When a child needs a lot of extra help to learn it can be hard to resist the urge to say 'yes' to every opportunity that comes along, but action packed days can be exhausting and stressful for everyone. It's OK to let things go; not every minute of your child's day needs to be filled with something educational or therapeutic. Children need time and space just to be themselves and to daydream.
- It's easy to feel isolated if your child's needs make it hard to 'fit in' to ordinary family activities. Other parents who have children with similar conditions to yours can be easier to be with and a good source of ideas about safe places to go and fun things to do.
- Try to do some things as a family; it's easy to concentrate too much on your disabled child and get the balance wrong.
- Keep an open mind to all opportunities; sometimes children and young people want to be like their non-disabled peers and distance themselves as much as they can from their differences or disabilities, at other times the same children may only feel confident alongside disabled peers.
- Remember that children and young people just want to make friends and have fun. It's too easy to get hooked up on rules and protocols, structure and learning outcomes even though these can be important.
- Don't dismiss a club because parents are required to stay. Some of the best activities are organised by other parents and volunteers who can't take responsibility for supervising children who need the toilet/want to sit out for a bit. Sometimes you have to balance the value of a free or inexpensive opportunity for your child against the chance to have a break yourself. Anyway, these are often the places to meet other parents and exchange advice and support.
- Talk to the staff about how your child can be helped to feel comfortable. Joining a new club is scary, especially for children who look different, or who have difficulty making themselves understood or making sense of new situations. It is a good idea to have at hand five helpful things you and your child want everyone to know about.
- Encourage your child to think about what's important to them - often things that might seem insignificant to us, make a big difference to them. You can write your list together. You may also want to write down other more personal or medical information that's shared only on a 'need to know' basis.
- Your child might want to think about how they would like to be introduced and whether they'd like to do this themselves.
- Young people can find it helpful to go along with a companion to help them join in. Ask your local youth service or voluntary organisation (such as Mencap) if there's a local volunteer 'buddy' scheme.
- Once they have joined, ask your child how things are going and listen on all channels. If your child seems lost for words, they may tell you through their behaviour or gestures what they think.
- You will want to feel confident that your child will be welcomed and well supported and you may have lots of questions. What will happen if my child is upset or has a tantrum? Is there a safe place to let off steam? What are the rules? Are they simple, fair, and make sense to the children? What happens if things don't go as expected? What's in place to help a child deal with disappointment? Will my child be encouraged to do as much as they can for themselves but not be left to struggle with things they can't manage, or allowed to take unreasonable risks? If you ask all your questions at the same time, it may feel like your child is too hard to include.
- Sometimes it's useful to sit and see how a session runs. Written policies are fine, but what happens in practice is more important. Teasing a child who needs help with buttons, changing a child's nappy in front of others, leaving a child to get on with it when they are struggling and grown ups who seem more interested in their own news than the children's will ring alarm bells.
- Ask other children, young people and parents what they think. Their views might offer different perspectives that enrich your snapshot.
- If you observe anything that unsettles you, it's best to ask rather than sit with your concern. Sometimes we misinterpret what we see; there may be a good explanation for something that might seem odd or unfair but we can't see it because we don't have the whole picture.
- The Disability Discrimination Act makes it unlawful for your child to be discriminated against just because of their disability. You have the right to challenge this and advice is available from the Disability Rights Commission or the Citizen's Advice Bureau.
- The English Federation of Disabled Sport (EFDS) is a one stop shop for information about different sports opportunities for disabled children and adults. Tel: 0161 247 5294.
- Mencap may have for information about local volunteer buddy schemes in your area.
- For quieter times at home Play Leisure Advice Network (PLANET) have a set of six factsheets about different aspects of play including sources of books and toys like dolls and puzzles which show children with different disabilities. Tel: 020 8783 0173. Write Away is a pen-friend club for disabled children. Tel: 020 8964 4225.
- For books in different formats try Letterbox Library: 020 7503 4801, REACH: 0845 604 0414 and Listening Books: 020 7407 9417 who all carry an extensive range of books reflecting positive messages about disability.
- If you're away from home, it's worth contacting disability organisations in the area you're visiting to find out about what's going on there for children with special needs.
- In London, Artsline is a specialist organisation that can tell you about access to places you want to take your child to, and also about special events.
- It is worth putting a lot of effort into planning holidays. Ask your holiday company to confirm in writing any special arrangements they have agreed. Double check your holiday insurance, often 'pre-existing conditions or illnesses' are not covered.
- KidsOut gives grants to fund specially designed toys, terrain buggies, fun days out, holidays and short breaks for both parents and disabled children. Their helpline is good at signposting. Tel: 01525 385 232.
- Special Families Homeswap Register links up households with a disabled child who are prepared to exchange homes for a holiday. Tel: 01752 347 577.
- The Family Fund: 01904 621 115 and Contact a Family: 0808 808 3555 publish useful factsheets on places to go on holiday, sources of funding, specialist organisations and planning travel arrangements. The Family Fund also gives grants towards holidays for families on low incomes.
- RADAR: 020 7250 3222 and Holiday Care 0845 124 9971 both publish holiday information for families of disabled children and give specialist insurance advice.
- Tripscope can help you plan your journey. Tel: 08457 585 641.
This factsheet was written by aMAZE and the Audit Commission.