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.

Little Groovers boy

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!”

Little Groovers girl

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

 

 

Is THIS normal? The first week with a breastfeeding newborn

Emma Pickett IBCLC is leading our breakout session on Breastfeeding at “Growing Families: Facts, Fiction and Other Stuff” this October.  It is a one-day event for all expectant and new families – mum, dad, grandma, grandad, aunts, uncles, supporters – and the professionals who work with them. This is a not-for-profit event, created by four mothers, two of whom are also healthcare professionals. Our mission is to tackle the postnatal information that desperately needs covering for new families. To explore expectations and evidence around the early days with baby. To keep ticket prices low, with no expectation of making a profit, in order to open up the event to as many people as we can. To ensure that support for the event comes from ethical organisations and those who share our interest in evidence based information and family well-being. To give new families the confidence to face the challenges ahead.

Please click here to book your place: https://growingfamilies.co.uk/prices-booking/

Here Emma tells us about what is actually “normal” when breastfeeding a newborn baby.

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I’ve been taking calls from new parents on the National Breastfeeding Helpline since it opened in 2008. Calls often begin with a mum in tears and she’s sounding desperate. Breastfeeding really matters to her and she wants it to work. She’s overwhelmed and confused. The first voice we hear might sometimes be the partner’s and a mum is too upset to even come to the phone.

Hundreds of these calls end with a contented calm voice saying, “Thank you. It’s such a relief to know that’s normal. I feel so much better now”. As it happened, breastfeeding was actually going OK but it was her understanding of everything else that was confused. What she interpreted as a breastfeeding ‘problem’ was actually a new baby’s normal and natural response to their new environment. She just didn’t know how babies were ‘supposed to behave’.

If I had a magic wand, I would download into all parents the knowledge of what is normal in a newborn. Think The Matrix film – but instead of the ability to pilot helicopters or practise high level martial arts, you’d know about cluster feeding and a newborn’s desire for closeness, nappies and normal fussiness.

The National Breastfeeding Helpline would be quieter overnight but we’d all feel a lot more relaxed and able to enjoy these teeny new people in our lives.

But actually… you’ve already had that download. You just may not have realised it. It’s deep in there after millions of years of evolution, facilitated by hormones and natural instincts. It may not mean you know the exact details of the colour of baby poo on day 3 or how to correct a baby’s latch without help but there’s so much you do know. You probably didn’t grow up surrounded by breastfeeding (as Elena Abell’s recent blog highlighted) and for some aspects of breastfeeding you will need support and information, but there’s a ton you do know about your baby: things that just feel right and things that don’t.

And your baby had the download too. Sometimes it gets fuzzied with a birth that didn’t go to plan but their instincts are in there too.

Two things that are normal:

  1. Babies want to be close to you.

Imagine a news story about a baby gorilla just born in London zoo:

“ZSL London are delighted to announce the birth of new baby Fumbi. Mother and baby are in good health” but days later it’s reported that staff are concerned. Fumbi’s mother (despite being surrounded by other older female gorillas and having observed newborn care) keeps trying to put Fumbi down. She places her in the hay and walks off repeatedly and appears to be trying to avoid holding her for long periods. Fumbi is agitated. Her heart rate and respiratory rate shows signs of distress. She’s losing heat (because teeny newborn gorillas have a large surface area and need to be held to regulate their temperature). Fumbi isn’t feeding as often a newborn usually does because of the periods of separation. The mother appears to be missing out on some of the oxytocin induced bonding that helps the formation of their early relationship. Fumbi is at risk.

Oh dear. Something seems to have happened to Fumbi’s mother. We’d be worried.

However this is exactly what is happening in human homes across the UK today (though not in many other countries and cultures). We are primates just as gorillas are. We’re not designed to dump our babies and go off hunting and foraging for nuts. We can see that by looking at the constituents of our breastmilk. Other mammals have much higher fat milk so babies can be left while mum fishes or grabs a rabbit for lunch. Our babies are born immature because of our pelvis shape from being upright and our large brains and they are designed to have milk regularly for a relatively long time. We are supposed to hold our babies. Some people call us ‘carry mammals’.

