1. Try to look beyond the disability and get to know and love the child for who he or she is, just as you would with any other child in your circle. Every child needs supportive adults in their lives, and one who is carrying the extra burden of a disability needs you even more than most. Find the essence of the child instead of getting stuck reading the label. 
  1. Don’t offer help unless you really have the time and commitment to do so.
  1. If you feel able to offer help, be specific in the type of help you can offer. Sometimes parents are too exhausted themselves to be able to work out what help they need, or too proud to directly ask for what would really help. Can you try to put yourself in their shoes and work out what might really make a difference to them, and then suggest it? Also, be a little sensitive – don’t force unwanted help on the family either.
  1. If a parent is virtually housebound with a severely disabled child and you live close by, sending them a text every time you nip out to the shops to ask if they need anything can seem like a lifeline. I remember being in floods of tears simply because I’d run out of milk and couldn’t make a cup of tea all day.
  1. What about their other children? If you are taking your own children to the park would you feel comfortable in offering to take their other children along too? Often the siblings miss out on outings and fun.
  1. Are you any good at admin? One of the hardest parts of having a disabled child in the family is the sheer volume of phone-calls, paperwork and organisation that suddenly can start to dominate your life. There are endless forms, applications, letters to read and check for accuracy, letters to write, emails to send, everything to file, phone calls to make to book or change appointments or to order supplies – it just never stops, and then everything has to be recorded and filed. Many parents would love you forever if you offered to tame their admin mountains.
  1. Looking after a disabled child can be a full-on, huge round-the-clock commitment, with no time off, even to catch up on sleep after a series of bad nights with the child. How would you feel about learning how to care for the child too so that you could offer an occasional break? I know it’s a huge commitment but you might be offering a real lifeline if you could consider taking it on.
  1. The parents are likely to feel isolated and pushed to the side-lines of normal society in many ways by the attitudes and assumptions of others, and by the sometimes relentlessly onerous caring responsibilities. It’s not just the child who carries the label of being different, it’s the whole family. Do whatever it takes to keep in touch, to be there, to include them and invite them to things, even if they repeatedly can’t make it. The best way of helping might just be to help them feel normal, to be able to let their hair down and have a good laugh or a moan or a cry or whatever, with someone they trust who isn’t  going to judge them.
  1. What practical help can you offer? Housework? Gardening? Driving them to hospital appointments? Very few parents of disabled children would actually ever ask you to clean their bathroom or kitchen, but they would love you forever if you offered to and actually did it.

And Finally – Never offer unsolicited advice. Be particularly careful about never starting any sentences that begin with phrases like: “What you should do”, “You really must”, “Why don’t you do” “You ought to”, “If I were you, I’d be” ….. the list is endless. Unsolicited advice is unhelpful, extremely irritating and will only cause offence.

Please remember these two things.

Firstly, having a disabled child often inevitably brings an army of unwanted professionals to the door, all with their own opinions, advice, thoughts, assumptions, directives and instructions. The intrusiveness of it all can make parents feel undermined, overwhelmed and overloaded. They really don’t need more of the same from you. .

Secondly, the problems that occur in families of disabled children can be complex and seem overwhelming. By the time the parents share that problem with friends or family, chances are they will already have looked at it from every possible angle, with countless sleepless nights lying awake exploring every single way round it that they can think of. Whatever suggestion you think of first will almost certainly been considered already and discarded as unworkable for very good reasons. If parents need advice, I’m sure they will ask for it, but unless they do, it’s probably best not to offer an opinion. 

PS. If you go ahead anyway and offer advice, please do so very gently, with huge amounts of tact, diplomacy and sensitivity. Don’t be offended if it’s turned down and don’t push the advice or ask why they won’t take it.

By Yvonne Newbold

6th June 2014

 

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10 Practical Ways to support Parents of Disabled Children
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