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Parents of people with learning disabilities face daily struggles with the things we all take for granted.
In my career I have known many, many families who support children and adults at home with profound learning and physical disabilities. They were from every socio-economic group, ethnic group and religious background. Some had several children, some just the one. Some were organised and some chaotic.
A relentless fight
The common thread for all of the families I have worked with has been a relentless need to fight for help. From the moment the child was diagnosed as having additional needs, nothing that helped make their lives comfortable came without a battle. From medicines to wheelchairs, from adaptations to the home to short respite breaks, families learned quickly how to agitate, hassle, campaign and shout.
Yesterday I was in a hospital children’s ward meeting a recently referred young person and his amazing mother. She has significant health problems and is in constant pain, yet as soon as she arrived the nursing staff vanished into the air and her son’s considerable needs were left to her to meet. These included full personal care, assisting him to eat and drink and manoeuvring the furniture around his room to help him find space to play.
She explained to me that her biggest fear was that when she was not around, nobody was there for her son and he was left alone and afraid. When she asked about this, she was told that if this was a concern she should be with him all of the time. Except that this mother has three other, younger children, all of them need her around. Her husband works long hours to afford to support the family and enable her to remain at home with the kids. She used to have a good career, but realised that her eldest son would never be independent enough to allow her to return to work as many women can.
Another mother I met was angry and spoke with vitriol about the lack of help she had with her now adult daughter. At this point, when I was involved with the family, the daughter was being assessed for adult care and mum was adamant that this should be away from home on a permanent basis. The family social worker was trying hard to help the daughter remain at home with mum, offering six hours a week of support from a carer.
Mum was described as ‘difficult’ and it was hinted that she was wishing to ‘abandon’ her daughter. She was judged as selfish and unfeeling. But when we met and she spent three hours yelling at me, she yelled about a life of 26 years of scrapping with the authorities for everything from benefits to continence aids. She spoke of her absent husband, her lost friends, her parents that never coped with the daughter’s disability. She spoke of carrying a 15-year-old up the stairs to bed until she had to fake a spinal injury (recommended by her GP) to get a downstairs bedroom.
A break is not unreasonable
I wish these two were isolated cases, but every family I have met has been through these challenges and has from time to time been judged unfairly by professionals. It’s not unreasonable to want the right equipment to support a profoundly disabled child, and to want that equipment to be updated when it is outgrown. It’s not unreasonable to want help getting your child up and dressed when you have been doing it alone for thirty years. It’s not unreasonable to want a break, a holiday and time with your other kids, evenings out with your spouse, peace and quiet or unbroken sleep for one night a week.
We who support people with disabilities find some shifts can really challenge our patience, wreck us physically and cause us to question why we do this work at all. For parents, there is no option. It’s a lifetime commitment, every day is a fight and there’s no annual leave, pay or camaraderie.
In Learning Disabilities Week, lets all consider the families who keep care in the community a reality for thousands of people. We only support a few; they are the silent supporters of the rest. When they shout, lets not judge, but listen and act.
Ginny Tyler – QCS Learning Disability Expert Contributor