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

A different parenting journey

Lynne Barton of Entrust Care Partnership is one of three speakers who will be leading our session on Parenting Under Pressure.  The session is part of our event this October for families and the professionals who support them.  “Growing Families: Facts, Fiction and Other Stuff” is a not-for-profit event, and you can read more about the aims and organisers here.  The conference is taking place in Manchester on Thursday 6th October – please click here to book your place.

This is the second post that Lynne has written for our blog series, and here she explores how disability takes you on a different parenting journey.

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Entrust Care Partnership offers short breaks, respite, holidays, advice and support to children with additional needs and their families.

We listen and respond to parental and children’s aspirations organising our activities to fulfil expressed needs. Families are at the heart of our organisation and we pride ourselves on offering good value for money, maintaining our integrity and delivering on our promises.

 

Parenting under Pressure

 A different parenting journey

Every situation is unique, each family is different and one size is unlikely to fit all.

A baby’s additional need can be apparent from birth but for children it can be a more gradual realisation for parents that their son or daughter is not developing as anticipated.

I can only offer our experience, derived over many years, from listening to parents we support, which may resonate.

Some parents tell us they feel very alone, others feel they need to grieve, feelings of guilt associated with being at fault in some way seems common, as does a reported ‘loss of self’ with the child’s disability or additional need becoming ‘centre stage’.

A medicalisation of the child’s condition can often be a consequence with new language and all manner of medical and para medical engagements, this in turn can create many extra pressures. The usual pathway of new baby, many congratulations and a circle of grandparents and close friends escalates rapidly to include, paediatricians, speech, physio and occupational therapists to name but a small few!

So here you are on an unexpected path caring for and raising a baby with additional needs what happens now?

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Support and new friendships

Most importantly celebrate your child, look forward to the joys he or she will bring to your family, act intuitively you will know best and don’t be defined by disability. Communication with your partner and family is vital as the situation can put strain on everyone, siblings will be a source of help but can also have their own needs overlooked. The siblings we meet in the course of our work are loyal, caring and understanding with a maturity beyond their years

There is support available both from voluntary organisations and the public sector, find out all the information you can taking time to find the service which suits you and your family circumstances best. The Health Visitor should be a useful starting point for signposting and general advice.

Contact a Family http://www.cafamily.org.uk is a wonderful national charity providing access to all manner of information on siblings, fathers, entitlements, organisations that can help you fathom the maze of systems which can steer anyone ‘off course’.

You may have an entitlement to a government benefit known as Disability Living Allowance, the form itself is a challenge but one thing you will develop is resilience. It is an inescapable fact that if you have a child with a disability or additional need more practical resources are needed.  At the click of a button www.skybadger.org.uk  can assist on many useful aspects at all times of the parental journey and have a true empathy and understanding borne out of their own experience.

Connecting with other families is a source of fantastic knowledge, fun, enjoyment, useful tips, advice, comfort and real support.  Lifelong friends are made along this journey which can be an unexpected blessing and joy.

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Empowerment

Sometimes we all could do with a little help in putting our point across in an assertive but non-confrontational way.  If I had a £1 for each time a parent or carer has exclaimed that they ‘have to fight’ for services for their child I could have retired by now!  If we accept this basic premise then as parents what is it that you might need to do differently to protect your own health and wellbeing?

Meetings are an inevitable part of this journey and powerful emotions, although natural, can sometimes interfere with the process of successfully getting what you want.

At Entrust we recently engaged a coaching specialist to work with families and at a workshop he gave us a few tips:

  • Always be well prepared before the event
  • Decide what outcome you want to achieve
  • Have three key points you need to get across, write them down if you need to
  • Put yourself in the professional’s shoes and reflect on their likely responses, practice your answers
  • Lead the Agenda – “I understand that your time is limited these are the issues I need to discuss”
  • Stay calm and focussed
  • Engage in active listening

 

I hope you can find your voice and feel empowered even when parenting under pressure you won’t be alone.

