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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