby out.

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They lifted the baby up and I remember saying to my mum "is that my baby?!".

 

I just looked at this poor little bundle that didn’t even look like a baby. She looked like she had been in a boxing match and had lost, badly. Straight away - even though I was in a traumatised state in shock and total disbelief of what I had just been through - I got this almighty feeling of needing to protect my daughter no matter what and that, thankfully, has remained with me ever since.

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Even now as I write this I can still picture everything as if I’m still there; finally being wheeled into an actual room, a nervous nurse attempting my stitches before asking the doctor to help, the numbing cream wearing off, crying silent tears, squeezing my husbands hand, staring into his eyes wishing he could make them stop. Then watching my poor baby being weighed while the student midwife told me how lucky I was.

Just after my stitches had been completed, the midwife in charge said 'I’m really very sorry but we have no beds available, so you'll need to leave once we get your paperwork sorted'.

I couldn’t believe it. This dream that I had in my head since I was a little girl, was just a nightmare with no care what so ever.

Still bleeding, and unsure if I could walk, I managed to shower, collect our paperwork and we all headed home... with our little girl, Sofia.​

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This was the start of our 7 year journey where we have had some incredible highs and some crippling lows.

 

From birth, Sofia’s left eye had been closed and was badly bruised and swollen. Eventually when she could open it there were concerns that she may have a squint. I always felt like I was failing, I just didn’t seem to notice things and simply took her for who she was.

So, we went to the health visitor to get advice on how we could get her eyes checked. They told me there was nothing wrong with her eyes and I 'needed to learn to love them'. I did love my daughters eyes very much(!), but I was now worried something was wrong, so we went privately for a second opinion and Sofia was diagnosed with a squint and given glasses when she was 10months - she has worn them ever since.​

 

I really enjoyed the first few years of Sofia before the worry kicked in. Sofia didn’t move independently till she was 2, she walked on her second birthday. Before this she would just sit and flick through books or play with toys but seemed happy so I didn’t really question it, until at her year check she wasn’t ticking any boxes. Even then, I was so in my own bubble I didn’t really worry. At 15 months she was given a diagnosis of 'Global Delayed Development' - with very little information I was left bewildered.

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Around when Sofia was 16 months old, I started to get pains in my legs every morning. I went to the doctors who sent me for so many physical checks but no one could find anything wrong.

It turned out I had PTSD and my mental health was actually causing physical pain in my body.

In a way I'm grateful it did as it led me to therapy. I truly believe all women should have therapy after having any sort of trauma at birth - no matter how minor it may seem. I had CBT and I fear without that I would have become extremely unwell due to the impact the birth had on me mentally. The therapy also enabled me to enjoy motherhood more. Before I would dread getting up everyday but had become so used to that feeling, I thought it was normal. I just wanted everything to be so perfect and I couldn’t get it to be, so felt I was failing at the one job I thought I would be so good at. No one around me noticed as I did a good job of hiding it all. Once I was up, I was like a hamster on a wheel - I was doing it all on the outside, but on the inside I was crumbling.

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In one part of my CBT I had to go through the birth in my head from start to finish whilst the therapist waved her hand back and forth across my eyes. It’s meant to help 'file the memory away' because in a traumatic situation your body freezes and the event can’t be processed or stored, so can be triggered at anytime.

When I reached the memory of the student midwife opening the door and saying why are you here? I suddenly got transported back to my year 3 classroom, sat at my desk crying. I remembered it as vividly as if I was there. The night before I'd worked really hard with my mum on learning my spellings and we were sure I was going to get 10 out of 10. Unfortunately, I didn’t, so I burst into tears. The class asked the teacher why I was crying and the teacher replied 'because she is a silly little girl'. The therapist asked me how the midwife had made me feel, I said 'like a silly little girl'. It is incredible how the body and mind retain these feelings, which Is why I was always striving so much to achieve perfection for Sofia.

 

I was always so worried about how she was treated, and how that would affect her in the future.

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We were so fortunate when it came to nursery, Sofia had no verbal communication but we found a place that cared and nurtured for her in abundance.

Then, the time came time to choose a school. We looked around all of the specialist provisions alongside mainstream and we fell in love with a small catholic school where Sofia's cousins were already going.  We got the funding ourselves for a 1-2-1 with her 5 days a week and the school welcomed us with open arms - and even said that if she was still in nappies they could meet her needs. Sofia was actually really good at potty training (which amazed me as I had prepared myself for it to go very wrong) and she started at the school.

