Disclaimer: Although I make references to 'our daughter' I am her step mother and have been since I met her Father in 1999. I consider her and her brother, referred to children 1 & 2 of 5, as my family. In the same way my husband considers children 3, 4 & 5 as part of his. The children refer to us as their parents and their siblings as just that. The children were 1, 5, 7, 10 & 11 years of age when we blended our 2 families.
In February 2016 I wrote a blog post about our adult daughter being in care and the self imposed guilt we feel about living thousands of miles away, you can read the post here. It was featured on Mumsnet Blog of the day and there were some lovely comments from people in similar situations on both the blog post and Mumsnet forums. In October Mumsnet contacted me to write a follow on piece for their forum, but due to disability and special needs being fiercely debateD in several forums after the BBC documentary featuring Sally Phillips, it was shelved and I forgot all about it.
I decided to post the piece I wrote for Mumsnet after receiving an email in February a year on from the original post about implementing a new assessment for our daughter, an assessment we were not asked to take part in by her care home and there are many errors in the assessment that are relevant to the original post that need addressing. Most of the content isn't relevant to our daughters day to day care, it's the historical information that is incorrect, such as her father only visiting once a year, us moving to Dubai after she went into care and no mention of the fact that from 2000 -2011 the year she went into care and the year we left the UK, that she stayed at the family home with us and her siblings almost every weekend.
It is important to us that this is corrected. It happens every time there are new management, social workers, owners of her care home and we sent similar emails and correspondence in 2013 and 2014 when this happened last. Surely her personal information should remain the same, just with an update on the previous year.
For the past 16 years, our daughter has been in care. She is now 28.
She lives with another disabled young woman and requires 24/7 care - the same kind you need to give a baby or toddler.
She is profoundly disabled and wears nappies. She can feed herself with a spoon if the food is chopped up, and can drink unaided out of a sippy cup. She has no form of communication and doesn't make eye contact, so if she is unwell, uncomfortable or in pain, we must use a process of elimination to work out what is wrong. She may laugh hysterically, cry or stay quiet. There is no pattern to her behavior.
My husband and I now live in Dubai. Putting a child into care was hard; moving thousands of miles away was even harder. People sometimes suggest that by moving abroad we no longer care about her, but that isn’t the case at all.
Our daughter has no concept that we are so far away. Her life carries on without a second thought for us - she doesn’t realise that she only actually sees us for a few weeks every year. She recognises us only by our routines with her when we visit. Our photos are on her wall, but we don't believe she knows what she is looking at.
Prior to leaving the UK in 2011, we had her home every weekend and went to see her once a week. We felt welcomed visiting her and our other children would play with her in the garden as if they were in their own home.
However, we had to manage these visits carefully - seeing other friends and family with her was difficult, as she has a tendency to grab hair and clothes and has no awareness of personal space or danger. She’s active and needs space to roam about, but she walks unsteadily and falls easily.
Since moving abroad, we try to keep in contact by sending post and emails, but we rarely receive a reply from the people caring for her. There is a constant turnover of staff, and there is little time for them to be briefed on her history and family background. Although we can’t fault the care she receives, we often feel our concerns and efforts are dismissed - it seems her carers assume we have abandoned her.
This can be difficult to cope with. When I last called to wish our daughter a happy birthday, the person who answered had no interest in talking to me, although I tried to find out details about how she was. I used to work in care and I know the kind of assumptions that are made about families who don’t visit regularly; it’s difficult knowing that these are being made about you, and being powerless to stop it. We feel guilty about the situation, but we also know it’s best for our family.
We’ve had to make these kinds of difficult choices throughout our daughter’s life. We also have four sons, and when they were younger we made the decision to go on holiday without her. Family days out always took an enormous amount of organisation; the boys were often restricted by their sister’s needs. In the end, we decided that their need for individual time and attention outweighed the guilt we felt at leaving our daughter behind.
After 16 years of navigating the care system, we no longer have the desire or energy to constantly justify our relationship with our daughter. We also know that as time passes and we age, we will be able to do less for her: we’re already finding it harder to get her in and out of the car and change her nappy. We have a lovely time taking her out and spending time with her when we visit, but we wouldn’t be able to cope with her day-to-day care. While we’ll always feel guilty that we’re not with her on a daily basis, we’ll always feel relief when we drop her back at her home at the end of our visit.
We need our daughters record to be accurate and reflect our relationship with her and her extended family. There have already been occasions where I've turned up to visit and I've had to justify my relationship with her as the staff haven't met me before and aren't aware of her relationship with me.