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Who Cares? We Care

This month we are showcasing some of the supportive communities in our network, all of which offer so much to families in the UK.  Our second blog for this month comes from Lynne Barton of Entrust Care Partnership.

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In 2013 our organisation was set up as a response to the aspirations expressed by families caring for children, young people and adults with disabilities, additional or specific needs. People told us that they wanted services which they could trust, which were flexible and demonstrated a warmth for those closest to them, and our three Directors all have a wealth of experience in this field. All the money that we raise provides direct services for the benefit of disabled children, young people, adults, and families.

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Our regular activities include a Toddler Group in Harbury, Leamington for parents and carers and children under 5 years old; Play & Stay sessions to bring together parents and carers whose child has recently received a diagnosis or identification of a disability or additional need.  We hold these in local Children’s Centres; Disability Awareness training that we hold in partnership with Family Voice Warwickshire – provided to professionals across the UK; a Life Skills Group for young adults with disabilities to support them to fulfil their goals and aspirations; Let’s Get Healthy sessions covering physical activity and healthy eating during school and college holiday periods.

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You can see weekly updates about our groups and activities, including the Open Door Café in Hampton Magna – on our Facebook page.

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In addition to all of this, we have been particularly busy this summer with events and workshops. Our Who Cares? We Care sessions have been so well received, topics have included Sleep & Self Care and Healthy Living 24/7.

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In June we hosted a music festival aimed at young people over twelve years old, and then in July we held our Celebrating Children event.  This was a celebration of the lives disabled children, their siblings and parents, their contribution to our society and the joy they bring to everyone.

It was a joyful celebration of children whatever their ability and an opportunity to applaud all parents and carers for the fabulous care they give 24/7. It felt like a family party relaxed, chilled and no one worrying about saying to their child “don’t do that”, described as a freedom perhaps not found elsewhere.

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We have also been able to hold workshops with Aimee Mann on the topic of Getting Your Voice Heard – How To Be A Velvet Bulldozer.  A parental perspective on building emotional resilience.

Some of the families that we support have kindly shared with us their experiences:

“Entrust Care Partnership are an incredible organisation who genuinely know how to reach out to families of children with additional needs. As a carer I have personally benefited from one of their training courses which was superb and I have attended two of their events for families which were exceptionally organised. They understand the challenges parents face and tailor their courses to empower them to meet these head on. Their events are innovative, child focused and peaceful allowing parents to relax and children to have fun.”

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“When my youngest child was born, it was a hectic time with three small children under the age of four. Especially as my oldest has special needs. My husband’s job meant it wasn’t possible for him to be around much at crucial times of day. Evenings were particularly challenging for me so Entrust Care Partnership came to the rescue. They provided me with support from a volunteer to spend time with my son and at times my little girl too. It gave me the chance to get their tea and breastfeed my newborn with the knowledge and comfort that my eldest was safe and engaged. It was a life saver.”

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Please do follow us on Facebook for information about our regular Coffee & Chat sessions, all of our workshops and events.

 

Lynne Barton

July 2018

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Forging Families

This July we are so thrilled to be able to showcase some of the supportive communities in our network, all of which offer so much to families in the UK.  Our first blog for this month comes from Rachel Ellie Gardner, the founder of Forging Families.

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Six years ago I became chair of Sheffield MSLC – Maternity Services Liaison Committee. We did some great work together with The Jessop’s Wing, the Health Visiting Team, Public Health and LIGHT. Our work was mainly focused on Maternal Mental Health. We had amazing support from the families of Sheffield and soon became a force to be reckoned with. The main work we did was through our surveys, which had an average response of 1,400 Sheffield people. The voices of Sheffield families were listened to at each turn and changes were put into place by Public Health, The Jessop’s Wing, Health Visiting Team and all involved in maternal mental health. The biggest change we helped achieve was helping to create a Maternal Mental Pathway for all Health Care Professionals and for mums, we were very proud to be a part of this. Another huge achievement was having our first ever poster, made with the voices of over one hundred woman and then put together by a sub-committee of ten women, put in the Sheffield Red Book. The poster was called ‘Debunking Myths’ and proved very popular with mums.

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Two years ago the women in our MSLC group came up with the idea of putting together a video showing women and men who had struggled with their mental health during the perinatal (pregnancy, birth and the first year) period, but come through the other side to give hope and inspiration to families who were currently struggling.

The Clinical Commissioning Group were delighted with this idea but money was very tight that year and there was a possibility that the MSLC would have no funding at all. This was devastating to me and after two days of being deeply sad that our powerful work was going to stop I decided to do something about it. I turned to our mums on our facebook group and told them of our situation. I was contacted within the hour by a wonderful lady who told us of possible external funding if we became a charity. I immediately said “yes yes yes.”

The first step for me was talking to the mums and dads about this new idea of becoming a charity and we ended up all agreeing that this was a phenomenal idea. The fabulous Jodie Booth came up with the name ‘Forging Families’ – a name that immediately embodied our steel city but also that of strengthening and building up families. The name was perfect.

Then began the very, very long process of becoming a CIO – a Charitable Incorporated Organisation. After a huge amount of stress (that was mostly caused by my inability to follow simple instructions) and then the help and support of Sarah Birch we finally became a CIO.

