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Fathers Day - by Mary Cole. Fathers are often over looked when a child has a disability. Mary looks at why this is, and what needs to change. Picture is of Ben having a cuddle with his dad.

Fathers Day

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This year, Father’s day has fallen at the end of Carers’ Week. Quite significant, I believe even though it is a coincidence. Parent carers who happen to be fathers are very under-represented and lacking in support. This needs to change.

Nothing prepares you for the way parenthood changes your life. How amplified this is when your child has a disability. Sometimes it is described as a type of bereavement when a parent is faced with their child’s diagnosis. Having experienced the shock of an unexpected diagnosis and bereavement, I think this is a sound analogy. However at peace you are with your child’s diagnosis in the long term, a period of readjustment occurs when you mourn for the loss of the life you were expecting.

This is how it was for us when we were told three days after our son was born that he has Down’s Syndrome. The news was delivered rather clumsily, but certainly with more sensitivity than some other parents who are given the same news. I am grateful we weren’t given the long list of ‘things your child may never do’ which seems to have been the standard way of delivering a diagnosis of Down’s Syndrome in the past.

Our Story

When we were told of Ben’s diagnosis, Jason sat in a chair sobbing. I went completely numb and found it difficult to take in what was being said. We had been ushered into a side room where we stayed for our remaining time in hospital until we could take Ben home. Away from all the other parents and babies, a powerful symbol that our lives would be different and apart. That said, we were grateful for the privacy and Jason was provided a z-bed so he could stay with us. This was a really important time for us actually as it did give us an opportunity to have some space before having to deal with what proved to be a difficult aspect of Ben’s disability – coping with other peoples’ reaction to our son.

Jason did go home for a bit before we were discharged, and this was so he could tell his parents in person of the diagnosis. It was during this time, that Jason phoned around our relatives to tell them. This was such a hard thing for him to do, all the more so because he was so fragile after the shock of Ben’s diagnosis. He was met with kindness and support at every turn by our family, but despite this it was a profoundly difficult thing for him to do.

Hurdles

Ben was delivered by caesarean section so I was in recovery from major surgery when we took Ben home. This meant certain tasks fell to Jason in those first few weeks. It was a while before I could drive or walk any distance so it was Jason who did all the shopping in the village and other errands.

Fortunately, a good friend of ours went with him the first time he did the school run with our daughter so he didn’t have to face the other parents alone. Mostly, people were very supportive but of course we were met with a lack of understanding by some. I was stunned one day when I was phoned up by someone in the village who I hardly knew who felt it acceptable to ring up to say how ‘sorry’ she was about Ben.

What we so needed to hear at that point was actually ‘congratulations’.  Going back to work was another hurdle as it was for me, but at least I had the time to readjust more fully with several months at home on maternity leave. Jason was back at work within days of Ben’s diagnosis which was an added pressure for him.

 

Support Network

When Ben started school, I feel like the rug had been pulled from under my feet. This was because I had suddenly lost my main support network. We don’t have any family living close by so our network of friends is incredibly important to us.

Before Ben started school, we had regularly attended a local playgroup for disabled pre-school children and another group for hearing impaired children. These groups were so important as they provided a safe environment with appropriate activities for our children and I got to meet other parents – the vast majority of whom were mothers. And it gave me the chance to meet with other people who ‘got it’. We had shared experience of what it’s like to have your life dominated by endless appointments and therapies, form filing where you have to focus on all the things your child struggles with, not to mention the demanding day to day care needs of a young child – challenging enough with any child, but add into the mix medical and communication needs and little sleep. This is not the experience of parents of a typically developing child and to be around other parents in the same situation was so affirming.

We laughed and cried together and firm friendships were forged at those groups. I missed this greatly when Ben started school. It was wonderful that our local Down’s Syndrome support group (for babies and toddlers) was on a Saturday so Jason was able to attend these groups, but the fact is that due to his work commitments, he couldn’t access the support I had with Ben’s mid-week groups. The solution to finding support that dads can easily access isn’t straightforward. Evenings are a demanding time in a family with a disabled child. The bedtime routine can be much more involved than it is for a typically developing child. This makes evening meetings far from ideal for either parent. Many support groups take place during the day, and whilst there are many different patterns of working for both parents when you have a disabled child, I suspect the reality for many families is similar to what we experienced. Ben’s dad couldn’t access much of the support available due to his work commitments.

Providing support to fathers is vital. It is thought that around half of all parent carers experience mental ill health, often depression or anxiety related conditions. With all the emphasis in society at the moment  of on the importance mental well-being, surely now would be a good time to examine how this can be promoted for parent carer fathers. It’s only recently been recognised that post-natal depression is a reality for many fathers as well as mothers. The same recognition is long overdue for the needs of parent carer fathers.

Read more of Mary’s blogs:

World Down Syndrome Day 2019

10 Year Challenge

Sleep – by Mary Cole

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