Support from professionals
Resources
There are many local and national organisations that can offer information and support to parent carers. Some cater for specific disability groups; others are for anyone who may be caring for a child with special needs.
General support
Amaze's helpline is there to give advice and support to parent carers about any issues that affect them. We can send you our publications or offer you practical one-to-one support with education issues and claims for Disability Living Allowance. Or we may just be a listening ear in times of trouble. Find out more about how Amaze can help.
Other important local sources of information and advice for parent carers are Brighton & Hove Disability Advice Centre, The Carers Centre and the council's Family Information Service.
Contact a Family is a national voluntary organisation which offers help for parents of disabled children. They produce information sheets on a variety of topics, a quarterly magazine and a directory with information about specific conditions.
Sometimes you may need more specific support.
Bereavement support
Some parents may live for years with the knowledge that one day their child will die. Some of you may have already lived through that.
When a child dies or is terminally ill, it is a desperately sad and sensitive time for parents, siblings, other family members and close friends. Other people don't know what to say and, being afraid of saying the wrong thing, they often say nothing at all. Those of us who have lost a child, however, often want to talk about him or her - we long for people to mention their name and share memories and stories. Frequently our lives have been very closely involved with our child's physical and medical care and suddenly this has all stopped. There's a huge gap. Some of us found it invaluable to talk with other parents who had had the same experience, or just someone who could understand our feelings.
Hospices
Children who are terminally ill and need nursing care or have complex physical and medical needs, may spend time in a hospice, an environment in which most children can feel safe and where the care is specialist. Hospices are bright sunny places. Parents often find the support offered is invaluable. There are two children's hospices used by local children and their families, Chestnut Tree House and Demelza House.
Professional support services for bereavement
For parents in this situation, there are a number of sources of support that may prove useful. The Child Bereavement Charity (CBC) runs a confidential support and information line that gives help and guidance to bereaved families. Their website also offers lots of literature and resources and an online forum that enables parent to share their experiences. For parents who have lost a child, the Child Death helpline, run by bereaved parents from Great Ormond Street Hospital, provides home visits, a befriending service and a booklist. The Compassionate Friends and CRUSE support both bereaved parents and other family members, and may have local contacts and self-help groups. Brighton and Hove Bereavement Support's service is available to anyone who has recently suffered the loss through death of someone they love. They offer trained visitors who will support you through your grieving. They also offer a service called Stepping Stones which is designed for children and young people. It is a church-sponsored service but is offered without any religious bias.
There are also local counselling services that provide support especially for family members of disabled children, young people and adults, which we have listed in the Counselling section further down this page.
Practicalities
As if coping with grief itself wasn't enough, there are funeral arrangements to sort out as well. Funeral directors don't charge for their services for babies' and children's funerals, and a number of them provide extra support for families who have lost a child. You may also want to create a 'memory box' containing perhaps a lock of hair, first teeth, photographs, a handprint or your child's special toy. It may also help to get your child's friends and siblings together to celebrate his or her life.
“I recently went to a thanksgiving service for a young disabled child. It was lovely - showing what he liked to do, painting, music, and so on. At the end his five classmates, all in their wheelchairs, each let off a balloon outside to say goodbye. It was very special.”
Counselling
If you think you'd benefit from a place where you could talk openly with one person about how having a child with special needs is affecting you, you could think about counselling. There are various kinds of services available in this area. Help may be short or longer term, it may be free or involve payment.
Some of us have used a trained counsellor when our child was first diagnosed and later, but we had to ask for it - counselling isn't offered routinely. The Carers Centre publishes a directory of counselling and therapy services. Often the first person to ask is your GP or someone involved with your child's welfare.
The Parental Support Counselling Service (PSCS) provides low cost counselling by qualified counsellors, to parents, siblings and carers of a child or young person with a disability or special need. There is a small charge of between £5 and £20 and the counsellor will discuss this with you in advance. Parents who have used the service have told us it really helped. Call them on 01273 682253. Siblings and children with disabilities can also be offered sessions, or they might sometimes be referred on for play therapy if unable to benefit from a talking or arts based therapy.
The Brighton & Hove Federation of Disabled People also offer a counselling service for disabled people and their parents or carers. The initial 50 minute assessment is free and though subsequent sessions will cost something, this is negotiable. No one will be turned away due to an inability to pay.
There is a counselling service run by Chailey Heritage Clinical Services for families whose children attend any of the Chailey services (school, respite, outpatients clinic, head injury unit). Parents can contact the service direct by calling Jane Steeples on 01825 722112 ext 7736 or they can ask a professional working with them to make a referral.