We became Forging Families on the 3rd October 2016. I searched for the very best of trustees, Laura Watkins, Rachel Siviter, Rosie Knowles, Sarah Birch, Lizzie Rolls, Laura Neasmith, Alice Farina, Louis Randall, Jodie Booth and Roxie Marshall.

We were given £7,000 from the Kathleen Hannay Memorial Fund to do two pieces of work and we were ready to start. Over time our trustees changed and Sarah Birch became a charity officer within the charity. Rosie Knowles changed from being a trustee to being our attachment adviser and we have lots of work to do together. Very sadly Jodie left as our Chair due to personal reasons and Roxie Marshall left due to time pressures.

We still have our core group with Sarah Birch leaving as charity officer and becoming Chair and us inviting Sam Bennett to be our Treasurer.

The team was all set. I was the CEO, which is the fancy name for Lead of Forging Families and I love Forging Families and am deeply proud of the work I have done for Forging Families.

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Rachel Ellie Gardner, CEO Forging Families

We quickly became known for our posters and in following our original ‘Debunking Myths’ poster, the majority of our posters were written with the words from our mums and dads to other mums and dads. Our posters give advice, a community feel, an idea of going back to raising children ‘as a village’ and we have made over 50 posters for our families. You can find them on our Facebook page or on our website.

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Our work quickly became much more than the two pieces of work we had started with and within a year we had worked closely with the Clinical Commisioning Group and Public Health to help improve services. We also had several of our posters used within the Royal College of General Practitioners mental health section.

We focused on our posters giving advice and hope and we did our Forging Families videos of mums and dad mental health.

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Since then we have had an astoundingly successful conference in February 2018 regarding maternal and paternal mental health and well-being. The conference had both excellent speakers and also workshops in the afternoon to get professionals and families together to share ideas on common themes.

In summary, our objectives are to promote and preserve good health among parents and children living in Sheffield and the surrounding area, in particular but not exclusively by:

a) Providing information, advice, support and a signposting service to parents during pregnancy, childbirth, the postnatal period and early parenthood.

b) Working with statutory bodies and healthcare professionals to assist in improvement in the provision of maternity and maternity-related health services.

You can read more about our current projects on our website, including our Dads to Dads website, and work with families from ethnic minorities.

We are extremely honoured to be giving a video presentation of our research into the maternal mental health of ethnic minority women in Sheffield at the international conference ‘From Birth to Health – Towards Sustainable Childbirth’ in Lisbon this September.  This is being done in collaboration with the wonderful professors at Sheffield Hallam University.

Forging Families shouts with the voice of hundreds and hundreds of parents to help shape changes in the maternity services of Sheffield.  Please do get in touch if you would like to be involved!

 

Rachel Ellie Gardner

July 2018

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When it wasn’t okay was whenever I needed support

Lauren has kindly shared with us her experience of an emotionally abusive relationship, and continuing to parent with her ex-husband now they are no longer together.  The names of Lauren, her husband and their daughter have all been changed to protect their privacy.

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I was 22 when I got together with Tim, he was 24.  We got engaged after about 9 months and were married within two and a half years.

Looking back the signs were there that something wasn’t right even before we got married.

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We had a lot of fun when we got together, going out and doing things together, but it didn’t translate into real life for us.  From early on he reacted strangely to things and was unreasonable, and there was a lot of shouting and big arguments. Once we got engaged I felt that I had committed to something so I had to see it through.  But whenever we had arguments after our engagement he always used to say “if we weren’t engaged I’d leave you”. That still affects me now in my relationships.

He always told me I was unreasonable, that I should be on my own, that I was too independent.

The threat to leave me was always there. I don’t now believe he ever would have left, he was shell-shocked when I finally left him. Probably because he’d done the groundwork to make it so that I had no confidence. Once I’d had Grace he’d say “you can’t leave because nobody would want you and another man’s child”.

Before we got married I think I just accepted his behaviour as I’d made my bed and I had to lie in it. Which is absolute nonsense looking back! But as soon as the arguments were over he’d click into being normal so I almost had to keep up. We didn’t really deal with it or stop and think because as quickly as it happened it went back to normal. It was quite unbalancing. He could sulk forever and it would always be my fault. But as soon as he had decided the argument was over he’d click back into normal and then if I carried it on it was my fault.

He did a lot for me around the house, and he’d say “I do all of this for you, I make the house nice for you.” He displayed a lot of characteristics that are typical of abusers. I now know what the typical traits are and it’s scary, it’s almost scripted. I don’t know if it’s a certain personality type. I don’t fully understand that. In his head it was justified – he was doing these things around the house for me and he’d expect certain things to be done. He would expect dinner to be cooked and my fair share of the cleaning to be done when he felt it was meant to be done. If he was mowing the lawn he’d tell me I was lazy if I was sat down. It wasn’t my choice when I hoovered and when I sat down and relaxed. It was all his timescales and his rules.

I worked away for most of our relationship which diluted things. The weekends would be horrible and full of arguments, or they’d be great. Even if it was bad I’d be out of the situation again after two days. Holidays were never fulfilling or relaxing. We’d never really want to do the same things – looking back I just clearly wasn’t with the right person. Things around friends and socialising were always a big deal. We had an argument once and we were meant to be going to a friend’s child’s birthday party. I had to go on my own because it was my “punishment” that he wasn’t going to come with me because I had behaved badly.

