Some children with additional needs may be given a diagnosis by a medical professional before or soon after birth. For others a formal diagnosis may come much later on or in some cases never at all. It is important to remember that whilst a diagnosis can provide an answer to your concerns, it is not essential for treatment, therapy or for applying for support. These should be provided based on the needs of the individual child.
If you have concerns or believe that your child may be delayed or have either a disability or special educational need, then it’s never too early to seek help. Talking to your GP, health visitor or a nurse can be the first step. They can help you access a paediatrician or specialist who may be able to help identify the cause for your concerns and offer support.
If your child attends a children’s centre or early educational establishment, professionals within these may also be able to provide information and support around your child’s development and suggest avenues for further support.
Getting a diagnosis for what is causing your child’s difficulties can often be a long and difficult process. Often several specialists may need to be involved and the time it takes to get appointments and co-ordinate all of the information can be lengthy. Even once assessed it can be challenging for a specialist to diagnose an exact condition. Many conditions share similar characteristics or symptoms early on and individuals can also display the same characteristics or problem in so many different ways. Although it is frustrating, sometimes specialists may need to wait to see if the child displays other signs of a condition, which may only be apparent later on. In some cases this may also lead to them making a diagnosis which is later changed.
Sometimes the cause of a child’s needs may never be diagnosed. This can be extremely hard for families seeking an answer to their child’s needs, but it is important to remember that this does not affect the care and support your child is entitled to.
If you are not happy or feel that all avenues of diagnosis have not been explored, you may be able to get a second opinion. You can ask to be referred to a different specialist by your GP being specific about why you believe this is needed.
After a Diagnosis
Receiving a formal diagnosis for your child’s needs can be a challenging and emotional journey and each person’s experience will vary. Many parent carers express feelings of shock, denial, anger, confusion or fear and some describe going through a period of mourning. Often it can be difficult looking ahead to a different future than the one you had envisioned for your child. These feelings are all normal and can take time to overcome. It’s important that you are supported through this period and having someone to talk to can be extremely beneficial.
Full of Life has a Buddy Up service whereby we aim to connect parent carers with other parent carers who have experienced a similar journey and may be able to offer valuable advice and support.