CdLs UK and Ireland

Teenagers and young adults with CdLS have a special treat in store as part of the social research the Foundation is carrying out alongside Birmingham University.

There will be three separate days out in the midlands, the south east and the north of England where the young people will visit with Birmingham research psychologist Lisa Collis and team.

“We have run a couple of events in London and at the meetings at Telford and Cambridge,” said Lisa. “We now thought we would try to spread them out regionally so we can involve a few more people.”

The idea behind the work is to encourage young people with CdLS to make friends with each other and to allow the Birmingham team to monitor any of the challenges the young people face in making friends or generally taking part in social activities.

“When we did the first one we saw lots of signs of nervousness and the young people with CdLS wanted to talk more to the helpers than to each other. By the time we did the third event some of them were joining in much more and talking to each other.” Lisa said.

“We know anecdotally that there are a lot of issues around the transition into adulthood and what Chris Oliver has described as ‘low mood’. We want to see if we can create a strong peer group and help the young people make friends with each other and get to socialise together at CdLS events.”

Foundation chairman Alan Peaford said that the project was vitally important. “Ultimately we know that CdLS adults will need support from the Foundation and each other.

The more we can get them involved with the Foundation then the better we will be equipped to meet their needs.

If they make friends and then find value in coming to our events then we will learn from them. At the same time Lisa will be helping them identify some of the problems they have faced when going out.

By joining in with others they are in a safe group.
The three days-out have all been sponsored by the Foundation from fund-raising events.

“The CdLS young people have enjoyed the earlier outings and we have already learned a lot.

I would encourage families to make the most of this opportunity and sign up for the day.”

The events are aimed at the more able CdLS young people who are able to communicate needs to the helpers and each other.

They will probably be aged between 15 – 25 and be happy(ish) at going out without their parents or carers.

All three of the events start at 10am and it is the responsibility of the families or carers to get their CdLS person to the venue.
Once there the cost of entry, activities and lunch is paid for by the Foundation.

The first of the three events is at Hatton Country World near Warwick, on Thursday 23rd August.

The group will look at and feed animals including, Guinea Pigs and real pigs watch an owl and falconry display, ride on a tractor and get a chance to make pottery. The day will finish at 4.30pm – giving the parents and carers the chance to take a break nearby.

The South East England event is at Barleylands Farm, Billericay, Essex on Tuesday 28th August

The youngsters here will go to the farm centre and touch and feed various large and small animals: take a tractor and trailer ride go to the pottery shed run by the world famous Hazle Ceramics and paint a plate, cereal bowl or mug.

The craft work continues with a visit to the card making studio and the chance to make some cards

Finally there will be a day out for people in the north of England at the Blakemere Craft Centre. Northwich, on: Friday 31st August where youngsters will visit the Owl and Hawk Aviaries: and see Flying Displays before going on to paint a plate, cereal bowl or mug in the pottery sheds.

There will also be the chance to visit the aquatic centre and see the many fish on display.

There will be a further social event in Scotland when the Foundation meets in Edinburgh in October.

Any families who would like to take part and have not already been in touch with Lisa Collis should contact Lisa on e-mail: lkc074@bham.ac.uk or by telephone on 0121 414 2942) to book their place at the event or discuss the suitability of their child for attending the event.

Birmingham project expands

The University of Birmingham research team is now well underway with its research project about challenging behaviour and family wellbeing in children and adults with Cornelia de Lange, Angelman and Cri du Chat syndromes.

“The research team has now expanded to include research teams in both London and North Wales so that we are now able to get in touch with more families and children around the UK,” says project leader Professor Chris Oliver.

But this project – funded by the Big Lottery Fund – needs involvement by our families if it is to be successful.

In this project we are inviting children and adults aged between 4 and 19 years who are showing aggressive or self-injurious behaviour at least once a day to take part in the study.

At this stage we would simply like to inform you of the study and ask any families of children and adults who are engaging in these behaviours to get in touch with us.

How do we define aggressive behaviour? Aggressive behaviour includes any behaviour which may cause physical discomfort or possible harm to another person including hair pulling, grabbing, scratching, pushing, kicking, biting, hitting etc.

It may well be that the person doesn’t mean to hurt others or is too small to hurt others. For this project we would still be interested in hearing from you.

How do we define self-injurious behaviour? Self-injurious behaviour includes any behaviour which may cause physical discomfort (including reddening of the skin or bruising) or harm to the person such as picking, biting, tapping, hitting, banging, scratching etc.

If the person you care for shows either or both of the above behaviours at least once a day or they show something like self-injury or aggression but you’re not sure if they could be included, then please contact Professor Chris Oliver at the University of Birmingham on: 0121 414 4909, via email: c.oliver@bham.ac.uk or post: Professor Chris Oliver, School of Psychology, University of Birmingham, Edgbaston, B15 2TT.

Alternatively, please contact Karen Kings (administrator) at the University on: 0121 414 4908 via e mail: k.s.kings@bham.ac.uk