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He held me back in terms of my career, he didn’t want me to take risks and there were certain roles I would have taken but he just would never have supported me. It’s sad. But when I got pregnant he was pleased and quite protective. It wasn’t a planned pregnancy but it wasn’t an “accident” either. He was a bit funny about me taking a pregnancy test so I did it on my own but he was pleased when I told him it was positive. He hardly came to any of my pregnancy appointments with me though – work was always more important than anything else. We met at work and I knew the company he worked for, there were no issues there, they would not have been difficult about him attending.

I had hyperemesis gravidarum (HG) when I was pregnant and was signed off work for 2 months. I didn’t get admitted to hospital but it was very close.  I had a few issues with bleeding too.  Very early in the pregnancy I was working away and I started bleeding, so I had to go to the hospital up there and he was like “oh you’ll be fine won’t you”. It was horrible. Now I would expect a partner to drive the 2 ½ hours up there to be with me.

We did go to one midwife appointment together and the midwife was very concerned about me as I was very sick and kind of out of it.  Tim just said to me “oh you’re so embarrassing”. He’d been trying to push me to go back to work as he was worried it would affect my promotion and pay rises and the midwife made it clear I should not be going back to work for some time.

I ended up in A&E at one point because I was passing big clots, and I was sick with HG until 16 weeks. On the way back from the 12 week scan he was saying to me “you need to get back to work, you are not taking any more time off” even though I was signed off. I was sitting in the car crying not knowing what to do. My work were so flexible and so good and I didn’t go back to work, but I had to argue my point.

In the middle of all of this we went down south for my brother’s birthday and I was sick but doing okay. We went out for a meal and he fell out with me over such a small thing.  Everyone got out of their cars in the car park, everyone was waiting around, Tim had to go back to the car to get his coat and I started walking off with the others.  Well he said I should have waited for him and we fell out, he wouldn’t speak to anybody, wouldn’t speak to anyone for the whole day. I was still feeling pretty rubbish at this point, hadn’t eaten much, had been sick in the toilets a few times. We were driving back up the motorway and he was having a go at me and I didn’t have the energy. I said something about his family during the argument and he picked up the Sat Nav and threw it at me. He screeched into a services, screeched round really really fast and just sped back out onto the motorway, just to scare me. And then there was just shouting when we got home.

We had a trip to Las Vegas planned with some friends when I was 22 weeks pregnant.  On the flight to Vegas one of the friends made a comment about gambling, and Tim had gambled in the past, so I made a comment about not going too crazy in Vegas. He told me he was going to leave me when we got home because I’d embarrassed him in front of his friends, he was telling me he could do what he wanted, he was on holiday. At that point it didn’t even upset me that much, by then I didn’t even want to be with him. I was wondering the whole holiday if he would leave me when we got back. I ended up in hospital in Vegas because I had some contractions and he made comments about the insurance, but he didn’t leave me when we got back, things just went back to normal. I was getting more pregnant and it just wasn’t that straightforward to walk out.

I went to the rest of my maternity appointments on my own and at that point I started to become more independent and more self sufficient. I was back at work and did the antenatal things by myself.

Tim was really good during my labour, but then afterwards he could have stayed overnight with me and Grace but he didn’t. He was very critical of my parents as they didn’t come up until about 10 hours after I had Grace – it was very important to him to have his parents there as soon as they could be. It wasn’t my choice about visitors and stuff like that.

At 4 weeks postpartum I passed big clots at home and the midwife said it was normal so Tim didn’t think I needed to go to the doctors, but I passed big clots again the next day. Then I was feeding Grace on the sofa, I felt something in my stomach, stood up, and blood hit the floor. My jogging bottoms could be wrung out, my slippers could be drained of blood. I just stood there and fortunately Tim got back from a run after a few minutes. We didn’t go to hospital that night because the midwife had already said to monitor it, and we had a scan booked in for the next day.

Tim wasn’t going to take time off work, so I took my 4 week old baby to the hospital the next day and had the ultrasound on my own. They wanted to admit me because they’d found I had retained placenta. They put me and Grace in a room and Tim said he’d come over once he’d finished work in a few hours. I had nurses holding Grace while other nurses dealt with me, and he was saying he was just having his dinner then he’d come over….. He turned up eventually. They told me I’d be first in for the operation in the morning. They found me a private room because Grace was exclusively breastfed, but then Tim said I don’t want you staying here, I don’t want her staying here, but I’m not looking after her on my own. He made me discharge myself. My Mum came up that night. I had to be back in for 6am the next day. He begrudgingly took a day off work to look after Grace and Mum came into hospital with me. I got prepped for the operation, and then went into anaphylactic shock from one of the drugs they had given me. My Mum rang him to tell him and Tim was like “why are you ringing me to tell me this, I don’t need to know. I’m looking after the baby.” No emotion at all. He commented to me afterwards asking why she phoned him “what could I do, I didn’t need to know”.

At some point during this period I remember I got blood on the back of the car and he complained about that. Grace was sick on him and he was fussing about that. The whole thing was just an inconvenience for him.

Grace was Christened at 6 or 7 months, it had to be in abroad, it couldn’t be where my family lived.  I had lost all fight at this point. It was a big show for his family. We had a big argument that weekend and I remember telling his mum I didn’t want to be with him anymore. She knows he’s difficult and she understood but she just said it would calm down and things would be fine.

