Children with special needs: Moving forwardsAlamy


Support groups, chat rooms and shared experiences

Feelings of isolation are very common after a diagnosis of special needs, and may well persist if your child's needs make day to day life or socialising difficult. For many parents making contact with others who share their experiences can feel like a lifeline.

There may be a local support group for families affected by your child's condition, or for carers of children with special needs in general, which you could attend.

Discussing your feelings with people who may have experienced very similar emotions and problems can be empowering and uplifting, and other parents are often a fount of invaluable information. In the early months after diagnosis it can be very reassuring to see how others, further down the line, are coping.
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Play groups and social outings specifically designed for children with special needs or where they are clearly welcomed are also a great way for children to meet others, let off steam and have typical childhood experiences without parents needing to worry about them or their children being judged.

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Alternatively support groups and charities may have internet forums, help lines and chat rooms which offer useful advice and information as well as a sense of shared experience. These might be particularly helpful if you feel uncomfortable with the idea of talking face to face with strangers.

Your GP or one of the professionals involved with your child should be able to give you information about relevant groups and organisations. Or you could contact your local branch of contact a family who will help find relevant services and may be able to put you in touch with other families in similar situations.

Counselling may be a helpful means of coming to terms with your child's diagnosis, particularly perhaps if their needs are very great or their future uncertain. Talking to someone professionally with whom you can be totally honest – sometimes this is hard with family and friends – can be beneficial.

Your GP should be able to help find a counsellor or visit Iapt.nhs.uk for more information about available services

Useful links:
Contact A Family

Cafamily.org.uk

Special Needs in the UK
Specialkidsintheuk.org


What parents say
Helen, mother of Freddie, 10, says:
"I felt desperate to talk about Freddie and how I felt, but I couldn't over-burden friends and family. Going along to a local support group was great for me, though it wouldn't suit everyone. There were very few dads there!

"I didn't have to explain everything, people understood and I made some good friends. We could actually begin to have a laugh about our children's quirks which was really nice."


Top tips for coping with family life


Don't compare your child to others

Enjoy the progress they are making for its own sake, not as a sign of whether or not they are catching up with others. See your child as an individual and celebrate their successes.


Make time for yourself

Caring for a child with special needs can be exhausting - physically (particularly if your child has physical or mobility issues or does not sleep well) and emotionally.

Try and find a way to have a break sometimes. It is not in your interest or your child's for you to be at breaking point. Don't be afraid to ask for help from family, friends or people you meet through support groups. Contact a Family and other carer's charities also often short periods of respite to parents.


If you are in one, make sure to also make time for your relationship

The strain of having a child with special needs can be very high. Practicalities and finances may make whisking yourselves off for a weekend in Paris unrealistic, but a conversation over your dinner is better than nothing.


Decide what is important to you

Does it matter if you haven't done the hovering today? Are there simple things which will make your life easier? Sometimes doing nothing is more important than anything else.


Pick your battles

If your child has behavioural or social problems think about which things really matter to you and concentrate on those.

There are lots more useful tips from families and experts at Netbuddy.org.uk.


What parents say

Alison, mother of Dan, 15, who has ADHD, says:
"Bed time was very hard when Dan was younger because he just wouldn't settle. In the end we let him watch films in bed. It might not have been the recommended thing, but at least he stayed in one place and we all got a break."

Rosie Noble, family support worker, says:
"One father reported that mealtimes were a battle zone as his son could not sit at the table. In the end they decided to give him his meals separately and found he was much happier."

Useful links:
Carers UK:
Carersuk.org

Home Start:
Home-start.org.uk

Contact A Family:
Cafamily.org.uk

Health Talk Online:
Healthtalkonline.org

Day Trippers:
Daytrippers.org.uk


Benefits, respite, childcare: What's out there?

Life with a child with special needs is often more expensive, more exhausting and more complicated than that of the average family.

The GP, health visitor, or a charity such as Contact A Family should be able to give advice on the practical and financial support available as well as support groups (see links above). Provision does vary by area for some types of support, and, as usual, securing assistance can prove to be a bit of a battle.


Disability Living Allowance (DLA) and other benefits

This is the main non means-tested government paid benefit for children under 16 who need more help with personal care or mobility than a child of the same age who does not have a disability.

Each of these two elements - personal care and mobility - is considered separately and the amount received depends on the level of the child's need in each (sometimes a child may only qualify in one element). For instance a child unable to walk will qualify at the highest rate for mobility assistance while one who requires extra supervision outdoors, due to a lack of safety awareness, will be paid at the lower rate.

Families can apply for DLA if a child has a physical or mental disability or a developmental disorder (such as autism), or the child has difficulties walking or moving around.

The form for DLA can be requested from the Benefit Enquiry Line (tel. 0800 882 200) and payments can be backdated to the date the form is requested. (The form is available online at Dwp.gov.uk/eservice though this may not allow for backdating of payments).

The DLA form is long and quite complicated. Many parents find filling it in daunting - not to mention depressing, as the emphasis is very much on the negative. Your local Contact a family branch should be able to help you complete the form or you could a useful online guide at

Useful links:

Cerebra:

Cerebra.org.uk

Contact A Family:
Cafamily.org.uk

For more information about DLA see Gov.uk/dla-disability-living-allowance-benefit.


If your child qualifies for DLA at the middle or highest care rate and you earn less than £100 a week after tax, you may also be eligible for Carer's Allowance. This is means-tested and considered in conjunction with any other benefits you receive. To discuss your eligibility call the benefits helpline on 0800 88 22 00 or see Gov.uk/carers-allowance.


Respite care and direct payments

If the demands of caring for your child are very high, you may be entitled to some form of respite – effectively childcare suited to your family's needs – so that you can have a break or get to do activities with your other children which may otherwise be difficult.

Respite may be during the day or overnight and could be in your home or elsewhere (a specialist after-school club for instance). You may be linked with a foster carer or a professional respite worker.

Families of children with special needs may be eligible for Direct Payments – a sort of voucher scheme, whereby a sum of money is given for the family to spend on the support they deem most appropriate.

Provision varies widely and in all cases is likely to begin with an assessment by social services.

Useful links:

Gov.uk/apply-direct-payments

Nhs.uk/CarersDirect

Daytrippers.org.uk


Early years support

Parents of pre-school children with special needs may be eligible for portage – a scheme through which a trained worker will visit you and your child at home, bringing toys specifically chosen to support your child's development. The worker will visit for regular play sessions and offer advice on building your child's skills.

The availability and extent of the portage service depends on the child's need, and the area. For more information see:

Nhs.uk/CarersDirect

Portage.org.uk