Angela celebrates her wonderful daughter and helps other mums

Angela celebrates her wonderful daughter and helps other mums

30 November 2011 - by CIARA COLHOUN

THE diagnosis of a child with special needs is often a traumatic experience for parents.

For Downpatrick mum Angela Orr, the weeks following the diagnosis of her baby daughter Clare with Downs Syndrome in 1989 were very difficult.

Angela gave birth to Clare in Downpatrick Maternity Hospital on April 3 of that year, but her baby was so ill she was immediately rushed to a Belfast hospital.

Shortly afterwards, after learning of Clare’s diagnosis, Angela discharged herself from hospital so she could be at her bedside. And so began a lifetime of care with a mother’s love.

Looking back over the past two decades, Angela says she wishes there had been a support group for mothers like her who often go through a grieving period as they adjust to life with their special needs child.

She is now a key member of such a support group, the Downpatrick-based MUMS (Mums Understanding Mums), which she helped found 10 years ago to offer friendship, advice and a social outlet for mothers with special needs children.

When Clare was born, Angela admits she had never known anybody with Downs Syndrome and had little information about the condition, save for some daunting advice offered by a regional support group warning her that people would probably cross the street to avoid Angela and Clare in the future.

But she refused to listen to such negativity and instead treated Clare like her other child, bringing her out with her wherever she went.

She quickly learnt that people were “quite the opposite” of what she had been told to expect and instead of walking away from her baby, they delighted in her.

It is lessons like this that Angela believes MUMS can pass on.

“Clare was so ill she had to be taken to Belfast and I clearly remember her being rushed away although I had no idea why at that time,” she recalls.

“She was in hospital for six weeks. It was a very emotional time because she was so sick.

“I did not know what Downs Syndrome was or what was associated with it and we later learnt Clare had a heart condition.

“She had a heart operation on Valentine’s Day 1990, which was very traumatic. At that time I would have loved to have a group like MUMS to fall back on.”

Angela says she went through a bereavement process following Clare’s diagnosis, grieving for the child she had envisaged and adjusting to the new reality.

But over two decades later Clare has now developed into an active and lively young woman who enjoys two work experience positions in Downpatrick and is also an active member of the local Dramability Group. Angela, meanwhile, has taken early retirement from the health service and is now a volunteer for Dramability as well as being involved in MUMS.

As one of MUMS original members, she hopes she can help some of the newcomers to the group, who are often struggling with issues she dealt with 20 years ago.

“It was a traumatic time then because I was going through the stages of grief and wondering if I could manage, if I could return to work and how would we pay our mortgage. Would life ever be the same again?

“And in some ways those questions remain. When Clare finished school at 19, I pictured where her brother was at that stage, looking at universities.

“No matter what age they are, you still think of what could have been.

“That is why MUMS is so helpful. There are mothers at all different stages who have great experience.

“Sometimes the children that are worrying us most are not the ones with special needs. We sit around on sofas and enjoy a chat for an hour or so. It is such a great support.”

MUMS meets in the Sure Start centre in Downpatrick once a month and new members are always welcome. The group meets in an informal setting and enjoys a number of social events throughout the year.

For more information or for details of the next meeting please telephone Aleida Millar on 028 4483 1778.