In this first instalment of our new series, Sally and Jim Irvine share this family update about sons Jamie (40) and Stephen (35)
Lynne Zwink, founding member, says, 'Sally and Jim Irvine were among the first families to join the Society following the inaugural meeting in 1989. Jim became a Trustee at our first Annual General Meeting in May 1990 and took on the role of Newsletter Editor which he held for 4 years producing eight editions. Sally was one of the Society’s first Link Members, who offered a local point of contact to family members. Our “Links” were only a phone call away – offering a listening ear and support to family members. They were all parents, who knew well the difficulties and anxieties of living with Fragile X and were willing to share their experiences with other families.'
Sally tells us, 'Life was so much easier when they were at school! Since leaving and moving into Adult Services life suddenly became much more complicated.....!!
Both our sons, Jamie (on the right in this photo) and Stephen (left), have Fragile X Syndrome and attended a local Special School. They left at age 19 (Jamie 4 years before Stephen). Transition from school to further education was a scary time for us and the boys, especially Stephen. We took the option of Residential College to give them independence away from home and we felt the local colleges, at that time, were not able to meet their needs.
Whilst living in Loughborough, Jamie attended various day services and enjoyed the activities & college courses on offer – ranging from farm work to gardening to sport & leisure and life skills.
Anyone who knows Jamie will know he has always had an interest in politics & current affairs (he once asked if he could apply for the job of Speaker in the House of Commons when it was vacant!!).He likes to follow the national & international news and keeps up with the football results, especially Manchester United.
This interest in the world & his enthusiasm for talking enabled him to become a Volunteer with a local Age Concern group, helping to hand out the teas & coffees and generally chatting with the clients at a Housebound club. He was very popular and became a valued member of the team for over 5 years.
The next 4 years at William Morris House College in Gloucestershire saw Stephen grow in confidence and self-esteem and their holistic approach to learning really suited him. He learned woodworking skills and pottery and enjoyed assisting with jobs around the house & grounds. Stephen also discovered a talent for drama, and we’ll never forget our amazement in seeing him steal the limelight in productions of “Much ado about Nothing” as a comedy policeman & “Grease” as part of the band – complete with electric guitar! Where had our shy little boy gone!!! It was brilliant!
We had hoped for Stephen to continue with the Camphill way of life but unfortunately, at that time, the Local Authority was starting to make major cutbacks and withdrew all its out of county funding making it necessary for Stephen to return home. We tried to fight the Local Authority’s decision but were unsuccessful. The next 12 months were very difficult with Stephen at home. He became more & more frustrated that he had lost his ‘independence’ and was having to ‘tag’ along with his 3 much younger sisters.
The Social Services tried to offer Stephen various living options, all of which were unsuitable, and we were again having to fight his corner to find something better. Eventually, they came up with a residential placement in a Care community the other side of the County which seemed to fit Stephen’s needs. At first all was well and Stephen settled. He liked living with the group and was happy for us to visit.
After a couple years & a change of house within the grounds, we were told the Care Village was closing down and the residents being re-housed! We were ‘encouraged’ to allow Stephen to move in with another resident in a supported living house while the closure took place. We had reservations but felt we had to give it a try. It was not a good move. Unfortunately, Stephen didn’t get on well with the other resident and became withdrawn and uncooperative. The care staff were changing weekly due to the closure and continuity was non-existent. We felt the only option was to look for yet another placement preferably in a residential setting nearer to our side of the county.
So, once again, we were in negotiations with Social Services regarding suitable options which were few & far between! However, a lifeline was thrown to us when the home Jamie was happily living in said there was a room available and offered it to Stephen. Happy Days!!Within three weeks, Stephen had moved into Jamie’s Residential home in Loughborough, lost most of the extra weight he had gained and relaxed into a happy contented person again.
Jamie and Stephen
The closure of the boys' Residential home this year came as a shock. They had managed to keep everyone safe and well throughout the recent Covid Lockdowns, following all the restrictions and guidelines recommended for Care Homes including restricting family visits and contact. A really difficult time for all of us, but we got through it! Unfortunately, the private owner was unable to sustain costs etc and made the difficult decision to sell-up.
They gave everyone, including Social Services, 6 months’ notice of closure instead of the Statutory two months’ notice but still placements were not found until the last two weeks of closing! We had expressed a wish that Jamie & Stephen stay together, they were happy with this, but finding two vacancies together proved very difficult especially with the time restraints. Eventually, with much ‘negotiation!’ on our part with the Social Services, it was decided to look for separate placements for the boys. They enjoyed living together but didn’t necessarily need to.
Jamie had always had ideas that he would like his own flat and though he hasn’t the level of independence & understanding to be able to cope on his own, we did manage to find him a ‘room with own bathroom’ in a Supported Living group home. He has his own Tenancy & door key to his room but for our part there is 24 hour staff cover for all the residents and 1-1 time for individuals. Jamie likes to call his room his ‘Flat’, so that’s how it’s referred to! He is also able to still access previous day services from his new home, which is a bonus.
Stephen, on the other hand, has moved into another Residential home in the County along with 2 other residents from his previous home. It’s a beautiful old property with large rooms and grounds and Stephen has a lovely room overlooking the garden. Considering there was no actual transition for him, given the last-minute timing of his move, Stephen has settled in extremely well! They are a very friendly pro-active home, out & about everyday around the local village, offering art and craft, gardening and cooking activities and promoting a ‘family’ environment for all the residents. It reminds us a lot of William Morris House in Gloucestershire where Stephen first lived.
Both of their homes are about 15 mins away from us, so keeping in contact is not a problem.
as for the rest of the family...
Our four daughters are all adult now and making their own lives. They are very close and supportive of their brothers and will one day take up the reins from us! We’ve always encouraged them to make their own decisions regarding testing re carrier status and kept them informed of updates regarding Fragile X.
Three of our daughters have families of their own and we are now proud grandparents of two lovely granddaughters, with another on the way, and a grandson. Jamie and Stephen are doting uncles and very much part of their nephew and nieces' lives.
Our youngest daughter has Downs Syndrome (not a FX carrier) and has her own challenges. She is still living at home and accessing a local day service which promotes independence and work skills including baking and setting up a café. In the next five years, we will be looking and encouraging her to move out of the family home and into her own home. Whether that is Supported Living or Residential? Watch this space!!!'
We hope you’ve enjoyed reading our family update.
Love & best wishes,
Sally & Jim Irvine