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. Ask family and Fionnuala is so much fun - I TDs about this and got it friends to do the same please. felt I gained a lot from the brought up as a parliamentary It appears the bigger the lobby chats, all we spoke about and question by Deputy Paul group, the louder we sound it really cheered me up during McAuliffe. It was also raised and the clearer we are heard. this difficult time for everyone”. by the INTO (Irish National Teachers’ Organisation) with Debbie Brannigan and Rebecca Conroy the Department of Education Fionnuala Tynan I have put together an Home Schooling a Child with WS information Fionnuala Tynan booklet on - Many of you have had the issues (which may or may not on how to do this and gives a home schooling experience of teaching your be associated with WS), you range of ideas and resources your child with child while the schools were may end up doing more of this for developing your child’s WS. It gives ten closed. No one is fully sure in the future. I have put to- skills across different curricu- top tips on how what will happen next term gether an information booklet lum areas. The booklet is and for those of you with chil- on home-schooling your child available on the WSI to do this dren with underlying health with WS. It gives ten top tips webpage. WSI News Page 4

Desmond Guinness - An Appreciation Ann Breen I was very sorry to hear that the Patron of our association, the Honorable Desmond Guinness, passed away recently. He was a really nice, generous man who lent his name to our organisation at the very early stages of its development. I believe his association with the Williams Syndrome Association of Ireland from its infancy has lent us an Over the years air of legitimacy and we were always gravitas over the years. delighted to My daughter, Karen, was welcome diagnosed with Williams Desmond Syndrome in February 1986. After a number of Guinness to months, having come The Honorable Desmond Guiness with Nuala Keady and Ann many of our to terms with the attending WSI’s 20th Anniversary Celebration in 2007 events and diagnosis, I made contact with another parent of celebrations special needs teachers and with all the work of the a WS child. This WS family including the health care workers as well as association. He has not been was the Giles family from Cait Giles and myself. with us in recent years as his 20th and 25th in county . In Desmond Guinness asked health has been in decline for anniversary 1987, as other families started many questions and listened some time. to make contact with us, Cait to all we had to say about WS. Giles and I decided that we At the end of the meeting he Our sincere sympathies go to should form a parent support agreed to act as Patron of our Desmond’s wife, Penny, his group. We also began to look Association. Needless to say, daughter Marina, his son for someone to act as patron we were very grateful to him Patrick and all the extended

of our group. As the Giles for his decision. We believed . family lived in Leixlip, they that having his name May Desmond Rest in Peace. knew of Desmond Guinness associated with our very small who lived in Leixlip Castle. organisation would be of great Cait suggested that we benefit to us. I developed Ann Breen approach him for his support. letter headed paper showing Honorary President She contacted him and he him as Patron and I believe it Williams Syndrome Ireland expressed interest in helping helped us in our efforts to us with our organisation. spread awareness of WS and However, he wanted to hear to raise funds to help us with about Williams Syndrome our work. from the medical, teaching and caring professions, as Over the years we were well as parents, before he always delighted to welcome committed himself. Therefore, Desmond Guinness to many a meeting was organised with of our events and celebrations people who had worked with including the 20th and 25th our WS children. This meeting anniversary celebrations. He was held in Leixlip Castle and was always very happy to be was attended by a with us. Over the years I also cardiologist, a pediatrician, kept him updated, via letters, WSI News Page 5

WS Awareness Month Linda Kane For this year's Williams Syndrome Awareness Month we encouraged our members to get involved and tell their story on Facebook! We had a new post each day for the month of May to highlight. We offered easy to understand explanations surrounding the condition. A lot of families found this helpful to share with families and friends. 18 different families offered a glimpse of their lives as they shared their likes and dislikes. We wanted to make sure our members know that even though we cannot meet up like normal we are still interested in each and every one of them. Our engagement on our Facebook page was phenomenal. On one post we reached 24.2K people. We encouraged some families who have never been active before to take a real interest in the association.

My goodness we will have a great time when we all meet up again!

In the meantime for anyone who is not on Facebook here is a few snaps of some of our newest members that posted their stories. Apologies it is not possible to include everyone in this short article.

Linda Kane

. We encouraged some families who have never been active before to take a real interest in the association WSI News Page 6

My New Adventure Special Arrangements for the Ashleigh O’Hagan WSI 2020 AGM

I have recently changed training centers and I cannot In view of the Covid 19 advance of the November wait to tell you all about it! emergency it will be meeting and these will be I had been with the Daughters necessary to hold our annual discussed and considered at of Charity since I was 8 and I general meeting via video the meeting. conference using the Zoom made some amazing friends Members will also have the AP. All members will be and grew up with them all, but opportunity to put their names notified well in advance by in the last year or more I felt forward for the Committee for as though I wanted to see post and email of the 2021. Any proposals received what else was out there so my arrangements for the AGM. will be considered as part of mom went on the hunt for a The email invitation will much more. They also have the election of the 2021 new service for me and did contain a link to the AGM discos regularly and anyone Committee during the online she deliver! meeting online. The meeting who knows me will know how meeting. notification will provide I am now in a full-time day much I enjoy a good dance!! detailed instructions on how to The key dates for the on-line service in Killaloe which I I’m really content and use Zoom to access the AGM. absolutely love! AGM are: stimulated in my new service In addition the Committee will October 15th: Invitation to No two days are the same, and I’m so looking forward to issue the Chairman’s Annual online AGM including: Agenda with something new or finding out what the rest of the Report and the Annual for Meeting, Minutes of the different available to me each term has in store! Financial statement for 2020 day. I have settled in so well 2019 AGM, Annual Reports The person responsible for to all members. Members and have made more great and Instructions for using these services in the HSE is who are not in a position to friends and the staff have Zoom called the Occupational use Zoom or would prefer not been so supportive and Guidance Advisor. This is the to attend the online AGM will Saturday November 14th: helpful to me since my very have sufficient time to submit Online AGM at 12pm to 1pm . key contact you need to make first day. queries regarding the reports if you need your training We spend our days involved services improved in your or to raise other issues in in art work, outings, shopping area. trips, lunch dates, baking, Ashleigh education, life skills and so

Williams Syndrome Ireland The Williams Syndrome Ireland ( WSI ) was founded in Williams Syndrome Ireland 1987. Its mission is to promote the general welfare of Carmichael House individuals with Williams Syndrome, to provide practical help North Brunswick Street 7 and support to them and their families and to enable them to reach their full potential through their strengths and interests Phone: Phone: 087 2398055 E-mail: [email protected] WSI provides support and advice on Williams Syndrome to individuals and families affected by WS. We enable individuals, families and professionals to make contact We’re on the web! with other people affected by WS and who have already experienced the many williamssyndrome.ie challenges posed by WS. Annually WSI organizes a range of events for our facebook.com/ members and they can use these events to tap into the knowledge and experience williamssyndromeireland/ for every stage of a person’s development

Together we can make a massive difference!