One of ours came 35 years ago when my daughters were born.
Helen was first born and has Downs Syndrome, but our first concerns were for her sister due to the delay in her birth. We were given the choice of leaving Helen at the hospital. We brought both our babies’ home, and we couldn’t have imagined a life without them…
It was difficult to get the girls into the same school together; we managed until they were 11. After this point, we found a good school for Helen, but when she reached 16, the school closed. Again, we had to make important choices, and she attended the Catcote Post 16, moving on to Catcote Futures, where she still attends today. It is not a Day Centre but provides provisions for Life-Long Learners to gain life skills and confidence for their future.
Helen had never accessed local authority respite, and 12 years ago, I started to manage her Direct Payments and employ her staff. Over the years, we have had some excellent Personal Assistants, teachers and social workers to help us through the rough times.
Finding the right care support
Time passes by so quickly; Colin and I are now in our 70s and aware we needed to make future choices for Helen. We knew what we didn’t want:
Her own mortgage – too expensive, upkeep of the property. We would need to continue managing Personal Assistants and the future stress of this for her siblings. Private Landlord – again manage PAs and consequences of change if the tenancy ended. Large places of care with many residents, where abuse would be hidden. Care Agencies – small room, fast turnover of staff and their clients/service users are brought back from social events early for staff convenience.
We wanted a place near to her home where we would be welcomed and for Helen to be able to return home at weekends. A spacious bedroom with own bathroom and shared with 1 or 2 other people. Support to be more of a friendship and to be flexible when invited to events lasting until 11 pm.
Oak Lodge care support excelled our expectations
Oak Lodge at Whitethorn Gardens was the third place we visited; it excelled our expectations. The accommodation was newly furnished and spacious with Elan Care’s office in the same cul-de-sac. The Whitethorn Garden community consists of bungalows and flats where people can socialise in the gardens together and visit each other’s homes.
On 12th May 2018, we informed Helen’s social worker on our positive feeling towards Oak Lodge, and it was where we wanted Helen to live. There was plenty of paperwork, meetings, visits to Helens learning place, changing the care plan, PAs leaving and of course meeting the two girls she would be living with.
Everyone involved was aware that we needed to move slowly, and this had to succeed; we were getting older, and we knew Helen would fight against leaving home.
On 8th August 2018, Helen, her PA Claire and I met the two girls and their social workers and support assistant at the Catcote Vestry; a place Helen frequently visited and knew the staff. The meeting did not go well; Helen did not acknowledge the girls.
Moving in to Oak Lodge at Whitethorn Gardens
From 14th September, we started taking small steps, meeting the girls at Oak Lodge for coffee, seeing her room, putting some clothes in her wardrobe, spending a day with the girls and sleeping there one night per week. We were pulled inside out but knew we had to persevere. Helen continued to fight us, but we were aware she was happy at Oak Lodge when we were not there.
Helen has autistic routines, food intolerance and her speech is difficult to understand, but she is a fast finger speller and a good writer of peoples’ names. Her routine has continued, lunch at noon, dinner at 4 pm, a half sandwich at 7 pm and bedtime 10.45pm.
Helen has settled in well, and she is a 15minute walk away. I see her regularly and have a coffee with the girls. They wanted to prepare a dinner for Michelle, the manager and another resident and I helped with Helen’s Coeliac diet.
All the girls like crafty things, music, tv soaps and love island and have their opinion of programmes, and in general, get on well. They are all still learning that Oak Lodge is their home and that they have choices around their independence.
Helen engages in conversations on many topics
Helen is the joker of the bungalow, and she has a good memory, especially if staff make silly mistakes, but also informs them of our silly mistakes too. She has started to personalise the staffs’ names, and she joins in with their banter. Her confidence has developed around other people; Helen now engages in conversations on many different topics.
As expected, we have had some problems along the way, sometimes just small misunderstandings, but they are resolved quickly by the staff and the manager.
Our attitude has changed too. Helen will always be our daughter, and we are proud parents supporting her with this journey to greater independence and excited to see Helen making her own choices. It has been one of the biggest decisions of our lives. And we have made it because we have sadly lost friends who never had the opportunity to make these choices. We can watch Helen develop with the girls and staff who are all her age, and we are here for her as parents always, like we are for all our children.
The choice for Helen to be independent was for all our children also, they are married and have families of their own. Helen is their sister, and they love her, and together we have family outings, celebrations and holidays; but they are not her carers.
We believe Elan Care for a young company entering Supported Living for the first time with the excellent training, kind staff who work around the girls has been the right choice.
Life is a guessing game with choices. At the end of the day, we hope we have made the right choices for our daughter Helen.
Thank you to everyone involved in our journey.
Beryl and Colin, Helen’s parents.