Keep a diary
When you are speaking with professionals about your concerns, or you are providing information for a referral it helps to have kept a diary of your experiences and why you are concerned.
Don't compare your child or young person to someone else's
The way your child or young person's development progresses is different to another. Neurodevelopmental disorders are a spectrum and whilst there are distinctive characteristics that must be present to obtain a diagnosis, how they present in your child or young person and the impact they have on their development will differ between individuals.
Talk to others and try not to become isolated
Families often say they felt alone when their child or young person was initially identified as having a neurodevelopmental need, especially where the child or young person displayed challenging behaviour. There are several voluntary organisations across Suffolk that are ran by parents of children with a neurodevelopmental disorder who will be happy to have a chat with you about their experience and what techniques they found helped their child or young person.
Take notes
When you are attending appointments with clinicians you will likely be provided with a lot of information, which can be overwhelming. If you can, take a pen and paper and write down anything of significance as this will help you remember at a later point
Ask questions
You will have lots of questions throughout the process and it is never a wrong time to ask them. Sometimes it is helpful to write these questions down, so you do not forget them when you are attending an appointment with clinicians. If there is more practical help you are needing, you can access services through the SEND Local Offer. Even if the person you speak to doesn’t know the answer, they will know someone who will.
Access training courses and resources
Lots of organisations provide free training for parents and carers of children and young people with neurodevelopmental disorders and how to meet their needs. Some are specific to a particular diagnosis such as ASD or ADHD, but others are topical such as sleeping or toileting. You will also find lots of tips and advice in the Suffolk Resource Pack or can attend one of the NSFT Neurodiversity Parent Workshops.
You don't need a diagnosis to access support
The prevalence of neurodevelopmental disorders is increasing, this means that the length of time you are waiting for a diagnosis may be long. However, access to support for you and your child or young person's needs is not reliant on a diagnosis.