We were like most parents I guess; excited, nervous, all the emotions - but with Sofia only being able to say about 20 words it added to the layers of worry.

Unfortunately, we got off to a bad start. Sofia came home a couple of times with number 2’s on her dress and then on one day she was covered in wee, her shoes were soaked and her teacher let it slip she had been like this this since lunch time. I voiced my concerns to the SENCO who really seemed to take it onboard. In fact, a week later, I had a follow up meeting and was looking forward to voicing how happy I was with everything. However, the SENCO suddenly said she was going to get Sofia assessed for Autism as 'all children with GDD will end up Autistic'.

It was said in the most insensitive way, and I left the school crying and in shock. I was exposed to their lack of empathy and understanding.

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My daughter then started pulling other children's hair due to her sensory needs not being met. It was having such a heartbreaking impact on Sofia - she was crying each night before she went to sleep asking if she 'could wear gloves to stop herself from hurting her friends'.

So, we asked if a therapist we knew could help: the school agreed to her going in. Unfortunately she reported something back to us, stating that the SENCO had spoken incorrectly to Sofia. I didn't say anything to the school at the time - that's how much I wanted to make it work with them - but a week later the SENCO rang me. She was giving an extremely negative report about Sofia to me when I heard a little voice in the background say ‘Who’s that on the phone?” To which she replied “It’s your mummy”. That whole time Sofia had been stood in her office listening and it was only because she spoke that I learnt that she was in the room. 

I rang the head to make a complaint - which I now wish I had made in writing - and following that our therapist was never allowed in again.

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Our relationship with the school was broken.

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The parents and children in Sofia’s class were why we stayed so long. They were incredible, the best people I have ever come across and I will forever be grateful to them for their support, care and understanding. Not only to us as a family, but especially Sofia.

 

By the end of year 1 we knew we couldn’t stay and continue working with the headteacher and SENCO anymore, so, we started looking at alternative places.  Sofia started back in year 2 at this school, but  on the 28th November we had a meeting booked with the local authority to say we wanted to leave.

 

On the 10th November, while entering school, Sofia pulled the hair of another girl in another class. I took the mother aside to explain our story and said we were leaving the school.

The following Monday after that, we were phoned by the head to say a formal complaint had been made and the parents wanted it to be shared with us.

Sofia was going to be internally excluded and not allowed back into her classroom. She would have to be dropped off and collected at different times from the other children - effective immediately. We were in complete shock. Even more so when we read the letter of complaint that said our 6 year old daughter had displayed 'life threatening behaviour with malicious intent'. We were offered three options: the first was for her to be sent to a school which (when I rang the SENCO to find out more) they said 'was a school for children who had been abused physically and mentally' (it would have been severely detrimental to send her there); the second option was a managed move where the head rang the other Catholic schools who all refused her; and our 3rd and final option - if we didn’t accept the first two - was permanent exclusion, which the head said, if they were backed into a corner, they would do.

 

We contacted 30 schools, went to see over 15 and couldn’t find a space for our daughter anywhere. If permanent exclusion had gone on her record no other specialist school would take her. This would affect her whole future.

In the interim, our 6 year old daughter - who already suffered with anxiety - was put into a room with 2 adults (one who she didn’t know at all) for a total of 25 days,

She could see her school friends through the window, going to their nativity plays, in the yard for break times and she could only watch and hear the laughter from the room. She was never allowed to go back into her classroom, not even to say goodbye.

 

We were eventually offered an EOTS (Education Other Than School) package where she would be educated from home until a place was found, as the Head of Education found out what was happening and put a stop to it. During this time we were also caring for a very close family member who we were giving end of life care to. It felt like a nightmare. We seemed to have no control over our daughters life or future.

Sofia has since asked to drive past the school so she could say goodbye to her school and friends. She has also asked if she could go back to her friends and asked me 'did the school not want me mummy because I hurt people?'. I couldn’t believe that she had come up with this all by herself, we never explained it like this to her and instead said 'we didn’t feel her school always understood her and we wanted to find her a school that did'. She followed it up by saying 'I really don’t want to hurt anyone, I just want to be with my friends'.

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How could you treat a child like this? Even as I rewrite our story I still can’t believe all of that happened to us.

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Sofia is now in a school provision, after being home educated for 4 months. She  has a primary diagnosis of a language disorder and moderate learning disability due to the left side of her brain being damaged at birth. We still have no idea if she lost oxygen during my labour or stopped breathing at any stage as we weren’t connected to anything, but, sadly, this is suspected to be the reason for some of her needs.