But instead we got the message somewhere that babies can be ‘spoilt’. We are supposed to encourage them to be independent and sleep apart from us. We’re meant to be able to put them down. If we can’t put them down, if they want to sleep touching us, if we hold them when they sleep – we’ve apparently failed some test. Though it’s not quite clear who the examiner is.

There are popular books that even use terms like ‘accidental parenting’ just to load on the value judgments. Parenting experts such as Truby King in the 1910s told parents to avoid cuddling and unnecessary attention and the spectrum of ‘advice’ has been flip-flopping backwards and forwards ever since. Today one book will tell you to wear your baby in a sling as much as possible and another will tell you to arrange a baby’s sleep by the clock and leave a baby only a few weeks old to cry if necessary.

What does your baby want?

They don’t want to be put down and eaten by a sabre toothed tiger (less of a problem these days). They don’t want to waste energy keeping warm and crying when they don’t need to. They want to keep those calories to lay down fat and develop their brain. They want to use your breathing rate to regulate their own respiratory rate. They want you to notice when they start to show early feeding cues. They want your familiar smell and taste. You are home to them.

“My baby won’t go down in its Moses basket”. Yes, it’s frustrating when you thought that was what they were ‘supposed to do’. But would it feel easier if you knew that wasn’t likely to be their first choice and there are good biological and evolutionary reasons for that?

“But I’m not going to get any sleep”.

From the Infant Sleep Information Source [1]:

“70-80% of breastfed babies sleep with their mother or parents some of the time in the early months, and many studies have found that mothers and babies who bed-share breastfeed for much longer than those who sleep apart.”

Research shows that these mums breastfeeding through the night (and mostly bed sharing) will ALSO be getting better quality sleep and be more rested than other parents [2] Good sleep is possible if we stop battling nature.

The book “Sweet Sleep: night time and naptime strategies for the breastfeeding family” is a great place to start. It talks to you about creating a safe space where everyone gets a better night’s sleep.

A lot of your baby’s urges are eminently sensible. If they don’t want to sleep in a separate pile of hay, trust them. They are here today because those urges have kept them safe over the generations.

Don’t expect to be up and making a moussaka on day 5. The feeling that you ‘shouldn’t’ be holding your baby is exacerbated when we live in a society which tries not to let new parenthood change our lives. Our bodies aren’t supposed to change. Our commitment to work isn’t supposed to change. Our ability to engage with political life and housework and social media isn’t supposed to change. Actually, throughout much of human history, mum isn’t going to do much of anything for a good 40 days. Someone else is making the moussaka, just as you would have once made the moussaka for them. We are supposed to be doing nothing else other than eating the food made by others (really doesn’t have to be moussaka), sleeping and being with our new baby.

  1. They come to the breast for lots of different reasons and they usually have a good reason for doing so.

Just as parents feel they’ve failed if their baby doesn’t sleep in the separate pile of hay (aka fancy Moses basket that cost £75 and granny knitted a blanket for), they feel a failure if baby is at the breast ‘too much’. I have written elsewhere on the dangerous obsession of the infant feeding interval [4]. It’s dangerous for both babies and mothers. But we need to remember breastfeeding isn’t just about feeding and it never has been.

A phrase most breastfeeding supporters would like to evaporate from the planet is, ‘he is using me like a dummy’. No, dummies were invented partly because we forgot what breastfeeding was about. There’s not enough evidence to say for certain how dummies impact on breastfeeding [5] but those of us who work with breastfeeding families can see how the sucking action and latching can sometimes shift when babies use dummies a lot and there can be issues when mums feed less and milk supply doesn’t get the messages it needs.

Babies have jobs to do. They are helping you to form new breast tissue in the first few weeks. They are elevating your prolactin levels (the hormone that governs milk supply). They are stimulating oxytocin hormone (which is the hormone key in relationship-building and creating a sense of calm and well-being). They are increasing milk volume and altering fat content. They are reducing cortisol stress levels. They are facilitating digestion and the passing of stools. They are hydrating, regulating their temperature, feeling emotional secure, growing brain connections, trying to get to sleep (which YES is one of the purposes of breastfeeding.)