 

Lynne Barton
Director
Entrust Care Partnership
September 2016

 

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Partnership: patients, parents and professionals working together

This October’s Growing Families event in Manchester will be exploring evidence and expectations around the early days with baby.  One of our breakout sessions is entitled “Parenting Under Pressure”, and will be led by Helen Calvert of hospital breastfeeding, by Catriona Ogilvy of The Smallest Things and by Lynne Barton of Entrust Care Partnership. They will be exploring what happens when the parenting journey has additional challenges added to it, such as premature birth, illness or disability.

We are delighted today to have paediatrician Victoria Thomas write for us about partnership working when your child is unwell – a key element of parenting under pressure.

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Shared decision making is a popular and well-established concept in medicine, summarised well as ‘the clinician explaining the medical evidence for different options and family members discussing these options in the context of their personal values. With both the medical evidence and personal values delineated, the clinician and family jointly determine the treatment plan’ (Fiks and Jimenez, Acta Paediatr, 2010 October; 99 (10): 1464-1466)

This sounds ideal. Surely as parents and professionals shared decision making should be reasonably straightforward – after all, don’t we all just want what is best for the child or young person? Yet sometimes there seem to be clashes between families and professionals. In this blogpost I’m going to look at some of the reasons why these occur, and what both groups can do to work through or avoid them in the first place.

Time –  or the lack of

A ‘business’ ward round or busy clinic where there are dozens of patients to be seen and the team feel under pressure is not the ideal time for complex discussions. There is often no privacy, clinicians are being interrupted by bleeps and queries, and carers have other commitments – the school run for other children, getting to work. Any topic which needs long discussion doesn’t lend itself to this environment. It works much better to come to the conversation with the time it warrants, and it is perfectly acceptable for either party to say words to the effect of, ‘this isn’t the right time for this conversation, can we set aside the time it needs for later/tomorrow/next week?’. By the same token, parents and clinicians are both vulnerable to exhaustion, stress, hunger. No helpful exchange of views was ever had when one or both participants was ‘hangry’! Clinicians and carers both benefit from a chance to rest or refuel before getting into complex discussion wherever possible.

Mismatched agendas and making maps together

It is hard to work together when our thoughts are going in different directions. Setting an agenda jointly helps everyone. Some parents understandably find this challenging, as they feel uncomfortable directing professionals, but it can be much easier once there is clarity around the concerns of both sides. An example of this that sticks in my mind is a respected and brilliant colleague who spent an entire clinic appointment with a teenage girl feeling like he was getting nowhere trying to engage her in the management of her chronic health condition. It was only after the consultation that she emailed him to say she had been trying to tell him that she was pregnant and wanted advice on that topic.

Sometimes communication is like the punchline to that old joke about asking for directions: ‘well, I wouldn’t start from here!’ Sitting down to look at the map together first can help hugely. Some of my work involves optimising nutrition for children with complex medical needs. Talking with families about their background feelings about food and previous experiences is invaluable. It can be all too easy for me to be working off a script about food as medicine, when parents are thinking about the importance of shared eating experiences or the practicalities of managing complex regimens. Opening the dialogue on both sides opens our minds.

Similarly, I have learned of the understandable fear carers experience when meeting a new clinician; the stress of having to tell a story from scratch or the dread that the new professional will try to revisit treatments that have proved to be dead ends in the past. Pithy summaries and focusing in on two or three key areas of concern can help with this. Teams often try to maintain continuity for this reason, but shift systems, clinical commitments, the rotation of clinicians in training and other demands on time can make this more challenging – I am feeling very conscious of this as I am writing this article while on maternity leave! Bringing a previous clinic letter to appointments that summarises key events and issues to the satisfaction of the family can be really helpful as sometimes NHS files go missing.