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Refuge Against Domestic Violence

I was surviving and coping and was parenting independently so it felt like it was okay. When it wasn’t okay was whenever I needed support. If ever I came home and complained about work he’d say “well I can understand why you’d be having problems at work if you behave there like you do at home.” At the time I didn’t recognise it but retrospectively my confidence was low.  I was really unhappy at work but he told me it was my fault because I was difficult to deal with.

At 15 months old Grace’s behaviour got really bad – she was biting and being really challenging. Tim had no patience with her. At around 18 months she started being protective of me and would shout “no Daddy, get away from Mummy!” if he came near me. She was okay with him going near her, but if she was with me she’d cry if he came anywhere near us. When she’d see him walk up the drive after work she’d start saying “Mummy, Mummy Daddy’s home” in a worried tone, and if he came up to me she’d say “No”.  He threw stuff at me but he never hit me. Grace had never seen that, but she’d seen his aggression towards me.

There was one particular time when Grace had bitten a child at Nursery, it had been dealt with during the day, but he took her off me when he got home and said “I hear you’ve been a horrible little girl”.  He took her out of the living room, sat her on the bottom step and started shouting at her that she was horrible. She was pleased to see him but then she was sat there making no noise with tears rolling down her cheeks and he just walked off saying “I don’t want to see you again”. I went and got her.

That was the moment when I thought “game over, I don’t want to be with this man.” I told my Mum and Dad that it was over.

This was April / May time. We had a holiday booked with his parents in the September and in my head I couldn’t let anyone down who’d paid for a holiday, so I stuck it out until then. As soon as we got back from that holiday I moved into the spare bedroom. He told me I was mentally ill, I was just going through a phase, it was my parents’ fault…. Most people would have left at that point but I didn’t want to take Grace away to where my Mum and Dad live, I was concerned about my job, so I wanted to plan and not have temporary stuff. At the time I left I wanted to be out and safe and sorted. He says I left with military precision. He would threaten to leave, he was a desperate man at that point because all of his normal tactics were no longer working. He was almost defeated.

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I was signed off work for 6 weeks after the holiday with his parents and started seeing a counsellor.  I spoke to my GP about it all and they referred me to local services. I was assigned a support worker through Barnardo’s and she was excellent, and I also spoke to Women’s Aid. They all reaffirmed that Tim’s behaviour was abusive.

Tim knew I was leaving him but not exactly when. He went to work, my Mum and Dad drove up, I packed my things and moved into rented accommodation that I’d already signed for. There was a police flag on the house that my support worker had set up for me.

The first night in the new house Grace slept through in her own bedroom which she’d never done, and she never bit anyone again.

Co-parenting now we’re divorced

Parenting with Tim now isn’t too bad, it’s easier than when we were together for sure.  I haven’t got anybody questioning me.  I can do what I want, I do it how I want to do it, sometimes I have no idea what I’m doing, but that’s okay, there’s nobody judging me.

I very much take the lead, and he lets me now, which isn’t typical of abusive men. It’s been very interesting because he hasn’t behaved typically from the point that I left him. I think that’s partly because of how I behaved, because at the point where I left I was absolutely terrified for a few months, and it still sends me into a bit of a panic when he does try to dominate me, but I was very very forceful and it was very clear in my mind what was acceptable, who I answered to…. I changed. It was me that changed. The boundaries and the ground rules were very clear from me, I was adamant and steadfast.

He challenged me a lot of the time, I got long text messages, threats, but because he got no reaction and nothing back it stopped. Every now and again he will try and assert himself if he doesn’t like something, but I’ve kind of worked out the triggers for that behaviour in him. I can recognise when it’s him reacting to a trigger. So I can sort of then manage him. The only way I’ve been able to do that was because I became so emotionally detached from it all.

He is still part of our family and he always will be. I care about him and I would like to see him happy. I would never ever want to be with him again, but I have no issues with him being in the house, me being in his house, it’s fine. It’s comfortable in many ways.

The effect on my subsequent relationships

At first I wanted something quite distant but comfortable – comfort at arm’s length.  But my second relationship after Tim was different instantly, and I wanted a proper relationship. I was so so insecure and still am up to a point. I am beginning to be able to rationalise my thoughts. I’m on Fluoxetine and that seems to be helping. But I keep asking myself why would he want to be with me? Am I a burden? I’ve got baggage. Is he going to change his mind? He’d be here in my house and I’d be thinking he was changing his mind about me. That caused problems because it’s not really my personality and it’s a lot of pressure to put on somebody. At a certain point it’s what more can he do to make me feel secure??

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I am very cautious and I have a huge fear of him leaving. But it is getting better.  He makes me happy, he is there when I need him.  I love him and he loves me.  It is difficult at times but I now know it can work out and there are decent guys out there waiting for us.

 

June 2018.

 

Some useful links:

What is emotional abuse?

Am I in an abusive relationship?

Recognising abuse

National Domestic Violence Helpline – 0808 2000 247

 

Your power is yours to keep

Huge thanks to this lovely birth worker who has shared her story with us as part of our focus on surviving domestic abuse.

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The end of June marks a year since I moved out of the home I shared with my abuser. Learning to be independent with two young children for the first time in my adult life has been incredibly hard, but choosing a life that meant I could feel free and in control has been the best decision I’ve ever made.

