I recently attended the launch of Family Voice Surrey, the new local forum for parents and carers of children with SEN and disabilities in Surrey. It's part of the National Network of Parent Carer Forums and aims to give Surrey parents a voice in the policy and decision making process for disability and SEN services.
As part of the table discussions we were asked to identify the top three challenges facing families with children with disabilities and SEN in the county. When each table's facilitator stood up in turn and read out their lists, almost every table had identified the same issue - information and support after diagnosis.
Everyone agreed that was is needed is an independent support worker who had all the answers to the questions that a diagnosis sparks in parents. This includes where to find information about assessments, financial assistance, support groups, access to services and education about how to help their child and so on.
When your child receives a diagnosis of any illness or condition, it is a very distressing experience that can also feel very isolating, especially if you do not know any other parents in your position. It can also, at the same time, be a relief that you were not imagining these symptoms and that you now have a name for the problem. This is particularly true when the child has a hidden disability such as Asperger Syndrome or ADHD. For a while, parents need to take stock, maybe reassess their hopes and expectations for their child. Perhaps they also need to grieve.
But then comes the stark reality that they have to take action to help improve their child's life chances - and that means finding accurate information and at a local level - who is a good paediatrician, which are the appropriate schools, does my child need an assessment for a statement and how do I go about that? How do I find out about occupational therapy or speech and language therapy?
There are lots of great volunteer organisations out there, but the problem is finding the ones that are right for you and your family. So, what is needed is someone who can be sympathetic and knowledgable and who can act as a support and a signposter, maybe even an introducer to that the family needs.
So, who can provide such a service? Who will fund it? These are two good questions - maybe someone reading this post has an answer. If you have any ideas how this can be achieved or what else a newly diagnosed family might need, please leave a comment...
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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I found myself in this exact situation and felt very isolated. Friends and family became bombarded with my constant talk of not knowing what to do or where to turn when my toddler (later diagnosed with ADHD & Aspergers) was excluded from his 7th nursery school. They tried to be supportive, but I must have become quite a bore during this time.
I was eventually ‘rescued’ by a lovely Nursery headteacher, who pointed me in the right direction and helped me get my son statemented.
I wanted to help others find independent, non LEA or NHS affiliated support – as I found these organisations often had an ‘agenda’ and a set approach to my situation. I set up H.A.P.S (Horsley Area Parent Support), with a friend who had children with SEN. We advertised through our doctors surgery, local churches, magazines & word of mouth. We quickly grew into a support network that numbered around 15 regular members. Meeting regularly (monthly) in member’s homes over a coffee, we shared experiences, exchanged info and discussed schools etc. I continue to run this group, although the initial members have all found their feet now they are in suitable schooling situations.
I believe the success of our group is that it is a local group, run by parents, for parents. I continue to receive calls from new members and I feel a nationwide network of such groups could be established.
I wish I had met me 3 years ago!! I was lucky to find a real Florence Nightingale in the guise of a local paediatric nurse who saw our son for toileting issues – she turned out to be the one who found everything out for us, referred us to places, and generally fought for us!!
Now I am a member of 2 or 3 parent support groups where we share ideas and knowledge with each other, lend each other books and support each other at meetings, etc.
I think the way forward is parent mentors – people who have been through it all already and can really understand how you feel – who funds them, well that’s the big question!!