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Well-meaning paternalism (and its consequences)

The road to paternalism is paved with good intentions. So much of the time clinicians intend to make life easier for parents who are going through the most challenging time of their lives – caring for a seriously ill child – but get it wrong. Breastfeeding is a key example of this. Often healthcare professionals well-meaningly meddle with breastfeeding, thinking that it puts additional pressure on a mother already dealing with huge stress. When we do this, we ignore the benefits for both mother and child of breastfeeding, and we override the mother’s right to make her own decisions. When families are given the complete information they need, and the time to absorb it, then they are empowered to make decisions for themselves. Just because we are paediatricians, we must remember not to treat everyone we encounter like children. We do not get the right to decide what is too hard for parents to do.

Where is the patient in this?

One of the joys of paediatrics is learning the art of the triadic consultation: how to work with parents and children and young people at the same time. As children get older, the dynamic of the relationship is constantly shifting. It can be hard for both parents and professionals to recognise this development. I was asked to ‘do the sex education chat’ with several teenagers when I was new to a service, as the professionals who had been caring for the children from babyhood struggled to see them as young adults. We need always to be looking to the young person to tell us what their concerns and dreams are, and accepting that those are what must set the agenda.

Sometimes we all need to take a step back and look at what the child needs; as parents and professionals we each have pieces of the puzzle and we need to put those pieces together to get the whole picture.

Nobody is perfect – neither professionals or parents

Writing this post has made me cringe a little inside, remembering all the times I’ve misread cues or mismanaged conversations with young people and their families. It feels a little like I am claiming I know what I’m doing. In fact, I’ve learned the most from the situations where I got it wrong and the families I work with were forgiving enough to move on from my clumsiness. In the same way, I always remember that families are under constant, immense pressure, and a truly therapeutic relationship incorporates a little grace at those worst times. Anger, tears and questions are all part of the deal.

The most positive partnerships are not those where no one ever makes a misstep, they are the ones where both sides are able to accept and move on from the difficult moments.

Setting out on a journey together

I think the parent-professional relationship works best when we see ourselves as fellow travellers puzzling out a route together rather than the clinician taking on the role of the satnav directing the course. After all, a satnav is all too easily ignored! A satnav cannot understand that I need to pull off the route it wants so I can feed my baby, or because I’ve suddenly remembered I need to stop at the supermarket, but a co-pilot can understand these issues and help me navigate them. Travelling the path together helps us negotiate the obstacles together. And in the end, it is surely in the best interests of the children in our care.

 

Dr Victoria Thomas
August 2016

To book your place on “Growing Families: Facts, Fiction and Other Stuff” please click here.

Growing and Grooving

I have been enjoying Liz Osler’s Little Groovers classes with my youngest son since he was a baby, and I was so pleased when Liz said that she would like to be one of the sponsors for this October’s Growing Families event in Manchester.  The not-for-profit event is for new and expectant families and the professionals who support them, and is taking place on Thursday 6th October in Manchester city centre.  You can find out more information here: https://growingfamilies.co.uk/

Liz wanted to take one of our “Seedling” sponsorship packages, which meant that she wanted to sponsor one of our six breakout sessions.  I thought she might take the one on Doula Care, or perhaps Babywearing, but she surprised me by saying that she would like to sponsor our session on Parenting Under Pressure, which is all about what happens when added stressors are put upon the parenting journey, such as premature birth or disability.

Her choice reminded me that we don’t all come in neat little boxes.  Just because she runs a jolly music class for babies and tots doesn’t mean that Liz has not experienced parenting under pressure.  I had the privilege of interviewing Liz this week and she explains here why she chose the session that she did, and how she has been affected by her own growing family.

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Liz lives in Sale, Cheshire, with her partner and three children – eight year old daughter Myla, five year old son Tom and 15 month old little girl Stella. Her mum was a music teacher and she studied piano and oboe from the age of six, and did an Arts based degree in Fashion and Textile Design.  This is where she met her partner, Pete, and they then moved to London.  Veering away from art and music, Liz went into publishing and Pete a career working for a stock exchange.

Then about 6 years ago they decided there was “more to life than staring at a screen” and they took the decision to both quit their steady jobs, sell their house and move their family to Manchester.  Pete had qualified as a clinical hypnotherapist whilst living in London, and once in Manchester began practising both privately and within the NHS, and Liz started Little Groovers.  They are now both doing what they really want to do, although the two of them being self-employed means a lot of “tag team parenting”!