When a friend of mine first pointed out that she was seeing abusive behaviour in my relationship, I was shocked and speechless. Part of me wanted her to be wrong, after all he had never hit me, he didn’t threaten me or act aggressively towards me, he said he loved me and I loved him. The other part of me felt relieved. Relieved that there was someone who didn’t think I was crazy, someone who wanted to support me to finally voice my truth.

I met my ex when I was just 14. He was 21. Our age difference should have been the first red flag I saw, but at the time, I had a difficult relationship with my parents and had recently been sexually abused by my previous boyfriend. I was young and vulnerable and he took advantage of that at every opportunity. In the wise words of Maya Angelou,

“When someone shows you who they are, believe them the first time.”

I still wish that the people around me back then had helped me to see who he really was, because in hindsight it was plain to see.

The abuse I endured over the next 12 years was not overt. Instead it was subtle and insidious, and for the majority of the time I had no idea what he was doing to me. As an ardent feminist, I never imagined that I would find myself in an abusive relationship but he uncut any shred of confidence and self-love I had and replaced it with confusion about my value, self-worth and mental health.

He made me feel as though all the issues we had in our lives were my fault so I never even considered that he was the root cause of my pain. When he took loans out in my name and made me feel like I had to ask for permission to spend our money, I didn’t call it financial abuse. When his words made me doubt my own sanity, I didn’t call it gaslighting. When he silenced me by continually speaking over me and twisting my words, I didn’t call it manipulation. When I wasn’t able to work because his needs always took priority, I didn’t call it controlling.  When he coerced me into having sex, I didn’t call it rape. Choosing to finally give voice to my reality and accept that the man I loved had been continually hurting and manipulating me was so painful and terrifying but if I wanted things to be different, it was the first step I needed to take towards positive change.

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I knew that I had to leave but there were so many hurdles along the way. My children were just 2 and 4, I had no money of my own and at the time, my work as a birthworker was not providing enough money to sustain me independently. I struggled to find somewhere else to live that didn’t involve me and the children moving into a refuge and I was constantly scared that he would try to take them away from me. Sometimes I wondered if he could change. If things could be different wouldn’t it be easier to just stay with him? Deep down though I knew that people like him rarely change for good.

The key in being able to hold on to my truth and finally move out was finding the right support. I had some amazing friends who were there to remind me how strong and capable I was and what my life would looked like if I stayed. I had a counsellor who was an amazing emotional support throughout. I had family who were able to help me out financially and with the practical aspects of moving house. I reached out to Women’s Aid and saw my GP who referred me to a support worker with IRIS.

The last year has been challenging in so many ways; learning to be solely responsible for managing a household, learning to parent alone, learning to balance work and family life as a self employed single parent, learning to live with C-PTSD, learning to find healing, build my self worth and start loving myself again. Whilst it’s been a difficult journey, I am beginning to live the life I know I deserve, where I can keep hold of my power and feel safe and supported.

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To anyone who is walking this path, you are strong and worthy of so much more. You are a whole person who has the right to be heard and loved, just as you are. Right now you might feel trapped and out of options but your power is yours to keep and you have everything you need within yourself to live the life you deserve.

I write my story anonymously but if anyone reads this and wants to talk to someone who understands, I am here and happy to be contacted through Growing Families. I hope that by sharing my story, I can show women who might be in a similar position to where I was last year that there is light at the end of what seems like the darkest of tunnels.

Much love, L x

2018

 

Some charities that I found useful:

24 Hour National Domestic Violence Helpline
0808 2000 247
This is run by Women’s Aid and Refuge and was so helpful when I needed to speak to someone out of hours.

Women’s Aid Manchester
0161 660 7999 (Monday to Friday 9:30am – 4:30pm)
You are able to self-refer to Women’s Aid and get assigned a caseworker who can support you throughout.

Gingerbread
0808 802 0925
This charity works to support single parents and the information they give is super helpful. The have lots of factsheets on their website about everything from benefits to contact arrangements and the people that run their helpine are very knowledgeable.

How Slings helped me to recover from Postnatal Depression

Our thanks to Ellie Thouret of the Cheshire Parenting Collective for this piece on babywearing and perinatal mental health.  We didn’t get a chance to share this post during our month of focusing on PNMH in April, but felt it was an important perspective so are delighted to include it now.

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When my eldest son was born almost six years ago, I suddenly realised that I wasn’t cut out for motherhood. I had a traumatic birth experience and struggled with breastfeeding, and quite frankly I wanted to curl up and sleep for a week. It took a long time to ask for help and receive a diagnosis of postnatal depression and post-traumatic stress disorder, but looking back it’s clear that the signs were there very early on.

Our tiny baby wanted us to hold him all of the time. He was what some people call a ‘Velcro baby’ but in my experience it is just normal newborn behaviour. I didn’t bond with him for quite a long time, and that made me feel even less competent. Every time I looked at him, I felt a crushing pressure that seemed more and more difficult to live up to.

When my husband went back to work two weeks after our son was born, I felt like the walls were closing in. I knew I needed to get out and find some support, but my son seemed to really hate the pram and car seat. I couldn’t even brush my teeth without him screaming to be picked up. I felt like I was losing myself and my sanity along with it. I didn’t really want to be holding my baby all the time, as it just reminded me how incompetent I felt.

