Information which may help you when:

Hearing the newsGetting supportTalking to professionalsContacting other parents

About diagnosis: Support for parents

Part 2

If you have recently found outyour child may have a disability,this guide can help you makea start at getting the right supportand good information.

A period of coming to termswith the news

“We were just told the nameof her condition. There wasno other information offeredto us: no prognosis; notreatment; no nothing. We hadjust been told our child hada critical rare disorder andwe didn’t know what to ask.We walked out of that hospitalfeeling stunned and alone.” Parent

Almost all parents describe a time ofgetting used to a new child as part of thefamily. When a child has a disability oradditional need, parents sometimes talkabout a period of coming to terms withthe news. Many feel shocked, upset, andanxious for the future. Some describethis time as similar to going through aperiod of loss and grief. If you have apartner, the two of you may beexperiencing different emotions atdifferent times and this might causetension in your relationship. Most saythat getting the right support and goodinformation can help enormously, bothat this time and as their child learns tocope with the challenges that living witha disability can bring.

“Our longing for a son who mightrun and play football with hisdad and brother has changedinto a joy that he swings his footat a stray potato which has fallenfrom the basket, without fallingover. Our high hopes for an earlyarticulate reader transformed intodelight that he uses his signs totell us that its milk he wants.”Parent

Getting support If you’re struggling with your ownfeelings, talking them over with someoneyou trust is likely to help. This might beyour partner, your own parents, anotherfamily member, a friend or a professionalinvolved in your child’s care. Or you mayfind it more helpful to talk to otherfamilies who also have a disabled childand have had similar experiences.

If you have a partner, the way youcommunicate with each other will bea strong factor in determining how youcope in the long term with your child’sadditional needs.

“Keeping talking to each otherand not bottling up our feelings– being truthful about what wereally think about our situation.” Parent

Support and understanding from otherfamily members can be a lifeline for someparents during a difficult period like this. Anypractical support they can provide can makeit easier to manage things like attendingmedical appointments and assessments.Emotional support can help you feelunderstood and more able to cope.

“Having a supportive extendedfamily nearby [helped]. Whenour child was younger wewould only leave him withclose family members whounderstood his needs.” Parent

We produce a number of guides forfamilies: ‘Relationships’, ‘Siblings’,‘Grandparents’ and ‘Fathers’ that you mayfind helpful at this time.

Contact with other parentsSome parents find it helpful to chat toothers who have gone through similarexperiences. Many medical conditionsthat affect children (including some veryrare ones) have a national supportgroup, usually run by parents of a childwith the condition. They can beinvaluable source of support and advice,especially when it feels as if nobody elseunderstands what you’re going through.

“It has been really useful talkingto other dads who are in thesame position as myselfregarding disabled children.’

Sometimes there won’t be a supportgroup for your child’s specific condition,but there may be a local multi-disabilitygroup for parents of children with any kindof disability. Contact a Family may havea volunteer parent representative in yourarea, too. If you don’t have a firmdiagnosis yet, there may still be groupsthat can support you around some of thechallenges your child is experiencing, forexample a charity for people affected byrestricted growth. You’ll meet otherparents who have experienced the samefeelings of isolation that you have, andwho understand the feelings that having adisabled child can bring.

“It really helps being able tospeak to other families with thesame disability or just a specialneed and compare notes onbenefits, therapies, medicalexperts etc. We use a localgroup who are excellent.” Parent

Call our helpline for details of nationaland local support groups for familiescaring for a disabled child. If your childhas a rare condition for which there isno existing network of parents, ourhelpline will try to link you on a oneto one basis with other parents caring fora child with the same condition. If youhave access to the internet you may wishto visit our internet based linking schemeat Web: http://www.makingcontact.org.

Free helpline: 0808 808 3555 Web: www.cafamily.org.uk

Professionals and localorganisationsSometimes support from familymembers and friends can make you feelunder more pressure – you may feelthey are looking to you for informationor you worry about how they might react.Or you may feel more comfortableseeking support from outside the family.

“Some of our family has givenus a lot of support butunfortunately it feels thatsome have turned their backson us or cannot face whatis happening.” Parent

Local disability and carer organisationscan be an excellent source of informationand support. They can tell you aboutlocal services for children with additionalneeds, help you to apply for benefits,and put you in touch with statutoryservices around education and gettinga break from caring. Many are also ableto provide counselling services. Fordetails of organisations in your area ringour freephone helpline.

“In the end, a local charityprovided us with counsellingand I’m sure that is the mainreason we are still togetheras a family.” Parent

Talking to health professionalsMany parents describe the news thattheir child has a condition or is disabledin some way as a huge shock. It maybe that in hearing the news, you aren’table to take in any other informationgiven to you. This is a very commonreaction. To help you the doctor ortherapist will usually send you a copyof the letter written to your GP.

It is very natural to expect answersstraight away, but answers might not bepossible for now. Over time you may findthe relationship you develop with healthprofessionals involved in your child’s careis quite different to what you’ve beenused to in the past.

If you have an appointment coming up,think in advance of any questions youwant to ask. To help you remember youcould write a list of questions and takethis with you. You can also take someonewith you if you need support.

Questions you might ask include:

• What happens next? Do I come backand see you?

• Do you have any written information?

• Can I check that I’ve understood whatyou said?

If, at a recent appointment, you leftwithout asking all the questions you thinkyou needed to, you can always ask forany follow up appointment to bebrought forward.

For more information on questions youcan ask at an appointment get a copyof the leaflet ‘Questions to Ask’by visiting the Department of Healthat Web: http://www.tinyurl.com/5vlc4m

The leaflet is available in a numberof languages and a paper copy canbe obtained from: DH PublicationsOrderline, PO Box 777, London SE1 6XHTelephone: 0300 123 1002 (8am – 6pm Mon to Fri)

Other guides in this series

How we can helpSupport for parentsWhat is developmental delay?Understanding behaviourGetting a diagnosisWhat if we don’t get a diagnosis?What is a genetic condition?Rare disordersSources of medical informationConcerned about your childPractical and financial help11

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Getting in contact with us

Free helpline: 0808 808 3555Open Mon–Fri, 10am–4pm; Mon, 5.30–7.30pm

www.cafamily.org.ukwww.makingcontact.org

Contact a Family Head Office:209-211 City Road, London EC1V 1JN

Tel 020 7608 8700Fax 020 7608 8701Textphone 0808 808 3556Email info@cafamily.org.ukRegistered Charity Number: 284912Company limited by guaranteeRegistered in England and Wales No. 1633333VAT Registration No. GB 749 3846 82Charity registered in Scotland No. SC039169Although great care has been taken in the compilationand preparation of this guide to ensure accuracy,Contact a Family cannot take any responsibility for anyerrors or omissions. The photographs in this guidedo not relate to any personal accounts. Order code: i32b

The Royal College of Paediatrics and Child Health

Other information available

• Relationships and caring for a disabledchild (UK)

• Siblings (UK)

• Grandparents (UK)

• Fathers (UK)

• Disabled children’s services(England & Wales/Scotland)

• NHS and caring for a disabled child(England & Wales)

• Holidays, play and leisure (UK)