Here's a selection of our top survival tips for maintaining your sanity and getting what you think is best for your child.
Some of them relate to dealing with professionals, others are more personal, perhaps relating to the stability of the family or your own well-being. Amaze produces a useful factsheet: ‘Managing meetings and paperwork [pdf 670kb]‘, available here for you to download.
Write it down!
- Get a notebook or diary, you wouldn’t believe how much information you start to collect
- Note the date of any telephone calls you make and any letters you receive, and keep copies of anything you send
- Take notes of every conversation – if you can quote details of a previous conversation it can refresh a befuddled memory
- Make use of email if you can
- Start a file where you keep copies of all the letters and reports you get about your child
On the phone:
- Make sure you’re talking to the right person, or persist until you get hold of them; don’t be put off by someone being hard to get, note down when they’ll be back and call them on time
- Try to be patient, no-one else is as emotionally involved as you are, but be prepared to be firm if necessary
- Always be friendly to receptionists and secretaries and let them know how much you appreciate their help
- Get to know who’s who in the place you’re calling and go to the top if you need to
- Try to be specific, sort out your thoughts before you ring
- Take someone with you for support, and get them to take notes
- Ask the professional if you can have copies of any notes taken
- Don’t be afraid to ask questions, especially if you don’t understand what has been said. If you’re still confused, ask again
- If English is not your first language, ask for an interpreter
- Be prepared for clinics running late and take activities to occupy your child or ask if your child can be seen before others who are more able to wait
- Choose who is present and say no if onlookers might make you or your child feel uncomfortable
- Have faith in your own experience of your child, you know your child better than anyone elseWhen you’re presenting your case, like at social services, sometimes you can just get so upset, because you’re going through all the worst things, aren’t you? Trying to explain to somebody what it’s like, it can be really upsetting…
- Follow up appointments with questions in writing or by email if you think of them later on
- Ask when you can expect replies to requests – make a note in your diary and follow it up if you haven’t heard by then
- Make sure you meet deadlines, it’s in your interests to think ahead
- Make sure professionals know if you’re unclear or unhappy about anything, a brief word or telephone call may be all that is needed to sort things out
- Let people know in writing if things start to go badly wrong; don’t wait until you’re at crisis point
- Don’t feel bad about changing specialists if you don’t get on or feel their approach is wrong for you or your child.
- Remember that not every minute of your child’s time has to be filled with something educational/useful, do things you both enjoy without feeling guilty
- Get any information on your child’s condition that you can; national organisations can give support, advice, and perhaps information on the latest research into your child’s condition
- Ask your support group to help. Remember, they’ve heard it, seen it, and been there. They may be able to go to meetings or reviews with you, or write letters of support for you. Use them.
- Explore financial help, don’t feel embarrassed about asking for it, and not all benefits are means tested
- Ask other parents about their experiences, they will often be your best source of information
- Teach your child to be as independent as possible, it will make your life easier in the long run
- Try to do things as a family – it’s easy to concentrate too much on your ‘special’ child and get the balance wrong
- In the early days or during a crisis, appoint someone outside the immediate family to be the contact person for news; someone else can pass on messages or let people know when they can visit
- Don’t be afraid to take the phone off the hook, and enjoy what peace and quiet you can
- Don’t be ashamed to say ‘I can’t do this any more’, ask for help when you need it
- Find someone who’ll listen and take you seriously, not necessarily a qualified person, just someone you get on with and trust
- Be selfish – if you go under everyone will suffer. Put yourself first for once.
- Find ways of pampering yourself – maybe have a massage or some reflexology. It needn’t be expensive – some organisations provide special cheap (or sometimes free) treatments for carers. Read about complimentary therapies on our therapies page and find out more about the Carer’s Card which offers discounts for carers on lots of leisure, health and wellbeing activities across the city. You might also want to check with the Carers Centre to see what’s on offer at the moment.
- Be prepared to deal with well-meaning but insensitive comments sometimes, even from family and close friends. In time, you’ll find you get better at hearing what people mean to say.
- Make sure any groups you join are supportive, if you come home feeling worse it’s not worth it
- Have an interest outside the family, like work/sport/a hobby, having somewhere to go where you’re treated the same as anyone else puts things back into perspective