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I can pinpoint the exact moment that things started to change: my husband’s cousin asked me if I had thought about using a sling, and offered to lend me her stretchy wrap. Watching my sister-in-law demonstrate how to tie it, I was very sceptical and didn’t think I’d be able to do it, or enjoy holding my son so close. I was desperate, though, and after watching a few instructional videos I gave it a try. He calmed down immediately and snuggled into my chest. It was the first moment I felt like I might be able to mother him after all.

Carrying my son with me in a sling helped him to settle down, which in turn increased my confidence in my ability to meet his needs. I also started to bond with him, and as I looked down at his sleeping face I finally felt the rush of love I’d been waiting for.

Soon, I even ventured outside with the stretchy wrap and being able to walk to the local breastfeeding groups or just wander around helped me to feel better. I moved on from the stretchy to a gauze wrap, which was great in warm weather; then a buckled carrier; and more wraps. I also met other people who were interested in using slings and carriers, and some of us formed a group which eventually became a sling meet and lending library – my stepping stones on the way to setting up Cheshire Parenting Collective.

My recovery from postnatal depression was a long journey, and our rocky start has stayed with me as my son grows up. I still feel a lot of guilt about how I was during his early months, but I also know that even when I didn’t feel a connection with him, I made sure his needs were met.

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Carrying him in a sling allowed me to fulfil his need for closeness, while doing things for myself – luxuries like going to the loo, or making a cup of tea! Carrying meant that he thrived while I recovered, and this had such a strong effect on me that I trained to help other parents and carers to safely use slings and carriers. I believe that I deserved a better postnatal experience and that eventually led me to set up Cheshire Parenting Collective – now we work to improve other parents’ experiences and make sure they are supported in their children’s early days, and beyond!

Ellie 1

Ellie Thouret

2018

http://cheshireparentingcic.org.uk/

https://www.facebook.com/TheParentingCollectiveUK/

@CHSParentingCIC

 

Life isn’t always easy is it?

Our thanks to Aimee Mann, special needs parenting mentor and parent representative for SWAN UK, for her contribution to our Special Educational Needs blog series for May.

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Being a parent isn’t always easy either. I have found, over the past seven years, this has been even more apparent as a parent of three small children who include my oldest child, Freddie. Freddie has an extremely rare De Novo Genetic condition called TUBA 1A. We only received this diagnosis after more than four years via a genetic testing study. Up until this point, we had no answers at all.

We found out at my 20 week scan that his brain wasn’t developing as expected and that was the start of an awful lot of heartache and stress. Each week we would go to the hospital for scans and tests. None of them ever gave us any answers. The Doctors could only tell us what it wasn’t and not what it was. Due to the ever increasing list of issues presenting themselves with his irregular brain development, we were advised that we could still go to panel to decide if it was appropriate to terminate the pregnancy, up to 39 weeks.

Freddie was born spontaneously as 35 weeks.

Freddie

There was no real support for us, other than regular trips to the paediatrician. There was no signposting and there were no leaflets, even as a minimum. We were sent home to ‘wait and see’.

After the first six months of Freddie’s life, pretending to ourselves and the outside world that he was going to be fine, we finally had to admit he wasn’t. Freddie was delayed in every area. He was floppy, he hardly moved, he couldn’t sit, he didn’t babble, couldn’t hold his head up well and had terrible reflux to name just a few issues. He has microcephaly and as a result he had an extremely tiny fontanel. We were looking at the possibility of having to have his skull cracked open to allow his brain to grow. We managed to escape this horror by taking him for treatment with an amazing practitioner who works in the osteopathy arena with the Well Being Technique.

Although, I was and still am very lucky to have a loving and supportive family and group of friends, plus I found SWAN UK, the only charitable organisation to support families of children with Undiagnosed Genetic conditions, I have always been very aware this isn’t the case for everyone. I also recognised that even with that kind of support, something was missing. I needed support and coaching in how to manage this situation. This version of life that I wasn’t expecting. Not just the emotional side of grieving the child I thought I would have and the sadness over the challenges that lay ahead but practical support. I needed a way to deal with all of the appointments and meetings. The information I was receiving and the new knowledge I was having to learn and understand, which impacted the decisions we were making on Freddie’s treatment and therapy.

I became so stressed during the first few years of Freddie’s life that I ended up in the Neurologist’s office myself. I was suffering with excruciating head pains that lasted for days at a time. I was convinced I had a brain tumour. The end result was that it was the level of stress I was under that was causing my physical pain. At this point, I knew I needed to make some changes. For me, for Freddie, for our second child and for my marriage.

I have spent a lot of time with supportive friends, received coaching, read lots of books and worked hard little by little to build up my emotional resilience and put into practice some of the techniques I had learnt.

Towards the end of 2016, I launched my blog – Aimee Mann Mentoring, along with a plan for mentoring and supporting other SEND parents just like me. Then in February 2017, with the support of Lynne Barton at Entrust Care Partnership, I launched a set of workshops. I totally believe that anything is possible and that I can achieve whatever is needed for Freddie. I wanted to share the exact techniques that I use successfully, in the hope it would give others strength and progress.

Aimee and Lynn

More than 100 people have attended Aimee Mann Mentoring workshops and this year we are running both the Getting Your Voice Heard – How To Be A Velvet Bulldozer and Building Your Emotional Resilience – The Ebb and Flow of a Special Needs Parent workshops. I also have a secret Facebook group for anyone who has attended one of my workshops. It is a totally safe space to chat, share challenges and successes and receive further mentoring support. Plus, I do a Facebook Live event once a month.