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Last summer she was diagnosed with Autism. In April this year I completed the London Marathon running along side my husband for the National Autistic Society but, more importantly, for Sofia.  It was so out of my comfort zone, I am not a runner, but we felt it was the perfect way to draw a line under all we had been through as a family and to start afresh. It was a true privilege and a gift to do this for our girl.

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More recently she has been assessed in her current setting and it has confirmed our instinct that it isn't the right environment for her either. Cognitively she is at a different level and she doesn’t have a peer group to help bring her on socially. This is exactly what we had tried to explain to the local authority, but they just wanted to get her to take the place.

 

So we are back to her being in the wrong place again, the only difference this time is she is so well cared for and looked after - which, after what we have experienced, is all we want for her.

At the same time, however, she deserves everything that all children are entitled to. But where do we go from here? I don’t know.

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Mainstream isn’t for her, mainstream with a provision isn’t right and the specialist schools have a list of criteria to meet so you don’t know if they will accept her, and even then you have to fight the Local Authority to fund it!

 

I really believe a change needs to happen sooner rather than later.

 

Devastatingly our story is not uncommon and it seems this is happening to so many children. They're being forced out of mainstream with no suitable school to go to and spaces in appropriate schools are already at capacity. Parents are having to home school, which should always be a choice - not a 'have to'. It's just not good enough. Mainstream schools need to be set up to be able to cater for the 'grey area children'.  Children should never be made to feel 'naughty' and rejected because, without a doubt, later down the line their mental health is going to suffer from the (avoidable) mistreatment of them in school.

It isn’t fair on the family's or individuals, when mainstream schools welcome them with open arms, only to push them out when the going gets tough.

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I want to raise more awareness of the lack of care in the system for SEN families.

I want to represent the underrepresented Mama's of the SEN world who get up and face each day, not knowing what the day will bring, but knowing it will be probably be challenging, yet hopefully rewarding.

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Sofia has Physical Behaviour - or 'Physical Communications' as we like to call it. She also has melt downs and going out (or staying in!) can be a challenge. Everyday is unpredictable, but what isn’t unpredictable is our constant love for her. I see this love in all the SEN parents I have met.

I also see the same exhaustion in them, but it isn’t because of our kids. It is because we have to put so much more into parenting than your average parent, that our tanks are full to capacity. Then, on top of that, we are expected to have the energy, time and strength to fight for what our children need. This needs to change. Our kids need us to be the best we can be to meet their needs, to have the patience to look past behaviours and have the reserves to provide them with the love and care they need in these moments. 

But when you are stressed, worn out and angry at a system that is against you, being a patient parent is a nye on impossible task. You end up in burn out and that is what happened to me. I gave everything for months and eventually my body crashed. If it wasn't for the support of my family and friends I don’t know where we would be.

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My beacon of hope is that we have Sofia. Looking back I could so easily have lost her.

We couldn’t love her any more than we do and I will do everything in my power to give her every opportunity that she is entitled to and the life that she deserves. The system is so broken for children with needs, but especially for children in the 'grey area' who can’t always cope in mainstream but who are lost in a complex need provision, unable to improve on socials skills, make friendships and belong.

 

Every single child deserves an education, and to be treated like a human - not a problem.

I believe a school does exist for Sofia that can meet her needs, where she can flourish and I won’t stop until I find that for her.

 

We simply went to have a baby, were left in a corridor and now my daughter has needs.

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You would think she would get all the help she could being so let down at the start of her life through no fault of her own. But it feels as if we did something wrong and now keep getting punished.

I just want help and support so that my child can access and enjoy the world she has been born into, she deserves nothing less and I will never give up on this.

 

Having a child with SEN has given me a strength that I never had before and, if nothing else, that's been a huge positive in my life.

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To any SEN parent who finds themself in a position like us ours: fight for what is right, jump up and down and contact every authority you can. We should have fought earlier but we were too worried about doing the wrong thing and that affecting Sofia’s future. When the fact is: she was being wronged and that wasn’t right. 

 

My message for fellow SEN Mama's is: you are not alone, there is always hope, and keep going because you are more than enough.​

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If you are a fellow SEN parent, or someone that this story resonates with, do check out Eily's instagram support page @beautifulminds_differentways which is an incredible initiative, bringing together SEN parents and spreading light when you need it most in those dark moments. Alternatively you could pop into their family run business - @sw9_coffee - for a cuppa & pastry!