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!

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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.

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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