Liz says that “Little Groovers is all me; I’ve arranged and recorded the music, invested in stacks of percussion instruments, made the website… everything!”  She now has Nicola on board as a second session leader, and between them they do classes every weekday in the south Manchester area, as well as private parties.

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Since having her youngest daughter 15 months ago Liz is taking a break from doing additional work in the evenings, but for some time she worked for two funded organisations that provide social opportunities for children with special needs. She facilitated music sessions for autistic children, and another social group for children with cerebral palsy and other complex needs. She describes “magic moments” such as watching a non-verbal young man demonstrate a sense of rhythm with the ‘boom whacker’ instruments, and children telling her that they “love making music”.

But it was the birth of her son 5 years ago that gave Liz a real insight into the additional pressures that some parents are under.  Tom was born 5 weeks premature – he was born very quickly, was diagnosed with jaundice and had to stay in hospital for a week.  He was then readmitted to paediatrics for another week – his jaundice was worsening and he was not putting on any weight – Liz describes him as being “so tiny”.  She knew that something was wrong but found some healthcare professionals hard to convince.  It was only after she stopped breastfeeding Tom at six months old, and he had worsening stomach problems, that he was finally diagnosed with a cow’s milk protein allergy (after Liz did her own initial research).  Liz says it was “ages before he stopped looking like a little old man” and started to put on the weight.

When Tom was only 4 months old Liz had to go back to work, which she describes as being “very hard”, particularly because in her words he was a “rubbish sleeper”, not reliably sleeping through the night until he was 18 months old.  Liz describes how she felt guilty about her daughter Myla, Tom’s older sister, because “I tried my best to be a ‘good mum’ by attempting baking sessions, crafts, trips out with Myla and her constantly crying baby brother but I was always so tired and grumpy and frustrated by the situation”.  We agreed that this is a common feeling amongst mothers when they have a second child.

So I asked Liz what she feels new families need, from the perspective of someone who has been parenting now for over eight years?

“Someone to say it’s going to be alright, it’s just a phase.  This too shall pass.  Just after I had Stella my Mum became very ill and had to go into hospital for 3 months, and you just sort of have to crack on, and you just realise that the poor baby isn’t getting the time and attention that her siblings had but it isn’t doing her any harm.  In fact she seems to be the most confident of the three!  With your first you worry so much that you’re not doing it right.  It’s easy to say when you look back, but it’s all just a phase!  Sleepless nights, teething, ‘velcro’ babies….And we’ve got plenty of phases to come haven’t we really – including the teenage phase!”

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Liz is also on the committee for Delamere Toy Library which is an independent charity working in partnership with Trafford Borough Council. It offers an inclusive play environment where parents or carers can relax while the children play with a wide selection of toys. Many of the toys are purchased specifically to meet the needs of disabled visitors.  Amongst the groups that the library runs there is one for children with special educational needs, and one that is run by grandparents for grandparents.  The organisation’s website states “At the Toy Library we provide toys plus a supportive listening ear to all families, carers and professionals in the area. We work closely with parents and carers of disabled children and professionals.”

Sounds like a much needed resource for parents who are facing some pressure.

 

Helen Calvert
July 2016

 

 

Parenting Under Pressure: Supporting Families & Supporting Their Journey

Lynne Barton of Entrust Care Partnership is one of three speakers who will be leading our session on Parenting Under Pressure.  The session is part of our conference in October which aims to explore expectations and evidence around the early days with baby.  “Growing Families: Facts, Fiction and Other Stuff” is a not-for-profit event, and you can read more about the aims and organisers here.  The conference is taking place in Manchester on Thursday 6th October – please click here to book your place or join our Facebook event to register your interest.

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I am Lynne Barton and I am the founding Director of Entrust Care Partnership.