If you just think breastfeeding is about food and calories (and “quick, measure the gap between breastfeeds!”) you are doing a nature a huge disservice.

And you want to use an app on your phone to measure all those different reasons why a baby comes to the breast? You’re measuring fairy dust. Do you count all the times your partner cuddles you, strokes your arm, kisses you, smiles at you affectionately, communicates with you, has a drink of water, eats a snack, has a meal? You wouldn’t find an app for that and if you did, it would probably flag you up as someone needing some urgent assistance.

Stop thinking about minutes. No one can tell you a baby should feed for X number of minutes because we all have different physiology and our babies do too. Create your world around you so you can meet your baby’s needs in the way they are asking you to. Don’t try and mould your baby to fit into a world that has become obsessed with counting and measuring. If you know you are routine person and you are struggling with a feeling of ‘losing control’, give yourself a few weeks and see how it feels to trust your baby. Once your milk supply has maximised, you’ll have some options. Try and ‘control’ too early and you’ll find things go out of your influence in ways you can’t come back from easily.

Get help if things feel wrong- if breastfeeding hurts, if you’re not sure about weight gain or nappies, if you can’t work out how to meet your own needs for food and sleep. There are lots of people who will help out and we’re at the end of a phone or a Twitter account or Facebook page. But don’t confuse your baby behaving unexpectedly for something going ‘wrong’. Maybe no one told you what normal would be.

If we let normal happen it WILL make all of your lives easier in the long term.

You’re creating a little person who enters this world with their needs being met – we call it love.

Emma Pickett IBCLC
ABM Breastfeeding Counsellor

abm is kindly sponsoring Emma’s session at Growing Families – http://abm.me.uk/

References:

  1. https://www.isisonline.org.uk/where_babies_sleep/parents_bed/
  2. http://www.ncbi.nlm.nih.gov/pubmed/17700096
  3. http://www.llli.org/sweetsleepbook
  4. http://www.emmapickettbreastfeedingsupport.com/twitter-and-blog/the-dangerous-game-of-the-feeding-interval-obsession
  5. http://www.unicef.org.uk/BabyFriendly/News-and-Research/Research/Miscellaneous-illnesses/Review-of-dummy-use-and-its-potential-impact-on-breastfeeding/

 

Helping children to develop a secure attachment

As well as blog posts from our speakers, sponsors and conference organisers, we will also be sharing posts from selected Growing Families supporters in the lead up to our event in Manchester on Thursday 6th October.  Growing Families: Facts, Fiction and Other Stuff is a not-for-profit event, created by four mothers, two of whom are also healthcare professionals. Our mission is to tackle the postnatal information that desperately needs covering for new families; to explore expectations and evidence around the early days with baby; and to give new families the confidence to face the challenges ahead.

To book your place please click here, or please register your interest on our Facebook event here: https://www.facebook.com/events/1069072863167826/

This post is from Dr Rebecca Johnson, Consultant Clinical Psychologist, Solihull Approach, Heart of England NHS Foundation Trust.  Our thanks to Dr Johnson for her support for Growing Families.

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Being married to a Clinical Psychologist it was inevitable that emotional health was going to be high on our list of aspirations for our children once my husband and I became parents. Isn’t it for everyone? But for us happiness is not the measure we are aiming for.  It may sound a bit dull by comparison but above all we hope to be able to raise ‘securely attached’ human beings with the ability to ‘regulate’ their emotions!

I was already working with the Solihull Approach team before becoming a parent myself so, on top of my Clinical Psychology training, I had a good grounding in some helpful psychological theories. Containment and Reciprocity are two cornerstone theories of the Solihull Approach model, and are considered to be the building blocks of secure attachment.

But knowing what to do and actually doing it are not the same thing! This is perhaps because, unlike any other job, parenting involves our whole self, all our emotions, our own histories, with barely conscious instinctive responses coming into play? So the support of others who, either instinctively or through appropriate training, are able to help us with our own emotional turbulence so that we can better tune in to our children,  are highly valuable in helping us provide the foundations for a secure attachment.