I am so delighted with how my workshops have been received. Feedback is positive and we have had some amazing success stories. One of my attendees, who came to her first workshop in November last year has turned things around so much. She was pretty broken when I met her and cried during the workshop. (We often get through quite a few tissues). She has now, using the strategies I shared, been able to take control of the situation and she has successfully secured the best educational setting for one of her sons, with full support and transport in place. She is on cloud 9. As am I. This is just one example of the power of empowering parents. I love being part of this tribe of empowered SEND parents.

I am running the two workshops, with the support of Lynne Barton at Entrust Care Partnership, throughout this year in Warwickshire. I have plans to widen this geographically in 2019 and I will be adding another one or two workshops to the series, plus some on-line courses.

The next set of workshops will be held in Stratford Upon Avon. Getting Your Voice Heard – How To Be A Velvet Bulldozer will be on June 15th and Building Your Emotional Resilience – The Ebb & Flow of a Special Needs Parent will be on July 5th.

You can read my blogs at www.aimeemannmentoring.com and sign up for my bi-monthly Mentoring newsletter here as well. You can also find me on Facebook at www.facebook.com/aimeemannspecialneedsmentoring

“I attended Aimee’s recent workshop empowering parents in advocating for their special needs child ‘ how to be a velvet bulldozer’. It would be difficult to believe that Aimee didn’t know the audience prior to the meeting as she spoke so well and connected with every parent there. Such good advice and techniques to support as well as compassion and understanding. Thank you Aimee for sharing your journey with us and helping us take the next steps forward.” Julie

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Aimee Mann

2018

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Website: www.aimeemannmentoring.com

Facebook: /aimeemannspecialneedsmentoring

Twitter: @AimeeMannMentor

Email: aimeemannmentoring@gmail.com

Becoming an Autism Parent

Our thanks to mum of four, Hannah Edwards, for telling us her story as part of our focus on Special Education Needs this May.

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My journey with autism started about 2 years ago. Before that, I had heard of autism but presumed it was only very disabled people who had it, people who were wheelchair bound and required round the clock care, people who couldn’t communicate. I was extremely wrong, and very ignorant.

I have four beautiful children, two boys and two girls, aged 11, 9, 5 and 3. I consider myself to be incredibly blessed with my lot. My eldest children all have autism and in the past two years we’ve been on a very difficult journey of diagnosis and understanding.

When I became a mum I did not think I would struggle with being able to look after a child, after all I had had plenty of younger siblings, and nieces too. I could change a nappy and amuse a child, it was easy. However, as my eldest son got older and hit preschool age, and we had trouble with his toileting and meltdowns (I called them paddies back then) I questioned how good a parent I actually was. When my eldest son was age 5, we moved to a new area. He didn’t settle well into the school routine at all. Every morning he would scream and refuse to get ready, it was such a battle. We had to commute twenty minutes each day, which meant that we were always rushing so that we weren’t stuck in the traffic. I left him at a school with seventeen different languages, in a huge reception unit full of children, in a new city, with no one he knew. Every single day he soiled himself and I would be so angry with him for doing it over and over again. I thought he was being lazy and disgusting. At the time I believed his behaviour was bad because he was objecting to the move, but nothing improved. We were able to change schools within six months of being there to one round the corner and he was a different child within a week. The soiling stopped straight away and he enjoyed going to school. We thought our troubles were over.

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Eighteen months on we moved to another new town (my husband is a Methodist minister so we move around every five years or so) and a brand new school. My second son started school here as well, and everyone was much happier. Until a year later, the soiling started again and his behaviour got very extreme over things like having the wrong colour cup. He was eight, and I suddenly realised that his younger siblings didn’t react like that when they got a different cup to what they were expecting. I felt able to ask school if anything was going on because I presumed he must be being bullied or something, but they were really really surprised at his behaviour because he was no trouble in school.

A year previous to that initial conversation with teachers, his previous teacher mentioned his love for routine in class and his obsession with time on a day he had a violin lesson, and she said maybe he has Asperger’s. This wasn’t something I had heard of before and I didn’t really know what she was suggesting. It wasn’t until a year on that we remembered the name Asperger’s, and I began to do my research. The teachers and SENco helped me to gather information and we went to the GP as soon as we could. It felt such a blur. At the doctors, my son sat slouched in his chair and refused to look at her or answer her questions. He had a meltdown when I tried to touch him to get him to sit up and listen. She had seen enough and referred us to a paediatrician. It took six months until we saw a specialist in social communication disorders. He asked me lots of history, and my son sat there drawing a chequerboard pattern even though he was asked to draw his family. I realised that day that he had never once drawn a picture of his family. At the end of the appointment the doctor told me to look up autism and gave me a book list. I was dumbfounded and I cried. I said “so it’s not because I’m a rubbish mum then?” and he absolutely assured me that this was not because of any parenting good or bad and it was not my fault at all. It broke me hearing that my son had this disorder.