Our not for profit organisation was set up a couple of years ago in response to parental needs and aspirations, we now provide a range of services for disabled children, young people, adults and their families.

  • We empower disabled children to have ordinary lives
  • We empower parents to have their voices heard
  • We empower professionals to have a ‘can do’ attitude to disability

There is a very well-known poem written by a parent Emily Perl Kingsley called Welcome to Holland in essence it describes the experience of raising a child with a disability as finding yourself on a plane to Holland, when you had signed up for Italy. Nothing is as expected, the language, the food, the landscape, the people, but there is nothing you can do to change the situation. Your family journey is a different one from the one you had anticipated and we are all shaped by life’s journey.

I am pleased to recognise note a positive change in practice and attitude towards the challenges faced by those with a disability however we are constantly told by families about a fight for services and how much more needs to be done.

In the 1950’s my mother gave birth to a little girl, Elaine, she had hydrocephalus, nothing could be done she stayed at the hospital until the inevitable happened, mom came home, there was no follow up and it was rarely mentioned again.

In the early 1990’s I managed the Child Development Centre in a busy acute hospital working with health professionals to assess children under five who were not developing as expected.

There I met Mathew, he was less than a year old but it was clear that he would need lifelong support to develop – he has significant learning disabilities and Autism, speech & language therapy, additional teaching & special school followed. He is now 23, he likes music, enjoys meeting friends and makes a drinkable cup of coffee.

In 2015 Florence was identified as having cerebral palsy at less than two years of age, physio therapy, splints and specialist equipment quickly followed, emotional support has been harder to find.

Matthews’s mother is Barbara, she has become my long standing friend and a supporter of Entrust Care Partnership.

Florence is my granddaughter, her mother Emma, my own daughter recently just completed a sponsored run for us and helps us raise income through her donation of toys, which we sell on at table tops sales.

Having a child with a disability often means a lifetime of care – still a fight for services.

We can all make a difference, you as an individual, parent or professional through a listening ear, a supportive word, an empathetic response and a sharing of your knowledge and skills in a non-judgemental way.  Entrust Care Partnership aspires to support families and support their journey.

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Lynne Barton
Founding Director, Entrust Care Partnership, July 2016

Parenting Under Pressure – Learning to be Mum in Neonatal Intensive Care

Catriona Ogilvy of The Smallest Things is one of three speakers who will be leading our session on Parenting Under Pressure.  The session is part of our conference in October which aims to explore expectations and evidence around the early days with baby.  “Growing Families: Facts, Fiction and Other Stuff” is a not-for-profit event, and you can read more about the aims and organisers here.  The conference is taking place in Manchester on Thursday 6th October – please click here to book your place or join our Facebook event to register your interest.

In this post, Catriona explores what it is like learning to be a mother on NICU.

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When you are expecting your first baby you begin to imagine how your life might be; you think about holding your baby for the first time, dressing them in their babygrow, caring for them and nurturing them. You think about introducing them to the wider family, of the celebrations you will have and of the new ‘mummy’ friends you will make.

Sometimes though, things don’t always go to plan.

When a baby is born with complications, or like my first son, born prematurely, everything you had imagined and dreamed of is shattered in a matter of moments. The moment I gave birth to my tiny son he was whisked away. He was resuscitated on a table beside me for over six minutes as my husband was torn between caring for me and helplessly looking over at the medical team desperately trying to ventilate and stabilise our baby.

I had become a mother for the first time, yet I did not have a baby in my arms. Arriving 10 weeks early with little warning I was in shock.

We had landed in the world of neonatal intensive care; a world of medical devises and babies housed in perspex boxes. This would be parenting under pressure!

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I remember leaving my baby for the first time. He was only a few hours old. I held his tiny fingers through the incubator portholes and whispered ‘see you soon’. That night I climbed into bed at home and an overwhelming sense of emptiness consumed me. I was numb and grieving for the baby who I had left behind.

He was in the care of an exceptional medical team and wonderful nurses cared for him 24 hours a day as if he were their own. Their kindness made leaving him a little more bearable each day, but behind the safety and warmth of his incubator I was a mother, but he was not really mine.

