Finding out that your child has a special educational need or disability can be a confusing and emotional time for parents. While some may receive a specific diagnosis, others may be told their child has an additional need or global developmental delay. In some cases you may never receive a specific diagnosis at all.
As well as dealing with your own emotions and concerns for the future, you may also need to offer support and advice to other family members such as partners, children and grandparents. You will come into contact with a number of different professionals during this time, and at some stage will want to find out more about your child's condition and learning disability itself.
One of the biggest challenges is coming to terms with the fact your child's future will be different to the way you imagined it. Getting in touch with national and local organisations, support groups and other families can help you to deal with a diagnosis, and can be a valuable source of support and advice. It is also important to remember that, with time, your emotions will become easier to manage – many parents report that after a diagnosis they discovered qualities of strength, determination and positivity that they didn't even know they had.
In some cases, a disability may develop before birth. This could be due to:
- the baby suffering damage to the brain or spinal cord
- the mother having an accident or illness during pregnancy
- a genetic problem developing during pregnancy
As well as regular antenatal check-ups and ultrasounds, some women will be offered other tests during their pregnancy if there are concerns about their baby's development.
Amniocentesis is a test that takes place during pregnancy to check on a baby's progress, and to see whether there is a chance of developing one of a number of genetic conditions. The test is usually recommended for women over 35 who are at an increased risk during pregnancy because of their age. It may also be recommended for women who have already had a child with a disability, or who have a family history that indicates a problem is more likely to occur.
Chorionic Villus Sampling (CVS)
CVS is another diagnostic test which can detect certain genetic disorders. It is an alternative to amniocentesis and can be carried out at an earlier stage of pregnancy.
All tests carried out during pregnancy have risks, so it is important to consult carefully with your doctor when deciding whether or not to go ahead. Not all women will decide to have antenatal testing. If tests are taken and a problem is discovered, there may be the possibility of early treatment while the baby is still in the womb. If the problem is serious, parents will then have the choice whether to continue with the pregnancy or to have a termination.
Some parents will receive a diagnosis after their child's birth. This could be due to:
- a problem that developed before birth
- a problem during birth, for example if the baby did not get enough oxygen, or was born too early
- a childhood illness or physical accident during early childhood
Although some conditions are easy to diagnose, other parents may never receive a diagnosis, or may be told their child has an additional need or global developmental delay. This is a difficult term to make sense of, but it indicates that a child will take more time to reach milestones in some or many areas of their development.
Whilst a lot of children’s additional needs are identified in early childhood, some children and young people can receive a diagnosis much later.
My child is under 5yrs old
Speak to your Health Visitor or GP (Doctor). They may share your concerns and make a referral to a child specialist i.e. a community paediatrician for further investigation.
If your child is in an education setting you should speak to their key person or the SENCO (Special Educational Needs Coordinator). They may share your concerns and suggest that you request a referral from your GP to a specialist or decide to monitor progress more closely.
My child is over 5yrs old
Speak to your child or young person’s class teacher or SENCO (Special Educational Needs Coordinator). They may share your concerns and recommend that you speak to your GP about a referral to a specialist for further investigation.
You should ask about the additional support that the education setting can put in place to support your child’s development. Further information about the support that schools must put in place for pupils with SEND can be found on our Area Wide Education Offer.
During this time, parents will need time to talk about their feelings and any decisions they are going to make. Close family and friends can be a good emotional support, although talking to a GP, health worker or counsellor may be easier for some people at this stage.
During and after a diagnosis you may come into contact with a number of different health care workers, including GPs, obstetricians, paediatricians, occupational therapists, health visitors and portage workers.
You’re likely to feel overwhelmed with information, whilst trying to manage your emotions. Don’t be afraid to ask questions, for professionals to repeat themselves or to explain things more clearly.
If you’d like to talk to someone who has first-hand experience of a child/young person with SEND you can contact Southampton Parent Carer Forum who can offer both emotional and practical support for parent carers.
Link to website - https://www.sotonpcf.org.uk/
Link to Facebook page - https://www.facebook.com/southamptonparentcarerforum
For information, Advice and Support on any element of your child/young person’s journey through SEND you can contact https://www.southamptonsendiass.info/