What is a Learning Disability?
A learning disability can be defined as: A condition giving rise to difficulties in acquiring knowledge and skills to the normal level expected of those of the same age.
Learning disabilities can occur as a result of genetic or developmental factors, or damage to the brain, often at birth. They affect a person’s level of intellectual functioning, usually permanently, and may also affect their physical development. Learning disabilities tend to be fairly fixed and often cannot be treated or controlled with medication or other therapies. However, much can be done to help people with learning disabilities to make use of their abilities and to achieve the best possible quality of life.
If your child has special educational needs (SEN), all those involved in their education will take a step-by-step approach to meeting their needs. Your child’s teacher will use the Special Educational Needs Code of Practice as a guide. This will include setting a path which includes ‘School Action’ or ‘School Action Plus’ that are designed to give your child the extra support that they require. This may include the use of Individual Learning Plans. It may be considered that your child will benefit from having an Statement of Educational Needs.
Links to related organisations can be found in the ‘Learning Disabilities’ section on the Helpful Links page.
What is a Physical Disability?
The Disability Discrimination Act (DDA) defines a disabled person as someone who has a physical or mental impairment that has a substantial and long-term adverse effect on his or her ability to carry out normal day-to-day activities.
Persons with a physical disability will often require the assistance of a Care Manager or Occupational Therapist to assess their needs.
Everyone is entitled to an Assessment of Care Needs and can contact or be referred to their local Social Services Department. There are both Child and Adult Care Teams who work with persons with Learning and or Physical disabilities.
Please see our Helpful Links page for organisation that may be able to assist you on various topics.
Why is there a need to take folic acid?
Folic acid does not guarantee a healthy baby but research indicates that taking this 28 days prior to conception and throughout the first trimester will reduce the risks of birth defects such as Spina Bifida and Anencephaly* by up to 75%. It is recommended that all women consume 0.4 milligrams (400 micrograms) each day. Women with a family history of Spina Bifida or Anencephaly are advised to take a 5-milligram tablet of folic acid per day, which is available from their GP via a prescription.
* Anencephaly is an abnormal development of the brain and skull, which occurs during the first 28, says of pregnancy. The upper part of the brain and its protective skullcap are missing and the lower part of the brain and the base of the skull are not properly formed. Sadly this is always a fatal condition. Whatever anybody does the bay cannot and will not survive.
I am pregnant with a baby with Spina Bifida and/or Hydrocephalus what should I do?
Give yourself time to absorb what is happening to you and your partner both as individuals and also as a couple. Allow time to make informed, unhurried decisions which feel right to you. Try and talk about how you are feeling and take time to listen to each other during this difficult time. Try to be together when receiving any medical information and don’t be hurried into any decision.
This information may appear stark and may alarm you or it may be necessary to ask for it to be repeated. It is sometimes difficult for Doctors to assess accurately the degree of disability that may affect your child even when they are specialists within their field. You may wish to contact an organisation such as our own with practical experience of these conditions or to have someone to listen to you. We are pleased to help you in any way we can and will be respectful of any decision you make. The Internet is also a good resource and a website such as Ante Natal testing link may aid you with your decision.
Why is this happening to us?
The main thing to remember is that this is not your fault. Scientific research has shown that many factors contribute to Spina Bifida and Hydrocephalus.
We have decided to keep our baby is there anything we can do now to improve our babies situation?
Listed below are a few suggestions, which you may find useful:-
Take time to listen to both your own and your partner’s feelings.
Find out everything you can about Spina Bifida and/or Hydrocephalus and share this information with family and friends as this will help to prepare you and increase your support network.
Try to link in with an Association such as KASBAH and find out about the experiences of other parents in situations similar to your own.
Find out about specialists within the fields of Spina Bifida and Hydrocephalus. Your baby may require an operation as soon as it is born which may involve the closure of the back. It is therefore important that a skilled neurosurgeon is available as this may reduce the level of disability.
Remember you are not alone, expert advice is available from KASBAH.
These are just a sample of the many unanswered questions you may have. Should you wish to share your thoughts or to talk with someone then please do get in touch.