For weeks I would ask permission to hold him; on occasions I would be told I was holding him too much. Nappy changes were done on a strict timetable and feeding was scheduled around charts and numbers. The unit where he slept was behind security doors and rigorous hand washing became the norm. Hours were spent beside his incubator, yet I was not able to do those seemingly basic mummy tasks of cuddling, consoling, feeding, bathing and dressing him. I cared for him as best I knew, but he did not feel like mine and I did not feel like a mother.

I still remember the nurse who helped me to be a mum in NICU. She not only showed me how to change a tiny nappy, she understood how nervous I was. She got how scary it was to move your babies stick thin limbs, and how the sound of alarms and buzzers terrified me as I contend with tangle of wires and tubes.

I remember the nurse who asked if I’d like to dress my baby for the first time; how she helped me to manoeuvre him limbs and lines into tiny sleeves. He started to look like my baby, dressed in an outfit I had chosen.

Parenting under pressure? NICU takes parenting to the very edge of extreme!

But, it is a NICU nurse who can give you hope. A NICU nurse who can provide reassurance. And a NICU nurse who can meaning in a world that at times can seem so empty.

Finally, when parenting under pressure it is a NICU nurse who can help you to be the most important person to your baby – mum.

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Catriona Ogilvy
June 2016

Parenting Under Pressure – When Family & Friends Really Count

When I started to plan the Growing Families conference I knew that I wanted to make it inclusive for those families who are facing additional stressors on their parenting journey. Having a premature baby, having a baby with a serious illness or a disability – these things add many challenges to the already life changing experience of having a child. Parents in this situation often report feeling as though they couldn’t take part in “normal” antenatal classes as their experience was likely to be so different from the other families present. And whilst there is a lot of focus on the medical issues faced by these children and their parents it can be forgotten that those parents will still be, first and foremost, mums and/or dads. And what about the grandparents? The aunts and uncles and friends? How do they get involved and fulfil their role in this growing family, when they may not fully understand the medical situation or the journey that their loved ones are on?

This is why one of the breakout sessions at our event in October is entitled Parenting Under Pressure. The session will be led by me, by Catriona Ogilvy of The Smallest Things and by Lynne Barton of Entrust Care Partnership. We will be exploring what happens when the parenting journey has these additional twists and turns, and anyone with an interest in, or with experience of, this is very welcome to join us.

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What is my personal interest in this subject? Well my youngest son David has a congenital heart defect, Hypoplastic Left Heart Syndrome. Essentially the left side of his heart doesn’t work, it’s a waste of space. His condition is one of the conditions that you will see referred to in the media as the child having “half a heart”. What did this mean for our parenting journey? Well suffice to say he wasn’t born at home like his older brother was! No, David was born by caesarean section at St Mary’s Hospital in Manchester, spent a night in NICU and was then whisked off to Alder Hey Children’s Hospital at one day old. When he was just five days old he had open heart surgery, and he had another operation at five months. David is now two and a half, and he has one more surgery to go, probably when he is around three or four years old.

We have been incredibly fortunate. David is so healthy and strong, and has so far given us very little to worry about, as far as having a child with HLHS goes! But as you may be able to imagine, that is a very different scale from the scale of worry most parents face. For a start we have had to sit for six or seven hours waiting to see if our child has survived surgery. And we have had to do that twice. We have had to wait and see if he is able to feed orally or whether he would need to be fed through a tube in his stomach. We have seen him desaturate rapidly on ICU so that at one point he stopped breathing. We have seen him hooked up to monitors and with big tubes stitched into his chest to drain the fluid. And we have spent a fair few hours on our local children’s ward getting him checked every time he had the slightest snuffle. Which as you know happens regularly with even the healthiest newborn!

