Supporting Additional Needs Families
The road to acceptance can be a long one for families of children with additional/special needs or disabilities. Some can reach it more quickly than others, some struggle to get there at all. There are many stops along the way where parents and other family members can get ‘stuck’.
To help us understand a little of what these families can experience, as well as maybe how we can help, here’s a quick guide to ‘the road to acceptance’ written from my own experience as an additional needs parent. Everyone’s experience is different, just as all of our children are different, but perhaps my family’s story will give you enough of an insight into our world to help you to help others…
Pre-diagnosis – worry
Is there something wrong? Those nagging doubts that families start to get; are they just being paranoid? What might be wrong? Is it serious? How do they find out? Who do they ask? Are they really ready to know? Secretly, are they avoiding this? Eventually, they ask, or someone else asks, and they start to find out… and it can often take ages!
In our case, we noticed that James was not developing as fast as his older sister, Phoebe, had. At first, we put it down to boys not always developing at the same speed as girls. Then we had some hearing tests done (which James initially failed spectacularly… until we realised he had an ear infection at the time!) Bit by bit things got ruled out until we finally got a diagnosis.
Make comparisons with other children. Make negative comment about their child's development. Criticise their parenting. Make unqualified 'diagnoses'.
Say encouraging things about what their child can do. If tests or medical appointments are arranged, offer support if appropriate to do so. Be willing to listen to their concerns.
Diagnosis – shock
What does this mean? They may not understand… so many questions… how did this happen? Was this their fault… are they to blame… did they do something wrong? Why did this happen… why them… why not somebody else?
Suddenly they are faced with the loss of the future plans and dreams they had for their child, for their family, for themselves… it all lies in tatters… it can be devastating. They grieve for what is lost.
When we received James’ diagnosis, he was only 2½ years old. It was a hammer blow to us all as we tried to understand what we had just been told; that James is Autistic and has Learning Disability (he has since added Epilepsy to his collection). Looking back now, we realise that we were experiencing grief.
Parents of children with additional/special needs or disabilities will experience this grief too, going through the various stages, maybe getting stuck at one of them (‘denial’ for example). Sometimes, just when they think they have made it to ‘acceptance’, something happens that spins them back to the beginning all over again. It’s like a perverse, never-ending, game of ‘snakes and ladders’.
Say that they must be 'special' parents to receive a 'special' child. Blame the family for their child's disability. Compare their child to someone else's you know. Avoid them.
Offer practical help e.g. meals. Sometimes there are no words, but just being there can be a huge help. Introduce them to other families at church who have children with a similar diagnosis.
Five stages of grief
Denial/isolation – overwhelming emotions, 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.
Anger – reality and the pain of the diagnosis breaks through their denial; it can burn deep and cause them to lash out at those trying to help. It can be terribly destructive and can and does cause relationships to fail… 56% of families with a disabled child have major or significant relationship difficulties or breakups.
Bargaining - “If only we had…” trying to rationalise it, trying to regain some control of the helplessness and vulnerability they feel. If they have a faith, they might try doing a deal with God “If you make this go away I’ll…” trying anything to protect themselves 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.
Acceptance – not a gift received by everyone. It’s not about being brave, but a gradual sense of understanding the emotions that they are going through, of the changes that the diagnosis will bring for them, for their child, for the rest of the family, and a growing desire to move forward and make the best of things. Things will be different, but they can still be OK… They are ready to embrace not what might have been… but what is…
Say they are 'brave', or an 'inspiration' (they won't feel like it). Tell them to move on or 'pull themselves together' (they can't). Try to answer their questions about why God has let their child be disabled (we don't know).
Be there for them. Listen to what they have to say. Pray for/with them for God's presence to be with them. Cry with them and let them know that God cried with them too. Give them information about Care for the Family's befriending service, which links families to others nearby who are on a similar journey, as well as information about the 'Additional Needs Alliance' Facebook group and other similar support networks we might know.
What else can we do?
I have found ‘Welcome to Holland’, the story by Emily Perl Kingsley, a real help and have often passed it on to other families as well as children’s and youth workers. Families have experienced a change of destination; they have ended up somewhere they didn’t expect or initially want to go… how will they respond? How will it affect them?
Will they let this diagnosis be a negative drain on their lives? Stuck at ‘Denial’? ‘Anger’? ‘Bargaining’? ‘Depression’? So many are still there… where are the families that you are alongside? Or will they be able to use this diagnosis as a positive turning point for their lives? Having reached ‘Acceptance’, embracing what is, rather than what might have been, and if so to think about what they are going to do. How will this define them, and how can we support them going forward.
Encourage them that they do not go through this alone; we are with them and God stands with us. As he said to Joshua, he says to us “Be strong and courageous. Do not be afraid or terrified… for the Lord your God goes with you; he will never leave you nor forsake you.” Deuteronomy 31:6. And as he says to all of us; “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11
So, let’s all go on the journey to discover that hope and future together shall we?
Mark Arnold (The Additional Needs Blogfather) is the Additional Needs Ministry Director for Urban Saints’, Co-Founder of the ‘Additional Needs Alliance’, contributor to a range of publications, and dad to James a 17 year-old Autistic, with Epilepsy and Learning Disability.