It is now almost a year since Tessa graduated from Henshaws College. We caught up with her mum, Kate, to find out how she's doing.
Tessa’s big move: 10 tips for parents whose disabled child is leaving home
The latest of our blog posts from Kate Simpson, mum to Tessa who graduated from Henshaws Specialist College in July 2016. Kate gives an honest account of her daughter's move to supported living and her top survival tips for other parents as their disabled child leaves home.
An update on Tessa’s big move
Tessa Pearl Simpson has been residing now for over a month in her new home. Her room is amazing, kitted out with home comforts, not too many to overcrowd and just enough that she can add to her collections along the way…good old Oxfam! She has duplicates of all her, cannot do without possessions, so her room at home remains intact and safe for her return visits.
Phase 1- otherwise known as “Blooming awful!”
We made a social story book, reminding her of how both brothers have grown up and gone to live in new bedrooms, in new houses, with new friends. The book explained that it was now Tessa’s turn and was filled with pictures of her new pad. It talked about all the happy Christmas and Birthday times we would still be sharing as a family, here at home! It also told of visits from Mum and Dad, adventures and shopping trips, chips, obviously, and lots of love and cuddles along the way.
Amazing as her book was, it received mixed reviews from Tess. Interest, excitement, anger, trepidation, sadness and resignation. One heart per parent, who is trying to prepare their child for this kind of change is simply not sufficient! It was horrible to think that she may see this as abandonment, or punishment or the end of our love. Lump (s) in throat swallowed, best foot placed forward and all ready for,
Phase 2- otherwise known as “Exciting and marginally less awful!”
Tess went to visit her new pad! The staff came to visit Tess at home, during various parts of her day and therefore routine. After all, meal times, bath times, medicine times, even playing on YouTube times are important things to learn about and to get a handle on! We had trips out with staff so they could see her in action in the big wide world, and the staff and Tess shared trips without us, which I hasten to add, all parties survived!
We set up Tessa’s room without her, so by the time she arrived the bed was looking great with fairy castles and the walls were adorned with Disney Princesses and photos from home. Not one thing had been taken from Tessa’s old life, yet everything was familiar in her new. We even bought a giant wooden swing for the garden to go with the Trampoline that another family had provided!
Phase 3 – otherwise known as “Pass the wine please!”
Moving in day was harder for us than for Tess, but we knew it would be! There have been ups and downs, a honeymoon period which ended in a few days of Tess packing up to come home but we all persevered. We visited regularly, supported the staff in their getting to know and understand our girl and introduced familiar activities from college like sweet packing. I experienced daily, what felt like mini heart attacks and sobbed a lot! Fortunately, I was surrounded by amazing and possibly less hormonally challenged family and friends, who kept me focused on the big picture.
Tess is enjoying fabulous relationships with staff and residents alike. She attends Textile and gardening clubs, eats from a whole new repertoire of foods and is blossoming like an Autumn Dahlia! She is very happy and still needs us, just enough! We are all looking forward to a big family Christmas and an exciting new year. We could not be prouder!
Kate’s 10 top tips for surviving the move to supported living
(1) Take as long as you need to find the right place. It is out there, and you will know it by heart!
(2) Stand up for yourselves. A carefully planned transition on your terms benefits everyone in the long run.
(3) Set the standards and rules which matter to your family and support the ones which the new place needs in order to make their system work.
(4) Trust that you will find a comfortable pattern surrounding visits and input. It will emerge organically.
(5) Keep believing that the bond you have created over the years will not evaporate just because they live elsewhere. They inherently know how loved they are!
(6) In dark moments, remind yourself that this is for them, and for the secure future that one day, by the laws of nature, will not include you.
(7) Prepare and allow yourself to experience a sense of grief. The moment will come when you realise that you are no longer the centre of their universe, so remember that this was always the plan! You are a natural satellite, very much in orbit and supporting their ever-expanding galaxy.
(8) Prepare and allow yourself to experience, guilt free, a sense of freedom. This is not freedom from them as people, just from the routines, sleeplessness and demands which happened to come along with them!
(9) Have fun, and a lie in, and a late Saturday lunch, in a pub, and treats, and heavy reading sessions and DVD marathons! It may take a while for your sleep patterns and sense of routine to adjust, but they will.
(10) Be very proud of yourself. You are making a good thing happen in all of your lives!
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