Additional or special needs parenting is tough, with so much more to cope with than many other families have to deal with.  The stresses and strains of parenting a child with additional needs are 24/7 all year every year and added to the anxiety and even guilt that many parents will experience it can all add up.  But does this make it more likely that families where there is a child with additional/special needs or disabilities will fall apart under the pressure?

Well, 53% of families claim that having a disabled child causes some/major relationship difficulties or breakups (source: About Families)[1], which is considerably higher that the population in general, suggesting that there could be a link between being an additional needs parent and family breakup.

What are the triggers for this, and is there anything that church can do to make a difference in this vitally important area?

Pre-diagnosis – worry
In the early stages there is the trigger for relationship breakdown as we are struggling with understanding what is going on with our child.  Is there something wrong?  Are we just being paranoid?  What’s wrong?  Is it serious?  How do we find out?  Who do we ask?  Do we want to find out?  Secretly, are we avoiding this?  This period of intense uncertainty can be really difficult relationally, perhaps opening up cracks that were already there, perhaps opening up new ones as so much focus is on our child and not on each other.

The church can make a difference here by pastorally supporting families going through this phase, helping them to get answers, standing with them practically as well as in prayer.  Helping couples to keep investing in their relationships as well as seeking answers about their child.

Diagnosis – shock
Then we get a diagnosis for our child.  In some ways it is a relief as at last we know what we are dealing with, but then a whole bunch of new questions come to us.  What does this mean?  We don’t understand… how did this happen?  Was this our fault… blame… did we do something wrong?  Why did this happen?  Why us? Why not somebody else?  Why were we that 1%?  Suddenly we are faced with the loss of the future plans we had for our child, for our family, for ourselves… it all lies in tatters.  It can be devastating, we grieve for what is lost… and can turn on each other.

In those times the church can help by suggesting ways that parents can talk to someone, ideally someone who has been in the same position as themselves, someone who gets it and can listen but can also show that there is hope for the future.

Care for the Family have their excellent befriender service which matches families up with people who can chat with them who have experienced similar situations themselves.  Churches can also signpost families towards churches that connect with ‘Take 5 and Chat’, a way of linking families that are on the same journey and bringing them together for mutual support (and cake!)  Parents often feel excluded from a wide range of social activities (source: Mumsnet)[2] and so offering services like this can be life (and relationship) saving!

Care for the Family befriender service:  https://www.careforthefamily.org.uk/family-life/parent-support/parenting-additional-challenges/additional-needs-support/additional-needs-support-for-you
Take 5 and Chat:  http://www.take5andchat.org.uk

Five stages of grief
Most families that include a child with additional needs or disability will go through the five stages of grief, often many times.  This is a natural response to some big life changes but it can be overwhelming for many families, and a real trigger for relationship breakups.

  • Denial/isolation – overwhelming emotions, the inability to control them, fight or flight instinct kicks in… denial of the situation, blocking it out, hiding from it and hoping it just goes away.  It’s not unusual for families to split apart at this point.
  • Anger – reality, and the pain of the diagnosis, breaking through our denial.  It can burn deep and cause us to lash out at those trying to help us.  It can be terribly destructive and can and does cause relationships to fail.
  • Bargaining – “If only we had…” trying to rationalize it, trying to regain some control of the helplessness and vulnerability we feel.  If we have a faith we might try doing a deal with God “If you make this go away I’ll…” trying anything to protect ourselves from the painful reality.
  • Depression – sadness and regret about the lost dreams, a deep sense of mourning for what is lost… coupled with a gradual and profound realisation that this isn’t going away.  Couples can easily drift apart here as they become immersed in their own feelings.
  • Acceptance – not a gift received by everyone.  It’s not about being brave, but a gradual sense of understanding of the emotions that we are going through, of the changes that the diagnosis will bring for us, for our child, for the rest of our family, and a growing desire to move forward and make the best of things.  Things will be different, but they can still be OK.  We are ready to embrace not what might have been, but what is.

There is a great story told by Emily Perl Kingsley that helps us to understand this cycle of grief and to see that there is hope.  https://www.youtube.com/watch?v=r15PuYoID94

Churches should also help and support families going through this cycle, offering counselling and pastoral support, and again linking families in to some of the services mentioned above.

Ongoing support
It is vital that churches look to provide ongoing support for families with children who have additional needs or disabilities.  It is so important that churches look beyond simply including children in Sunday School for an hour a week, or in the mid-week club night, but work with families to see how the church can stand with them and support them in other ways too.

  • Can the church offer childminding services free of charge so that parents can go out and invest in their relationship?
  • Could the church offer regular pastoral support so that when it’s 2am and everything has fallen apart and everyone is finding it all too hard there is someone they can call just to talk and that that’s OK?
  • Could the church get Dads together to share their experiences and stories, to help each other to know that they are not alone, not the only ones dealing with stuff.  Statistically, if a family with a child with additional needs or disability splits up, it’s almost always Dad that leaves; what can we do to hear from Dads and help keep them in the family?  Again Take 5 and Chat offer a Dads service, or churches could contact Who Let The Dads Out https://www.wholetthedadsout.org.uk
  • And if the family has already split up, and Mum (as is usually the case) is trying to cope on her own, how can the church offer practical support to help her get everthing done without having a breakdown herself?  Are there people in the church with practical skills that can help out?  Can some free childminding be arranged so she can meet up for some social time with friends, or go to the gym?  There may be financial pressures too, could the church signpost her towards support here e.g. Christians Against Poverty https://capuk.org

We started by asking the question ‘Are additional/special needs families more likely to break apart?’, and the answer is yes, but surely we don’t have to settle for that do we?  There is plenty we can do to understand the stresses and strains that families face, and to support them through these tough times with practical, emotional, and spiritual support.

Who do you know in your church that you could help?

 Mark

Mark Arnold
24th May 2018

See also:  ‘Additional Needs Parents; Disrupted, Resilient, Vulnerable, Broken, Loving’  https://theadditionalneedsblogfather.com/2018/05/11/additional-needs-parents-disrupted-resilient-vulnerable-broken-loving/

[1]‘Together and apart: supporting families through change’ (2011)
http://www.capability-scotland.org.uk/media/101061/about_families_report_2_change.pdf %5Baccessed 1st August 2017]

[2]‘Mumsnet parents: negative attitudes are holding back our disabled children’(2014) http://www.scope.org.uk/About-Us/Media/Press-releases/February-2014/Mumsnet-parents-negative-attitudes-are-holding-bac [accessed 17th November 2016]

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