‘It really helped to talk to people who understood some of the challenges we faced as a family.’
‘ I learnt to let go of guilt and doing it right or not, but just doing the best you can.’
These are two quotations from parents of children with special needs who have accessed the services of ‘Parenting Special Children’, an organisation led by trained health and education professionals who are themselves parents of children and young people with disabilities. They offer a ‘Sleep Service’, a ‘Diagnosis Support Service’ and a ‘Parenting Service’ and I was able to attend workshops on each of these at their Open Day on 3rd July.
The Sleep Service was launched in April 2013 in response to research into the sleeping problems of children with special educational needs. For example, 86% of children with autism and ADHD experience difficulties with sleeping. The aim of this service is to provide one-to-one sleep clinics and sleep workshops offering information and advice which will enable such children and young people and their families, to obtain a decent night’s sleep. Parents are encouraged to organise a bedtime routine and keep a diary to record progress. I was fascinated to hear that watching TV, playing video games etc. disrupts melatonin, the chief sleep hormone. It is recommended that all screens should be turned off one hour, preferably two, before bedtime. All families might benefit from this advice!
In their first year, the Sleep Service has offered seven workshops to 43 parents/carers and sleep clinics to 15 families. Four sleep workshops have been offered to 88 practitioners. In questionnaires filled in by participants after the workshops, they admitted to an increase in confidence and understanding of the different strategies offered. The Sleep Service is accessed either by self referral or practitioner referral.
I next attended a workshop about the parenting programmes which the organisation offers. These are written by Positive Parenting and include ‘Time Out for Special Needs’, Time Out for Autism’ and ‘Time Out for ADHD (Attention Deficit Hyperactive Disorder)’. Topics discussed include, for example, the impact of the child’s disability on their behavior, the way they may struggle in silence to keep up through the school day and then explode when they reach home. Perspective is important: can negative behavior be given a positive aspect? Parents are encouraged to see themselves as the child’s advocate and supported as they interact with professionals, such as teachers. These programmes are available free for parent/carers in the Reading and Newbury areas. In the past year there has also been a series of parent workshops in Reading and West Berkshire on ADHD, attended by over 400 parent/carers and practitioners and it is hoped that further workshops will be facilitated in the coming year.
Diagnosis Support Service
Finally, I attended an introduction to the Diagnosis Support Service, a one-to-one Peer Support service for parents/carers of children going through the process of getting a diagnosis or recently diagnosed with additional needs, whether a disability, learning difficulty, developmental delays or a genetic disorder. This is available to parents in the Berkshire West Area. It also provides an Information Service and a place to talk at the Parent Room at the NHS Dingley Centre in Reading. This service is provided by the Service Co-ordinator and a team of Peer Supporters, each of whom is a local parent of a child with additional needs or disability who has completed a nationally recognised training course. They may offer support in a number of ways, such as meeting up with a parent at the Information Room or at another public venue, talking on the phone or corresponding via email. Parents are supported over a period of time ranging from a few weeks to six months, depending on need.
One parent wrote that, ‘It was an opportunity to speak to someone who has experienced the emotions that you are going through and also the educational and social services system re. getting the support required for your child. Their experiences of what they did in their situation and what they found helpful was invaluable.’
For further information about any of these services and for contact details, please email firstname.lastname@example.org or ring 07876 275731 or visit the website: www.parentingspecialchildren.co.uk