You have just been told your child has hemiplegia

You may be reading this page because you have been told your child has hemiplegia. You, or perhaps your health visitor, or a doctor or nurse at the baby clinic may have first noticed that your child was only using one hand to explore his or her world. Or maybe your baby was late in sitting up or achieving some other milestone, and you were referred to a hospital for further investigation.

Coming to terms with the diagnosis

When you heard the news that your child had hemiplegia you were probably in a state of shock and confusion. You may feel okay one day and distraught the next. You might be feeling isolated from your family and friends, who may appear to be denying that there is any problem – after all, your child probably looks just like any other child of the same age. Even talking to your partner may not be easy, since you will each have different ways of dealing with your feelings about the situation.

Many parents have said that the process of coming to terms with the diagnosis is rather like bereavement, when parents mourn the child they might have had whilst adjusting to this ‘different’ child and an unknown future.

Telling parents that their child has a developmental problem is not easy for the professionals either. You may feel that you would like to know more, or on the other hand that you have been told more than you can take in at once.

The information on this page has been put together to help you as you begin the long relationships you as a family will develop with the professionals who will play such an important role in your child’s life.

What are the effects of hemiplegia?

The most common questions we are asked are:

Will my child walk and talk?

Nearly all children with hemiplegia will eventually walk and talk, although they may be a little later than their peers. Some children have other problems in addition to their hemiplegia which may have an impact on walking and speech.

Will the hemiplegia get worse?

No, although as your child grows you may find that it affects more aspects of their development than are immediately obvious. Nor will it get better. However, its effects can be minimised by appropriate therapy.

Will my child go to a mainstream nursery and school?

Most children with hemiplegia attend mainstream schools, with or without some extra support.

You can find out more about hemiplegia in our Hemiplegia section, under What is hemiplegia? and Frequently asked questions.

What next?

After diagnosis you will probably be referred to your local Child Development Centre (CDC) or Child Development Unit (CDU). For the early years of your child’s life this will be your most important link, the place where your child will be offered appropriate therapy and all aspects of their development will be assessed and monitored, and where you can get information and support.

Your GP will of course continue to deal with your child’s normal ailments, vaccinations, etc. but more specialised care will be in the hands of the paediatricians at the CDC/CDU.

Some CDCs/CDUs run parents‘ groups where you can meet and share experiences with other parents. They are also good sources of information about services and benefits.

Physiotherapy

In most cases, the first person to work with a child diagnosed with hemiplegia will be a paediatric physiotherapist, who will be concerned with all problems relating to movement and posture. Our Treatments section has more information about physiotherapy.

Occupational therapy

Occupational therapists (often called OTs) look at your child’s everyday life and devise ways of minimising the effects of their hemiplegia, both at home and at school. Our Treatments section has detailed information about occupational therapy.

Speech therapy

Speech therapists are concerned with every aspect of language. They monitor both your child’s understanding of language and their ability to use it in speech.

Psychologist

A developmental or clinical psychologist will monitor and assess your child’s cognitive development from time to time. They are particularly involved in assessing children before they go to nursery or school. Clinical psychologists are also helpful in dealing with problem behaviour.

Other treatment

Some children and young people with hemiplegia may benefit from other forms of treatment. These include:

• Splinting. The physiotherapist or OT may suggest and design a splint to help keep your child’s wrist, thumb or foot in its correct position. Find out more about splinting
• Serial plastering works in much the same way as a splint to gradually move the affected limb into the correct position. The limb is usually plastered at regular intervals for several weeks at a time.
• ETA is an operation to lengthen the Achilles’ tendon, to enable the child to keep their heel on the floor.

Other sources of support and information

Portage services are run by most local education authorities. Portage workers are trained to work with parents and young children at home. Their role is to help the parents identify specific goals for their child and devise ways of achieving them. Parents can contact the LEA themselves or be referred by a health visitor or GP.

Toy libraries provide an opportunity to borrow and try out a range of toys which might be useful. Specialist play advisors are sometimes available.

National disability organisations may well have groups in your area. There may also be local support groups for parents and carers.

Local libraries are good places to start. They may have a council one-stop shop providing information on all local services and state benefits. They may also offer Internet access and reference material.

Benefits

• Children and young people with hemiplegia and their parents/carers may be able to claim DSS benefits.
• Disabled Living Allowance (DLA), for help with personal care, is payable from the age of three months at higher, middle and lower rates.
• DLA Mobility Allowance is payable from the age of five years at either higher or lower rate.
• A parent/carer may claim Invalid Care Allowance if they fulfil certain criteria.

You can read more in our Benefits section, or contact your local Benefits Agency (or One Stop Shop) for application forms and current rates.

Taking each day as it comes

Your child’s hemiplegia will inevitably have an enormous effect on the whole family. Just as it is difficult for the professionals to predict how your child will develop, so will you be unable to predict how you are going to cope with all these new demands.

The best way to cope is to take each day as it comes and only take on as much as you can manage. You may feel that your whole life is given over to treatment and therapy of one sort or another, but you must take care not to become obsessed by this at the price of ordinary family life.

Remember, your child is a person, not a ‘condition’. They need not just therapy, but ordinary play, stimulation and love.