WSI News Volume 25. Issue 2 Autumn 2020 Covid 19 - Challenging Times Hello to all our members and gifts to the homes of paid up away recently. Desmond was Inside this Issue people with Williams members. Many thanks to very supportive in setting up Syndrome. Hopefully you are Fionnuala Tynan for her the charity from very small all keeping safe and well in inspired gift choices and we beginnings. Challenging Times 1 these difficult times. Sadly hope that everyone enjoyed their little surprise. As a registered Charity we are we have had to cancel all of required to hold an Annual Summer Camps on 2 our annual events for the WSI also managed to provide General Meeting every year. Line foreseeable future. We can some level of support online Due to the Covid 19 situation July Provision/ 3 only hope that the public during the year. health emergency is resolved we have made arrangements Special Education as soon as possible and we Thanks to Linda Kane we ran a for this year’s AGM to be held online. can get back to organizing WS Awareness Month Home Schooling a 3 events where we can meet in Facebook campaign in May Normally our Newsletter would Child with WS person again. which was wonderfully be filled with pictures of happy supported by our members. Desmond Guinness 4 In small recompense for these faces at many of our events cancellations the Committee In addition Fionnuala and Mary over the past year WS Awareness decided to distribute some Immaculate College provided So instead we thought we 5 online Camp sessions for all would include a picture of Month ages and by all accounts the some of our happy people My New Adventure 6 sessions worked very well. attending events over the last On a sad note our Patron 20 years or more. AGM Special 6 Desmond Guinness passed Hopefully we can get back to Arrangements those scenes again in 2021. Whatever happens we hope to stay in touch with the membership and to provide as much support as possible. In the meantime stay safe and take care, Stephen Langton Chairperson Apologies we did not have absolutely everyone’s picture to hand. If we missed you get in touch with a picture and you’ll be in the next issue WSI News Page 2 WSI Summer Camps Go On-line Fionnuala Tynan Parent Feedback Wednesday to Friday. The children were WILDLY excited “The whole family really to see one another every day “A huge plus enjoyed participating in the and it showed the importance was being in Baby Camp this year. I was of keeping them connected amazed at how well all the contact with through WSI events. children kept focused on other families at Fionnuala throughout the session! Izzy was really the same stage engaged with Fionnuala Parent Feedback of the journey throughout and even sang a “Katie was thrilled that the as us! Over all song by herself without junior camp went ahead via zoom as she was so bitterly it was a huge We were delighted to provide prompting! It was really nice Zoom based summer camps to also have her bigger sister disappointed that we weren't success and I travelling to Limerick this year. in view of the current in on the action too. A huge She was so happy to see all only wish it restrictions. We provided plus was being in contact with her friends on line. Fionnuala could happen three different options other families at the same showed her expert skills at depending on the age of the stage of the journey as more often”. engaging with the children family member with WS. us! Over all it was a huge success and I only wish it taking part each day and could happen more often”. keeping them interested and focused. It was a huge Baby Camp Linda Kane success, incorporating fun and This year was the first year of learning over a two hour running a camp for the under- session for the week. Well fives. There were on average done and thank you to three children that attended Junior Camp It was great to welcome back Fionnuala for all her hard each day. It ran for 45 minutes all our regular attenders and work. It was an ambitious each day. It was wonderful to to meet two new participants. undertaking but as always she have had three new families As with the baby camp, the pulled out all the stops and did take part and to see parents commitment and support from a phenomenal job. It was of and siblings taking part to parents was outstanding. such great benefit to all the support the young child with Many grandparents also WS children who took part WS. The activities included helped out to ensure the and Katie thoroughly enjoyed I felt I gained a nursery rhymes, action songs, children could join the camp every minute”. stories, music and language lot from the each day. The camp ran for development. Parents were Helena Begley two hours each day, from 11- chats, all we also given advice on the 1pm. Attendance was very spoke about purpose of the activities and stable each day. Activities how to best use them with and it really focused on talking about life Adult Camp their child. The feedback from during lockdown, social The adult camp was a hugely cheered me up parents was positive. distancing, sneezing/coughing successful session which was during this Following on from this camp, a etiquette, maths (the time), enjoyed very much by the document entitled Reach for difficult time for sharing news, language participants. It ran for one the Stars: Supporting the games and story time (with a week from Monday to Friday, everyone. Early Development of Your focus on topics such as from 3pm to 5pm. The Pre-school Child with Williams resilience and road safety). approach to the camp was Syndrome was developed. The children were also flexible to allow the Once feedback is received prepared for going back to participants to decide what from parents whose child school and what they were they wanted to do each day. attended the camp, it will be likely to expect. It became They chose to share their own made available for any parent evident that two hours was news, talk about living in or practitioner working with a ambitious and after the lockdown, their anxieties child with WS. Please contact second day a disco was about Corona virus, language Fionnuala Tynan for details. organised for the last half hour games, Maths games and a of the session from disco where each participant picked their favorite piece of WSI News Page 3 WSI Camps... July Provision/ Summer Provision Programme Continued Debbie Brannigan/Fionnuala Tynan music each day. The As many of you are now participants really valued the aware, all children with special opportunity to connect and felt educational needs were able this is something they would to access July Provision this like to do more often. summer. WSI put forward a proposal to the Minister for Education and Skills about Camper Feedback children with WS being “I really enjoyed seeing my automatically entitled to this William Syndrome friends because they have not been Deputy Paul McAuliffe again, I really enjoyed the able to access it before. The music, the games, the chatting July provision program was and Skills. They felt we had a - just being there really to see originally set up on foot of very strong case. The bottom everyone. It was great to see landmark court cases by line is that any child deemed Fionnuala again and it meant Kathy Sinnott (for her son with to have needs has been given The bottom line Autism) and the parents of access to July provision this a lot that she did this camp for is that any child the WS people because we Paul O’Donoghue (who had summer but this will not be the are all at home and we miss severe/profound general case next year or in following deemed to have each other. learning difficulties). Parents years. As members of WSI we needs has been of both individuals argued that need to continue to put given access to the educational system wasn’t political pressure on for this meeting the needs of their support. This does not mean July provision child and that having a your child HAS to avail of it. A this summer but program over the summer letter is available on the WSI this will not be would help their child’s website. It is written to the development. Interestingly, Minister. You can change this the case next the parameters have extended to the name of a public year or in to include Down syndrome. representative for your area. following years. From our perspective, this is But please also send it to the only because Down syndrome Minister. You can sign your I’d love to do it again, if it was has a large lobby group. If name to the end of it, it on again, I’d definitely do it. I Down syndrome is a condition currently has Fionnuala’s felt I connected with everyone that can automatically avail of name. We ask you to please even though I couldn’t see July Provision, then WS download it and send it to any them in person, just the should also be included. local public representatives in company, to see everyone your area, regardless of looking safe and well and We contacted a number of political party.