‘I was so stressed about my son’s autism that my hair fell out’

Heather was struggling to find the support she needed for her son Nicholas and was under a huge amount of stress, then she posted a message online asking other parents for help, and a woman called Jane got in touch.

New research from Scope just found that two-thirds of parents have had difficulty getting the support and services they need for their disabled children, and as a result are left feeling frustrated, stressed and exhausted.

Like many other parents with disabled children – this comes as no surprise to me whatsoever!

Heather and Nicholas
Heather and Nicholas

My 13-year-old son Nicholas has severe autism and learning disabilities and I’ve had endless issues getting the support I need for him. We’ve had to fight every single step of the way.

We even had to fight to get him a diagnosis in the first place – neither of the local hospitals wanted to take him on! Presumably because of the cost implications…we got passed from pillar to post and had to get our MP involved in the end.

But one of the worst times for us as a family was when Nicholas was placed in a school that wasn’t right for him.

It wasn’t the right environment for him at all. It got to the stage where he was doing nothing but lying on the floor each day and lashing out because he was so frightened. It was so upsetting.

We kept saying: this isn’t good enough! Over and over again. But nobody would listen.

I was so stressed about it all that I lost a lot of weight and got alopecia and my hair fell out. I saw my GP and he suggested anti-depressants but I didn’t want to take them.

In the end the school wanted to expel him because they couldn’t cope – but they still couldn’t find a school for him. So I got him signed off sick and took him out of school altogether.

In desperation I put a post on an online forum asking for advice from other parents of disabled children about finding the right school for Nicholas.

By chance a woman called Jane who lives in my area got in touch. She described her own son and it was like she was describing Nicholas.

She let me know that her son had just got a place in a brilliant school nearby, a school which I’d never even heard of.

Jane was amazing and helped me through how to get Nicholas a place there – it was a battle but we did it.

It is a school specifically for children with autism and it’s brilliant, he loves it. The change in him as been incredible.

If I’d never posted that message I would have never met Jane – and we’re still in touch now.

Scope has launched a new online community where parents of disabled children and disabled people can share their experiences and get guidance and practical tips from other parents and disabled people.

I’ve agreed to be one of the ‘online champions’ for the site and hope to be able to help people out when I can, like Jane helped me.

But I don’t have all the answers – and I expect I’ll be looking for more advice myself too at some point.

Chatting online to other parents certainly isn’t going to solve all your problems.

But at the very least it can be a huge relief to vent, and have some contact with other people who understand what you’re going through, instead of bottling things up.

Please do get involved in Scope’s online community. Because as well as asking for advice and tips you might be able to give it too.

And I know from experience that as well as getting support, it can be really rewarding to be able to say to someone who is struggling – I’ve been in that situation, I’ve dealt with that, and I’ve come out the other end.

The Children and Families Act can have a real impact – let’s make the most of it

“I feel like I am letting my daughter down and having to fight for the support she rightly deserves.”

“It would be lovely to hear ‘how can we best help you?’ rather than ‘what is it you are asking for?’”

Today Scope released new research which paints a stark picture of the emotional toll paid by families with disabled children as they fight a seemingly never-ending struggle to get support.

Two thirds of parents with disabled children have had problems accessing local services over the past year, with eight in ten parents feeling frustrated, stressed or exhausted as a result.

Stories like these are exactly why the Government promised the Children and Families Act would be a ‘once-in-a-generation’ reform of support for disabled children and their families; ending the battle many parents fight to get the support they desperately need.

Last week the changes made by the Act went ‘live’. The Act has the potential to make a real difference to the lives of families with disabled children.

Three changes that will help families with disabled children:

  1. Families should know what support is available locally – and help to shape it

The Act brings in a new ‘Local Offer’ of all the services and support for children and young people with disabilities or special educational needs from birth to 25. This will make it easier for families to know what support they can access.

Councils now have a duty to plan services in their area for all disabled children, not just those with special educational needs. So children who do not need support at school but have other needs will also be able to access support.

Scope’s Keep Us Close campaign focused on making the Local Offer as strong as possible so that families could access good, high-quality services close to home and hold local councils to account.

The Government listened to Scope’s concerns and strengthened the Act to give parents a greater say. Councils now have to consider the views and experiences of parents and young disabled people when they develop their Local Offers.

However, the Act was also an ideal opportunity for the government to ensure local authorities promote inclusive and accessible universal services that all families can use. This didn’t happen and feels like a missed opportunity.

  1. A stronger focus on preparing for adult life

The transition to adulthood can be a time of great anxiety and stress for young disabled people and their families. When they are deciding what sort of future they want, they have the added complication of big, confusing changes to all the services they receive.

The Act brings in a clear expectation that all agencies will work with families to plan the move to adult life and adult services from the age of 13 at the latest. There is more flexibility for local agencies to carry on providing children’s services up to the age of 25 and the Local Offer has to include support for young people to move into work, education or training and live independently.

This should help to remove the current cliff edge where support falls away from age 16 to 18.

  1. Joined up support – with a focus on ‘the best possible outcomes’

Families frequently tell us that they have to negotiate each aspect of their child’s support separately, and feel they are passed from ‘pillar to post’ by professionals from different types of services.

The Act brings in stronger requirements for all the services that support disabled children and young people to work together and promote ‘the best possible outcomes’ – at all levels, and for all disabled children and young people. It also introduces Education, Health and Care Plans – a single document that captures all the support received by children with special educational needs.

Next steps

The Act is a substantial change to the system of support for children with disabilities and special educational needs.

The reforms will require a cultural shift for a wide range of professionals, including commissioners and those working on the ground. All local councils need to make sure they provide adequate support for families with disabled children. A key part of this is listening to their views and experiences when planning and reviewing the Local Offer.

To help families navigate the new system, over the next two years Scope will be running a new Independent Supporter service in six areas across the country.

Independent supporters will help families with the move to Education, Health and Care Plans: supporting them to identify their legal rights and their needs and aspirations for their child, access any information they need to choose the right services and understand how to challenge decisions.

Legislation can only do so much – everyone involved needs to act and make sure the reforms work for families with disabled children.