What is attachment?

Kadie and Lilly

The brain has an incredible design feature which is its ability to adapt to the environment once launched into the outside world. This includes the capacity to be sociable from the ‘get go’, the ability to read cues in those around us and to adjust its responses and behaviours accordingly. All designed to maximise chances of survival and get the best out of the care on offer locally.

Over the course of the first year of life, if we’re lucky, the brain can get organised. Which means it learns ‘if x, do y’ and begins to be able to predict what might happen next. In an ideal world the baby learns for example – if I’m in pain and I cry in this way then my need for help and comfort are likely to be met. But it might be that the care on offer is not very responsive and the baby may learn to cope, if their needs are not met, by switching themselves off (dissociating) from feeling overwhelmed. Even worse there may be a risk of out and out hostility from a carer, in which case the safest thing to do might be to keep a low profile – if I’m in pain switch off, don’t cry and I might not be yelled at. Other babies who receive a mixture of comfort at times with hostility at other times, may switch off emotionally in part whilst still trying to signal that they have needs – I’m hungry so I’ll cry but I’ll keep myself ready in case you’re not in the right mood. Different strategies suit different kinds of care available. It’s not hard to see which of these pattern is healthiest in the long run but the point is the strategies are designed to keep us ‘safe’ physically and emotionally in the particular environment in which we are being raised.

These organised patterns of responding are referred to as Attachment patterns: ‘secure’, ‘insecure avoidant’, and ‘insecure ambivalent’. If you’re really unlucky the care on offer is so unpredictable that it is hard to muster an organised response and chaos ensues, or, according to Pat Crittenden, it becomes necessary to flip between different strategies in order to find one that might work this time. This is known as a ‘disorganised’ attachment pattern and is generally thought to be behind the most challenging patterns of behaviour in older kids and adults.

There is no such thing as not being attached. Some patterns are considered healthier than others. It’s much better to be organised, and secure attachments are associated with better outcomes in life generally.

The word ‘attachment’ is often used loosely or colloquially, to refer to how warmly people feel towards one another, for example, a child might say ‘I love my mum’ and in layman’s terms we might describe this child as attached to the mother. Or it tends to be used as an alternative to the word ‘relationship’. But in fact it is only one part of a relationship, and, being a pattern of behaviours that are evoked in response to threat, is not observable just by looking at a parent and child interacting. In fact a child who appears happy and smiley with their parent may have learned to present themselves in a certain way in order to protect themselves, but it doesn’t follow that they are securely attached. David Shemmings describes this in more detail here. www.theguardian.com/social-care-network/2016/feb/15/attachment-theory-social-work-child-protection

Bonding and attachment are related but not the same. Bonding refers to the feelings of the parent towards the child. For some parents this is instantaneous, for others it may take a while to come. A strong bond helps the parent feel driven to meet the child’s needs and in this way it contributes to the child being able to develop a secure attachment pattern.  So you could say parents bond, infants attach!

Why does attachment matter?

Once we become mobile our attachment to our carer helps with our continuing learning and development. We are able to explore the world if we know that we have a secure base to come back to. Trust that we will get a helpful response from our carer if we encounter something worrying or dangerous enables us to manage the enormity of the world that is opening up.

But the really significant thing about the patterns that we establish in our first year is that they set the tone for our future relationships. In the same way that the brain has a window for learning a native language, it also has an area receptive for learning the language of relationships. Whilst this can be overridden later, the fluency acquired in the beginning – whether helpful or unhelpful to us in later life, is what we fall back on instinctively when responding to people for the rest of our lives.

When we become parents our own attachment patterns emerge strongly in our instinctive responses – only this time we are on the caregiver side of the equation. It is actually possible to predict a baby’s attachment pattern by looking at the pattern of his or her parents. But there is no inevitability about it. Bad things happen to securely attached parents that interfere with their ability to meet their babies’ needs, and insecure or disorganised attachments can be mediated by other relationships in our lives, a responsive grandparent, a caring teacher, even a secure partner.

