H: A to Z of Family Rights and Lives
Today, we continue our A to Z of Family Rights and Lives. The letter of the day is H – H is for haggard, H is for help, H is for horror stories and many more. A big thanks to Sharon Smith, Liz Wilson, Sharon Hulme, Helen Seth, Susan Kellett, Jenny Carter, Kerry Fox and Jacqui Byland for their contributions (and a very amusing evening in our Facebook group).
H is for…
Haggard: Sadly, we all have days like this. The days when you look in the mirror and think “how did this happen?”! We are so busy being a carer that we forget to care for ourselves; or to be honest, we just don’t have time or inclination. If the LA decides you are fortunate enough to be given an hour or two away from your caring role, the last thing you want to do in those few hours is have a facial or paint your nails. Haggard becomes quite normal, as does outrage when a practitioner sits in front of you, perfectly groomed and with the luxury of having sleep) and says “I understand how you feel.”
Happiness: Should this really be such a difficult goal to achieve – the state of being happy? However, when happy is defined as “delighted, pleased or glad”; “indicative of pleasure, contentment or joy”; or “favoured by fortune”, you begin to realise that, with the current system being generally unfit for purpose, happiness is a goal that will present many challenges.
Hats Off, Hurray & High fives – to all those parents, teachers, TAs, health professionals, friends, supporters, basically everyone who helps, supports and enables our children, young people and adults to have a life rather than to merely exist; to do, to be and to achieve.
Health Services & Cuts: Health services that have waiting lists, health services needed but not funded, health services that are only available in London. Health services funded by CCG, health services funded by Trusts, health services from where? For many of us it is hard to get our heads around the maze of the health services and who funds what, how our children can get referred and why don’t health and social care speak to each other? Our health services are under threat – there are already long waiting lists and too much pressure on the NHS. We are fearful that many services will be cut including mental health services – putting more people at risk and another blow to families with disabled children.
Heart Strings: These get pulled, ripped, tugged and torn. We are on an emotional roller coaster.
Hello, Hey and Hi: Sometimes, this life can seem so lonely and brings so many negative emotions. Remember to reach out to a fellow parent and say Hi. Knowing someone is thinking of you can make all the difference to your day. It is great to develop relationships via social media but there is nothing better than meeting face to face and forming real friendships with people you don’t have to explain anything to – those who get it and understand.
Help: Something we all need, something we often feel to proud to ask for, something we often don’t know where to find. Without help we struggle on, only just coping and managing. When we get the help we need it improves our lives and gives us strength and resilience to carry on.
Hills (to climb): With every new step in the system, there is a hill to climb. Need funding for nursery, climb a hill; need a statement (or EHC Plan), climb a hill; need a speech therapist, climb a hill; need a break, climb a hill; need CAMHS, climb a hill; the list goes on and on. When Emily Perl Kingsley wrote “Welcome to Holland” in 1987, the analogy helped many families but Holland is also famous for being flat. Maybe it should have been “Welcome to the Alps”
Holiday: Only one in 5 disabled people and their families take a holiday. They have become a thing of the past. Your child can’t deal with change, your child needs 24 hour care and taking all of this to a new place would mean a breakdown for you or your child prefers to stay home with a care. With the introduction of no holidays in term time, families who previously had holidays no longer can. Either they can’t afford the cost, or more commonly, their child cannot cope with the increased number of holiday makers in peak time so holidays become something other families do. So a big thanks to Mr Gove for this little gem, what a total lack of understanding of the lives of children with SEN and Disability this shows. Research shows that the benefits of a holiday include: time together helps families bond; new experiences and opportunities gives kids time to learn; children are less likely to develop behavioural problems in a relaxed environment; parents have fun too; and kids can keep fit and healthy.
Hope: Don’t give up all hope. We often do, we often think that hope is pointless. If we give up hope though, we lose.
Horror stories and Horrendous: Too many of these exist. Too many stories that as you read them you think “no, this cannot be true, this has to be exaggerated” and then the more you read, the more you realise that this is happening. Winterbourne View, Justice for LB, families with their young people being forced into homes hundreds of miles away or young adults being turned away from a bowling club because they made the members feel uncomfortable. Do the people responsible for these horror stories hang their heads in shame, as they absolutely should? Not a bl**dy chance!
Hospital stays: Oh the joy of having a child staying in a hospital. Keeping them entertained, keeping them safe, engaging with the medical staff who often know less than you about the condition, explaining to staff that their questions need to be short, clear and precise – again and again. If anyone has any top tips on hospital stays, let us know so we can share them with others.
Humiliation: To humiliate someone is to “make someone feel ashamed and foolish by injuring their dignity and pride.” How often have you been humiliated? Even more distressing, how often has your child, young person or adult been humiliated? How did you deal with that?
Hugs: Mind Body Green write a great article – 10 reasons why we need at least 8 hugs a day. Now, personally 8 hugs a day would make me queasy but many people like hugs, so ask if someone needs a hug today!
Hunt: Hunting for information and support. Or being hunted by those who need you to attend a meeting with them, so they can tick a box. A meeting that involves you incurring costs for travel, childcare or carer; a meeting that you know is just a tick box, so you start to avoid calls, letters, etc. Being hunted is never fun; then again neither is having to hunt for the meeting you actually do need.
Thanks to Sharon Smith, Liz Wilson, Sharon Hulme, Helen Seth, Susan Kellett, Jenny Carter, Kerry Fox, Jacqui Byland,
Debs is one of the co-founders and Directors of Bringing Us Together. She is mum to three child with a variety of SEND and has a great husband.