A Special Child in the Family


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Finding the Time and the Money

Caring for any child takes huge amounts of time, energy and money. Your child's special needs will make even greater demands on you in all three areas. No amount of wishing can make you grow an extra pair of hands or add an extra hour to the day. Instead you need to use all the help available and look for ways to cut your workload

Lighten the housework load

Housework is a strange commodity. It expands to fit the time available so if you have all day, that's how long it takes. However, if someone phones to say they will be visiting you in half an hour, it's amazing how you can turn chaos into order before they arrive.

It follows that one way to speed up housework is to strictly limit the time available. If you only have an hour to clean the house you will either work faster or clean less thoroughly. Either way, at the end of the time the job will be done. Try giving yourself an incentive to finish by a set time: watching a TV programme, a walk in the park or whatever works for you. If you choose something the children will enjoy too, you may end up with some willing helpers.

Your home doesn't have to be spotless all the time - that's an impossible target with children in the house. So accept that you will be doing well if you keep it reasonably clean and tidy. When you decide which housework to let slide, choose the items that matter least to everyone in the family. Personally I am ratty and bad-tempered when the floors are dirty but I can ignore dirty windows until I can barely see through them. Your family's priorities will probably be different.

Do everything the easy way

Modern technology has created a host of appliances to ease the workload at home. A good washing machine and tumble drier are marvellous for any Mum but particularly valuable if your child is incontinent or vomits frequently. A freezer allows you to shop less often while a dishwasher frees time for other tasks.

All these gadgets are expensive but they are worth the money if you can stretch your budget enough to afford them. If not, help may be available from the Family Fund or charities. Ask your health visitor, social worker or voluntary society for ideas.

Look for easy ways of doing everything, especially the jobs you dislike. Choose clothes in easy care fabrics and only iron the items that really need it. Only prepare elaborate meals if you love cooking - quick, simple food can be just as nutritious. If you hate shopping, try using a mail order catalogue or shopping online.

Leave time for yourself

However busy you are, try not to ignore your own needs. Skipping meals or eating on the run will leave you less physically able to cope. Time spent watching TV or reading is not wasted if it helps you relax. All work and no play makes you very tired and tired people make poorer use of their available time.

Combine activities

Although you only have one pair of hands, it's sometimes possible to do two things at once. Could some of your child's special help be combined with ordinary tasks? For example, can he practise his colours by matching the socks or could you do some physio while he is playing in the bath?

Learn to say 'no'

"Can you run a stall at the school fete?" "Please help with our flag day?" "You will come to the coffee morning, won't you?" The possible demands on your time from outside the family are endless. Learn to say "No" to all of them except those you feel you will enjoy and which fit easily with the rest of your tasks.

You may find it hard to refuse requests at first but saying 'no' gets easier with practice. Try not to feel guilty about doing so, even if other people try to browbeat you into changing your mind. Looking after your family is a big job and you shouldn't underestimate its importance.

You may feel particularly guilty about not helping the voluntary society concerned with your child's problem. Some parents find it helps them to pour energy into fund raising but many don't. They find such activities a great emotional strain especially if they have to keep justifying the society's aims to outsiders. Don't let yourself be pushed into doing anything that makes you feel uncomfortable. If you want to help but, like me, you can't face rattling collecting tins, perhaps you could do something else instead. How about addressing envelopes, talking to parents of newly diagnosed children or allowing your front room to be used for a parent's support group?

Claiming benefits

I'm sure you already receive one government allowance for your child - Child Benefit. It probably never occurred to you not to claim as you know you are entitled to it. You are equally entitled to any of the other benefits for which you qualify so don't feel guilty about claiming them either or let your pride prevent you accepting all the help available.

I am not describing the benefits available in detail as that information would soon go out of date. It is also too complicated a subject to describe accurately in the space I have available. The Disability Rights Handbook is an excellent guide with all the information you need on benefits. If you don't want to buy a copy yourself, your local Citizens' Advice Bureau or DIAL group probably has one you can look at. You can also find up to date information on the Internet and in leaflets available at post offices.

It's often difficult to tell if your child is eligible for one of the benefits specifically aimed at disabled people as the regulations are complicated and difficult to understand. If you are not sure, apply anyway. The worst that can happen is being turned down. Even then you can ask for your case to be reconsidered if you disagree with the decision and many such reviews are successful.

The Family Fund is different from other official help as, although it is government funded, it's administered by an independent charity. If your child has severe disabilities, it may be able to give you grants for specific items you need to help you cope better. Parents who have used the Fund speak highly of the help available as it is flexible enough to provide a wide range of items including household equipment, holidays and driving lessons. You ask for whatever you most need.

Help from charities

People all over the country raise money to help others. These fund raising groups are often happy to provide special equipment for children like yours and some will pay for other help like washing machines, hospital travelling expenses or holidays. The professionals working with you should know of charities willing to help and will often contact them on your behalf.

Perhaps you feel unwilling to accept help from a charity - many people are. Charity has become equated with pity and, as a result, it's become something to be avoided at all costs. That's a pity as the original meaning of the word "charity" is "love". If other people feel sufficient love for their fellow humans that they want to help you and your child, why not let them? Don't feel beholden. Take the gift of love in the spirit in which it is given and pass it on by showing love to others when you have the opportunity.

Some charities like to have a small presentation ceremony when equipment is handed over. They feel it helps their fund raising by showing the money raised is put to good use. If you feel too shy or embarrassed to co-operate with such publicity, make sure the charity knows that early on as it can save disappointment and embarrassment later. If your child is able to understand, ask his opinion too. He may have strong opinions for or against having his picture in the paper which don't match your own.