To get a diagnosis here in Wiltshire, there is quite a process. Firstly, a GP must refer to a paediatrician with the support of school teachers and SENco. Then a paediatrician carries out an initial consultation and refers to the speech and language team who come into school and observe your child all morning and do a special test with them, which gives them a score. Then without my son present we did a 3Di test which is a special laptop test a speech therapist does (created by Great Ormond street experts) which determines which kind of autism your child has based on how their behaviour presents. Our sons came out as Asperger’s syndrome, a high functioning form of autism.

In the time after the diagnosis, my husband and I felt relief that we weren’t failing at all aspects of parenting, but we also felt grief because our son was disabled now. The word ‘disabled’ is such a massive word to get your head round. Over the past two years he has had extra help in school and the staff know what he needs so he has a very positive school life. My husband and I have been on a course to learn about autism and how to tackle it which has helped us in our marriage and in our parenting as a whole. There are loads of things that we face each day with him that sometimes we fail at, for example, just this morning I asked my daughter to sit in his chair for breakfast because I had ironing on her chair but he completely fell apart at that one change and it took him about an hour to get over it. If I am organised I can pre-empt things like that, and we can avoid them. In our house we have rules for everything, and we have social stories up on the walls, lists and rotas. Our son doesn’t understand his feelings and emotions at any deep level and finds it hard to read body language, so we have been teaching him using various picture cards of faces, and trying to expand his vocabulary around different emotions. He starts secondary school soon, and I think he is ready to go and manage ok there, but I do think we have many challenges up ahead as he makes all the changes he will need to make.

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That diagnosis journey over, about a year ago when my third child was in reception, we noticed that she wasn’t coping at home. We felt as if when we spoke to her she didn’t fully comprehend what was being said. I felt as I had done when my eldest son had started school and I was battling to get him to school. I recognised that feeling of pure frustration because they just have no remorse when they are hurtful. My son once broke something special to me, and he made me so upset yet had no idea what it felt like to be in my shoes. I recognised this same feeling when my daughter did a similar thing and I told school at once. They thought she was getting on just fine in school and she was still so little, but over time things got worse and worse at home because of what was happening in school. I didn’t hesitate, and I took her to the doctors for that initial referral. She had no awareness of why she was there at all and spent her time climbing on the chairs and bed, and licking the walls. The doctor didn’t need telling twice, and she was soon seen by a paediatrician. He noticed straight away that she had autism too, but to be sure she had to have the speech and language therapist session in school too. She confirmed it as well and so next week we go back to the paediatrician to see if she needs any further tests before officially diagnosing it. She is far louder than my son in public. She isn’t anywhere near as understanding of her feelings as her big brother, so every emotion is highly charged. If she is worried, her feelings are off the scale and we have to try and calm her down from anxiety attacks. If she gets cross about something seeminly small, her anger is so extreme that she has to be held and told what has just happened to her and what she is feeling. She needs lots of things explaining to her still. Their autism is very similar, so I already have some tricks up my sleeves, which helps massively.

Meanwhile, my second son T had been having some trouble sleeping, and one night, age 8, he told us that he hated school so much that he would rather die. We felt that this was very extreme. He always struggled returning to school after holidays, but didn’t we all?! I spoke to the SENco about it because it did feel like his mental health was being affected by school and neither his teacher nor us could work out what was going on. The SENco took me aside and said that she thought that he too had autism. I went away from that meeting feeling like the world had gone mad! She was saying that my son T – who has never ever been any trouble, who had never screamed because of the colour of a cup, who had never laid of the floor sobbing because I announce that we are going out to the fun splash pool instead of going to the supermarket – had autism too. He has always been shy, but well behaved and thoughtful of other people’s feelings. She mentioned atypical autism, which I had never heard of. We sat down and made a list of the things he has always struggled with and found that there were quite a few autistic traits there, and he certainly wasn’t managing in school even though, again, the teachers didn’t see anything like that as yet again he’s the model student. Our weekends were becoming hellish because of his anxiety about returning to school on Monday. So somehow I found myself sat in the same doctors surgery whilst he referred my second child to the specialists. Last week he saw the speech and language therapist who found that he probably did have autism because he was so literal with her, he enjoys adult company and has massive anxieties. She had a whole list of observations that we haven’t seen at home, but she knows what to look for. Next week he sees the paediatrician who if he agrees with the speech therapist, he will be diagnosed as well. We are due to move areas again this summer, and so the health professionals together with the teachers, have fast tracked our appointments so that when we move, the new schools will be able to work with a diagnosis.

Hannah

The biggest thing about becoming an autism parent has been how varied the challenges are with each child. At school the children are model students, they are way above average for reading and maths, and yet struggle so much socially. Each of them brings us such joy through their wonderful sense of humour and brilliant creativity. They have special interests, which over the years has meant that we have all become experts in Bob the Builder, Noddy, coaches, Minecraft, Lego and microphones! It has been quite difficult at times to find support though, once diagnosed you have to do your own homework and although the council offers a course to go on, their waiting list was so long we had a years wait. Other support comes from mums at school who are going through the same stuff as us. Being an autism family is our normal. We don’t know any different. We have been kinder to ourselves, we have given up trying to make our children join in things they don’t want to join in, and we have committed ourselves to teaching them to be wonderful grown-ups. We have no doubt that their special skills and great intelligence and academia will help them go really far in life. Autism won’t set them back, and as parents, we will help them to live happy and fulfilling lives. The diagnosis is not the be all and end all; it is just the beginning of being something really amazing.

 

Hannah Edwards

2018