There is also a counselling service at Seaside View, run through the CAMHS Learning Disability Team. It's for families living in Brighton and Hove who have a child with significant learning disabilities and / or life limiting conditions. Once again, parents can self refer by contacting Jane Steeples, this time on 265787, or ask a professional to refer them.
The Patcham Parent Counselling Service is available to all parents/carers who have children at schools in Patcham including Patcham House, Patcham High, Carden Primary, Patcham Juniors and Patcham Infants. This is a free counselling service which gives parents and carers the chance to talk to someone in confidence about any problems or personal difficulties they may be experiencing. The manager of the service is Hillary Newbrook and she can be contacted on 07841067413. There is also a landline answerphone for the service on 01273 222563.
Relationship counselling
Sadly, having a child with special needs may lead to much unhappiness between parents, and even the breakdown of their relationship. Sometimes it's because it's so hard to spend time together away from the children; maybe one partner has to devote so much energy to dealing with appointments, therapies and so on that the other partner feels left out, or chooses to stay uninformed of what's going on, for example. If you're beginning to see warning signs that it's happening to you, organisations like RELATE can offer support and a place to let off steam. For appointments at Brighton Relate call 01273 697997.
The flipside of that is that some parents find that having a child with special needs brings them closer together as a couple.
Rise (formerly the Women's Refuge) provides specialist support services for women, children and young people living with the effects of domestic abuse. Their Break for Change group is for parents and young people where the young person is being abusive towards the parent.
Family work
Most of us have found that having a child with special needs creates stresses and strains within the whole family. Sometimes getting help which focuses on the needs of everyone in the family can be helpful.
Your family could be referred to the Child and Adolescent Mental Health Service (CAMHS) to see if you could get family therapy. Families are usually referred to CAMHS by a professional such as a GP or social worker but you can refer yourself. There are also Family Support teams in each of the three areas of the city (Central, East and West). Again you would usually be referred to them via your child's school, your GP or another professional but you can also contact your local Duty and Family Support Team direct.
Family Link is an early intervention project for East Brighton families with children age 4-11yrs. They work with parents, individual children or the whole family on issues such as relationships, schooling, managing children's behaviour and bullying. They work in partnership with families building on their strengths and the resources of the family and their community.
Family Solutions offers counselling and family mediation to families who are experiencing stress, anxiety, bereavement or relationship difficulties. They are based at Hove YMCA and can be contacted on 07793 325648.
Also based at Hove YMCA, The LINX project is an independent, confidential service offering flexible support to families via schools in Portslade, Hove, Hangleton & Knoll and Patcham. LINX also has two workers who provide specialist family support to parents with children who have mental health difficulties, in partnership with the CYPT Schools & Communities team and CAMHS primary healthcare workers.
Children's Centres
If you have a child who is under 5, many of the services you will need to access are located in your local Children's Centre. These include health visitors, advice on child development, support for additonal needs, speech and language therapists, family support, early education and childcare. There are six main or Children Centres in Brighton and Hove: Conway Court in Hove, Moulsecoomb, North Portslade, Roundabout in Whitehawk and Tarner Children's Centre at Ivory Place. Smaller gateway children's centres also provide information, advice and have services visiting periodically. These smaller centres service a local area and are based in schools, libraries or community venues.
Help with health issues
Sometimes the help you are giving your child may cause you physical pain, particularly if you are having to do a lot of heavy lifting. Brighton and Hove's Community Back Care Advice Service is a free service for carers who are experiencing or worried about back pain. The service gives practical advice and training to spare your back and can loan equipment to help you minimise the risk.
The local Primary Care Trust's Expert Patients Programme (EPP) runs a course called Looking After Me which is for carers with long term health conditions. The course aims to increase carer's confidence in dealing with his or her own health and improve quality of life.
There are a number of organisations offering complementary therapies and treatments, some free or at reduced prices for parent carers or children with special needs. Find out more about local complementary therapies.
You can find contact details for all the organisations mentioned here in Useful contacts.
Sleeping, Feeding and Toilet Training
Contact a Family produce three useful factsheets about feeding, sleeping and toilet training:
http://www.cafamily.org.uk/paptSleeping.pdf (0.1Mb)
http://www.cafamily.org.uk/paptFeeding.pdf (0.1Mb)
http://www.cafamily.org.uk/paptToilet.pdf (0.1Mb)