Help and support is out there!
Your first contact may be your Health Visitor who should help you get the other support services. Unfortunately services will vary according to where you live, although services in Bristol are generally better than other areas of the country. It may be down to you to chase up services or referrals. It pays to be assertive in these situations - don't give up! If you feel that you are not getting the support you need, contact a member of the committee who should be able to help you.
Structure of Services .
NB This structure may vary from one Health Trust to another but will usually follow this pattern
Your Health Visitor should be a mine of information. Use her as your first contact for the services you will be offered. She should be able to direct you to the Community Paediatrician who will arrange your child's health and social care. Your Health Visitor should offer advice and support if you have any worries. (*ask for a Down's Syndrome growth chart - as the growth pattern your child follows will be slightly different to that of other children)
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The Community Paediatrician is the key person in the development of any early intervention strategies. He / She will thoroughly assess your child's abilities and health. Following this, your child will then be referred to the appropriate professionals known as a CHILD DEVELOPMENT TEAM. There will be twice-yearly review meetings with the team where you will discuss your child's development and ask any questions. You will at all times be consulted and encouraged to participate - these people know that the person who knows your child best is YOU.
The Speech Therapist will work with you and your child to promote language development. They can also help with any feeding and sucking difficulties. The programmes they follow are very simple and you will find most of the work is what you would normally be doing with your baby. Most parents find it a help to have some kind of structure to follow. You will be encouraged to use Makaton sign language. This may not seem necessary at first but many parents have found it extremely helpful especially as children get older and start communicating with others. Often children sign before they talk. (All parents use signs when their child is learning to speak - waving 'bye bye' etc.) You may be able to self refer your child to the Speech Therapist if your Doctor is reluctant.
The Physiotherapist will work with you and your child to promote movement, balance and co-ordination. He/She will advise you how to encourage rolling, sitting and walking. Again, many of these activities you may already be doing but it is helpful to have some kind of structure and guidance. The Physiotherapist will visit you as often as you feel necessary - usually once a month (not all children with Downs Syndrome will need the services of a physiotherapist).
Portage Teacher / Occupational Therapist
Portage is a home-visiting educational service for pre-school children with special needs. The Portage teacher will assess your child's current skills and development such as language, motor skills and behaviour. With this as a starting point long-term goals will be set. They will give you ideas for play/teaching activities that will stimulate your child's development. You will be asked to keep a brief diary of your child's progress. Ideally the visits are weekly but depending on how early your child starts Portage these visits may be less frequent. Unfortunately Portage can be quite difficult to obtain. Your Paediatrician is usually the person to refer your child for Portage but often there is a waiting list. The Portage service aims to start working with children by the age of two, however, sometimes it possible to obtain a place much earlier. YOU can refer your child for Portage if you wish.
Occupational Therapy may be offered instead of Portage - this is a similar service aimed at stimulating your child's development. Sometimes the Community Nurse can provide Portage.
Usually the Community Nurses in Bristol come from the Phoenix NHS Trust which is especially for people with learning difficulties. They can offer advice, support and help with all aspects of learning difficulties. Many Community Nurses will also offer some kind of Portage therapy and advice on development.
Audiology and Opthamology
Your child should have their hearing and eyes tested regularly. Your Community Paediatrician should refer your child to the appropriate department for these tests. They are usually carried out once or twice a year and you will be informed of the results along with the child development team.
Disabled Children's Social Workers
These social workers provide a service especially for disabled children and young people. They provide help and support - offering services such as counselling and respite care. They will also work closely with doctors and other health professionals and may become closely involved with your child's development team - if you wish.
These services are designed to help you and your child. It may seem a lot to be taking in - if at any time you feel you need to take a step back tell people and they will be more than willing to give you some space. You may at times feel inundated with offers of help but try to remember most visits are weeks apart and are usually quite short. The programmes and activities will become part of everyday life. None of these services are statutory - they can only be offered.
If you feel you are not receiving the appropriate support make sure you let people know that you are not happy, or see if you can make a self referral. Finally - don't feel guilty if sometimes you don't have time to be working with your child - after all you're only human! Talk to other parents - you'll find they feel the same as you.