St Luke's Church Eccleshill - Articles from "The Link"

In our "Questions to the clergy" slot, John will try to answer any query you throw at him, without hesitation, deviation or repetition...

How do I show I care?

Q. A couple in our church (not St Luke’s) have just had a baby with Down’s Syndrome*. How do you suggest we can be a help?

A. You must excuse me speaking personally about this one, as my son Peter has Down’s Syndrome (maybe that’s why you asked me?). Everyone is different: one person’s expression of concern may come across as caring, and another’s may seem like intrusion; but these are some of the things I remember from Peter’s birth.

The birth of a handicapped baby is a bit like bereavement in that all one’s hopes and dreams of the future are shattered, and one grieves the “normal” child that one will now not have. Like anyone else who goes through a bereavement, I welcomed people saying how sorry they were, I appreciated offers of practical help (especially meals and babysitting when my wife was in hospital and I still had work to do), and I liked people including me in ordinary conversation and not avoiding me. It didn’t matter that people didn’t know what to say - I didn’t know what to say either!

I did not welcome “amateur theology” - people telling me “God only picks specially good people like you to look after his little angels” and other such rubbish. Nor did I appreciate attempts to look on the bright side of life: “Never mind, they are such loving children,” or “I knew one girl who turned out ever so well.” Such remarks don’t help. A golden rule is: try not to imagine what you might feel like, but instead try to listen to what I am actually feeling like. Empathy is about making a genuine effort to understand the other person, and resisting the temptation to project your own reaction onto them.

After the initial shock (which lasts quite a few months), these are some things that helped me:
• other parents’ experiences,
• the local Down’s group,
• books on Down’s Syndrome,
• physio- & speech therapists,
• the creche at church,
• friends learning Makaton**,
• houses without ornaments,
• safe & secure places to play,
• a child-friendly local church.

To summarise, it was helpful when people tried to learn a bit about Down’s Syndrome and put it into practice. For instance, most children learn not to play with ornaments, but Peter never learnt that. A caring friend would remove the ornaments instead of expecting me to defend their house from my child.

John Hartley

*You can find out more about Down's Syndrome at the Down's Syndrome Association's web site at www.dsa-uk.com or by asking the vicar.

**Makaton is a simplified version of British Sign Language especially for use with those who have learning difficulties. You can find out more about it at www.makaton.org or by asking the vicar.

	*St Luke's Church, Eccleshill - The Link* magazine** The Link is published monthly at 40p (Senior Citizens 35p), and we deliver free within the parish and post copies (at the reader's expense) to those who request it. Please contact us if you would like a free copy for a trial period. February 2001, Page 8.
Home Page. Index of articles. Questions: index, Why marry, Christenings, Mission giving, Homeopathy, Downs baby, Bloodthirsty OT. In this issue: (February 2001) Vicar's Letter, The PCC, Confirmation, Question. More info: Down's Syndrome Makaton	In our "Questions to the clergy" slot, John will try to answer any query you throw at him, without hesitation, deviation or repetition... How do I show I care? Q. A couple in our church (not St Luke’s) have just had a baby with Down’s Syndrome*. How do you suggest we can be a help? A. You must excuse me speaking personally about this one, as my son Peter has Down’s Syndrome (maybe that’s why you asked me?). Everyone is different: one person’s expression of concern may come across as caring, and another’s may seem like intrusion; but these are some of the things I remember from Peter’s birth. The birth of a handicapped baby is a bit like bereavement in that all one’s hopes and dreams of the future are shattered, and one grieves the “normal” child that one will now not have. Like anyone else who goes through a bereavement, I welcomed people saying how sorry they were, I appreciated offers of practical help (especially meals and babysitting when my wife was in hospital and I still had work to do), and I liked people including me in ordinary conversation and not avoiding me. It didn’t matter that people didn’t know what to say - I didn’t know what to say either! I did not welcome “amateur theology” - people telling me “God only picks specially good people like you to look after his little angels” and other such rubbish. Nor did I appreciate attempts to look on the bright side of life: “Never mind, they are such loving children,” or “I knew one girl who turned out ever so well.” Such remarks don’t help. A golden rule is: try not to imagine what you might feel like, but instead try to listen to what I am actually feeling like. Empathy is about making a genuine effort to understand the other person, and resisting the temptation to project your own reaction onto them. After the initial shock (which lasts quite a few months), these are some things that helped me: • other parents’ experiences, • the local Down’s group, • books on Down’s Syndrome, • physio- & speech therapists, • the creche at church, • friends learning Makaton, • houses without ornaments, • safe & secure places to play, • a child-friendly local church. To summarise, it was helpful when people tried to learn a bit about Down’s Syndrome and put it into practice. For instance, most children learn not to play with ornaments, but Peter never learnt that. A caring friend would remove the ornaments instead of expecting me to defend their house from my child. John Hartley You can find out more about Down's Syndrome at the Down's Syndrome Association's web site at* www.dsa-uk.com or by asking the vicar. **Makaton is a simplified version of British Sign Language especially for use with those who have learning difficulties. You can find out more about it at www.makaton.org or by asking the vicar.
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