As I say, in the scheme of HLHS children, we have had it easy. But in the scheme of parenting as a whole we have definitely faced additional pressures. I have written so much about my experiences of breastfeeding David and the campaign that grew out of that. I have written about those early days and the shock and the stress. I have written about how milestones become all the sweeter when your starting point was not knowing if your baby would come home at all. But today I would like to share with you my experience of how friends and family can really make a difference when the pressure is on, and how grandparents, relatives and friends most definitely have a role to play to support families in situations like ours.

As I am sure you can imagine, there are some “don’ts” in these situations, things that parents would probably rather you didn’t do if they are facing stressful times. I think that this article on the “Silk Ring Theory” sums up so well the importance of giving support, but reaching out elsewhere if you need support yourself. Parents in these situations can barely support each other, and they are using every ounce of their strength to keep strong together and to support their children. If you need support, and as grandparents or close friends then it’s likely you will, please reach out elsewhere and don’t ask the parents to hold you up at this time.

But what about the “dos”? Well I can only speak from my own experience but these are some of the fantastic things that friends and family did for us, that made such a massive difference when David was in hospital:

  • Do practical tasks: so many people asked me what they could do to help, and in reality what they could do was pick up those things on the “to do” list that needed to be done but which I just couldn’t manage. My eldest son needed a backpack for Playgroup – one of my friends sorted that. There were a couple of things we needed to have with us in the hospital – another friend sorted those. There were tiny tasks that on an ordinary day would have been no problem at all, but when your child is in hospital you do not have the headspace to even work out how to do them let alone get them completed. Our friends took those on with efficiency and made life so much easier.
  • Cook! But please be organised about this if you can. One evening a friend of mine brought round a home cooked meal, and as she was there a relative also brought round some food and we mentioned that we still had something in the fridge from the day before. My friend quickly realised that we were going to be inundated with food and would no doubt end up throwing some away and then not having enough in the freezer. So she organised a dinner rota with our friends in the area. I cannot stress enough how amazing this was. Every single day delicious home cooked food was delivered to our house, and this carried on until a week after David came home from hospital. It only stopped when we said that we were okay to take on the cooking again. Not only did this mean that our eldest son was fed healthy food at a time when otherwise he would most likely have lived on toast, but it also meant that we were eating healthily. This kept us going, it stopped us from getting run down, it kept up my supply of breastmilk…. It was just the most wonderful thing.
  • Accept the tone that the parents want to set. We are not doom and gloom kind of people. We are not melodramatic people. For us it was important to keep a positive outlook, take the good things as a win, to keep laughing and to face events with a sense of perspective. So we needed those around us to do the same. Anyone approaching us with drama and excessive emotion was not helpful, and we were fortunate that everyone did their very best to match our tone. For others the exact opposite could be true. If you need people to take on board the enormity of what you are going through, to understand the emotion and the heartache, then the last thing you want is someone bouncing in full of how you should “look on the bright side”. So please try to see what tone the parents are trying to set and understand that that is their way of approaching events.
  • Accept what the parents can give you. When a child is in hospital there are so many people who are interested in how things are going, and for us we needed those people, we needed them to know what was happening and we needed them on our team. But there was no way that we could phone them all individually, update them all on a daily basis with personalised messages and long drawn out conversations. The only way we could keep people in the loop so that they knew what we were going through was to send out mass text messages and updates on social media. Even close family members often had to update each other via chain phone calls rather than each receiving an update from us. And we were so fortunate that everyone understood this and was just happy to hear from us as and when we could communicate. It doesn’t matter how close you are to a family, when they are under pressure please don’t assume that you have a right to personalised updates and messages. It just might not be possible.

I would like to say an enormous thank you, once again, to all of the people in our lives who helped us in those early days, and who are helping and supporting us still. The things you did enabled us to focus on being mummy and daddy, to focus on loving and nurturing our two boys whilst the medical team did their stuff. We may have been under pressure but you helped us to still be parents.

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My beautiful boys in 2016

Helen Calvert
June 2016

“Growing Families: Facts, Fiction and Other Stuff” is taking place in Manchester on Thursday 6th October 2016.  For ticket price information and to book your place please click here.