What are the secrets to nurturing secure attachments?

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There is lots we can do to help babies develop a secure pattern, or in other words help them trust that on the whole their carer is available, keeps them in mind and is capable of doing a good enough job of meeting their needs. Personally I take great comfort in knowing that a secure attachment pattern is not based on perfection, generally being responsive alongside being able to repair when things go wrong, as they inevitably will, is all that’s required.

Babies are born ready to attach; they become accustomed to their mothers’ smell, voice and taste of milk before birth; they have a strong preference for human faces; they seek out eye contact; they have an innate ability to copy expressions.

It is widely accepted that key ingredients in the adult carer include a) being available in body and mind to think about and meet the baby’s needs, and b) a willingness and ability to try and interpret the baby’s signals.

Sounds easy right? Well no, actually. Being available is a real challenge when you are facing the stresses and strains of becoming a parent. It is easy, and perfectly normal, to feel completely overwhelmed by powerful feelings, be it anxiety, fear, exhaustion, isolation, or even some ghost from our past that sees the transition to parenthood as the perfect moment to pop up and wreak havoc with our emotions.

What can help is someone who listens without judging, or even advising, but just listens carefully and shows us, by their own thoughtful handling of the feelings we convey, that these feelings can be tolerated and won’t destroy us. Bit by bit we can start to regain our capacity to think, and as the panicky part of our brain (the limbic system) calms down, the availability of the thinking part of our brain (the cortex) comes back online and is more available for the baby. This process is called Containment in psychotherapy terms but it happens spontaneously many times a day for many people, between friends, partners and hopefully when reaching out  for support from professionals.

The second ingredient is known as Reciprocity. This refers to the two-way dance of communication between carer and baby. It requires: sensitivity to the baby’s individual body language, mood and temperament; slowing down to give the developing brain time to process; the opportunity for the baby to have his turn in an interaction and be an active part in the relationship; being a partner in the dance between you, not just doing unto or not doing at all. Not too little, not too much.

Successful two-way interactions are beautiful to behold, there’s turn taking, mutual enjoyment, a rise and fall of excitement or interest and a gradual winding down and withdrawal before it starts again. This type of interaction is ordinary, everyday.  But again not so easy if you feel so low that taking care of physical needs (yours and the baby’s) is barely manageable, or if you are overwhelmed and stressed. It may be that you did not experience these types of interactions in your own infancy, so have less to instinctively draw on.

You might be a parent reading this. What opportunities do you have to make use of someone else’s brain capacity when yours is overloaded? Reach out, ask for help. It’s amazing how a listening ear can help put things back into perspective, even before solutions are offered. You may like to spend time observing your baby. See if you can spot ways in which he or she starts a ‘conversation’, notice how involved they are in it, and ways in which they withdraw their attention and ‘turn away’ to process what just happened.  Zero To Three have a really nice video about the importance of everyday interactions here https://www.zerotothree.org/resources/230-responsive-care-nurturing-a-strong-attachment-through-everyday-moments

You might be reading this as a professional. Think about the relationships you support. What opportunities do you have to promote secure attachments? This could be in the course of conversations about other things, for example you may be a midwife, a teacher, an infant feeding supporter, a health visitor, a sonographer, a childminder… Can you resist the urge to ‘fix’ the situation and offer a solution? How would it feel to sit with and ‘contain’ strong, powerful feelings? How can you access support when you yourself feel overwhelmed? Advice is invaluable but ideally comes at the end of a process of understanding where this parent and this infant are at. That way it becomes tailored, individualised and more likely to hit the spot.

The Solihull Approach helps parents and practitioners by providing a framework for thinking about relationships, and incorporates Containment and Reciprocity, the building blocks of secure attachment, along with Behaviour Management, into a practical and helpful model. There are evidence based, quality marked face to face and online courses for parents (Antenatal, post-natal and 0-18 years) based on these key ideas www.inourplace.co.uk as well as a range of training courses for professionals www.solihullapproachparenting.com. @solihullaproach

 

Dr Rebecca Johnson
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