Last month, instead of moving house in order to accommodate our growing family, we decided to stay put and build an extension instead. We had very good reasons for this that were nothing to do with living in a much-sought-after Area of Outstanding Natural Beauty.
We had managed to secure mainstream nursery places for both our children locally - a huge achievement in light of not just the nursery's popularity, but also our older child's special educational needs statement, which had taken nearly a year to process.
Having already won a part-time place with her specialist nursery, once completed, our little girl Isobel - who has quadriplegic cerebral palsy - would be transferred to their brand-new Early Years Centre just up the road from us.
In staying where we were, we'd keep to a minimum not just travel costs, but also time spent travelling to Isobel's appointments at our local hospital and elsewhere. We'd reduce time spent negotiating council support of non-local services for her via telephone text relay, a service aimed at deaf people in the UK that we both use and also find time-consuming as a process. And in avoiding a house move, we'd also avoid having to re-construct Isobel's statement, and possibly having to fight for her continued attendance of the same dual nursery placement in principle.
As every family knows, time with our children is precious - and ours is even more so, given how much we already have to put aside for Isobel.
When does time sacrificed become time wasted? When it's unnecessary. Bureaucracy we can't avoid; battling with decisions we could do without, but only happens because people don't listen to us - even though as her parents, bringing her up on a day-to-day basis, we know our daughter better than anyone else.
This shouldn't happen - ever. We shouldn't have to work so hard to ensure that Isobel gets the high-quality support she needs, at the expense of our own quality of life together as a family. Our son Benedict deserves time spent getting to know not just his sister, but also us as his parents. We deserve time off for respite and quality time together alone. Isobel deserves to have a specialist nursery close to home, so we can rush to her side in times of trouble, just like we can with her brother.
At the moment, this isn't so easy to do. Until the new Early Years Centre opens, Isobel has to use council transport in order to get to the nursery 30 minutes' drive away.
Even though this free service has been arranged in recognition of the lack of an appropriate local specialist service - and even though we signed off risk assessments and health and safety forms personally - I still worry whenever Isobel is late home from the nursery. Of course, that is usually due to bad traffic, but I just can't get out of my head the fact that at such a young age, she is travelling with virtual strangers over a longer distance without us.
This is not like sending a non-disabled child away to preparatory school when they reach the age of six. We send Isobel further away from home not out of choice or even snobbery, but a pressing need.
As a disabled child with hardly any speech or signing skills, Isobel is particularly vulnerable to abuse, neglect and discrimination. That she is likely to be spending more time in the care of strangers than her brother, away from home, is therefore an irony that highlights the scarcity of appropriate services for children with disabilities across the UK.
This video, from Scope's Keep Us Close campaign, highlights how widespread the issue is for many families with disabled children.
But we are the lucky ones. We at least have the opportunity to send Isobel to a brand-new specialist nursery close to home - if not now, then soon. More than six in ten parents can't even get the services they need in their local area and are fighting tough, long battles to find them elsewhere. Just one in 10 parents say the process of accessing their services locally was simple.
Not having access to suitable services near home is taking a massive toll on families with disabled children. Half are missing out on quality time that families with non-disabled children take for granted - like celebrating birthdays, playing together or going swimming. Strained relationships between parents and relationships with their children further compound the stress and anxiety, along with the struggle to hold down jobs and maintain financial security, as this video illustrates.
I know my husband and I have had our tough times. The fact that we are still together after all the pain, anxiety, stress and depression we've had to endure is testimony to our strength as a couple. At the end of the day though, we are as human as any other family with disabled children, and never, ever want to go through all that again, not just for our sakes, but also Isobel and Ben's.
Those who have viewed and commented on my personal blog regularly since June 2010 - when I first wrote about Isobel's diagnosis - will know exactly what I mean. We are very lucky to have two very beautiful and contented children, and we are not prepared to compromise our time with them for another protracted fight on our hands.
But unless something is done about this NOW, we may as well join the half of the estimated 500,000 families with disabled children in the UK doing exactly that.
If you believe in supporting such families - and you agree that they deserve to spend quality time with their children, just like their non-disabled counterparts - then join Scope in their Keep Us Close campaign, which calls for the government to build a 'Provide Local Principle' in the Children and Families Bill.
What is the Children and Families Bill?
The Children and Families Bill - which is currently being discussed in Parliament - is meant to make it easier for parents of disabled children to access the services they need. Essentially it will:
- require local authorities to publish a 'Local Offer' of services they expect to be available in the local area
- put a new duty on local agencies like education and the health services to collaborate more efficiently in planning and commissioning services for disabled children
However, Scope does not think this will guarantee accessible, high-quality, inclusive local services. It won't remove the need to travel to get the support they need, or even the decision to be away from their child.
So Scope is calling on the Government to include a 'Provide Local Principle' in the Children and Families Bill, ensuring that when councils plan and evaluate local services, they have to make the provision of support close to home a priority.
If their 'Local Offer' does not provide good enough inclusive and accessible services for local families in your area, the Principle will also ensure that the local authority has a duty to improve it to a standard that they are happy with. This quote from a London mum sums up my feelings about what Scope proposes the government do.
It would be mind-blowing. It would mean togetherness and building relationships. It would just be heaven-sent, that once in our life, we could do things normally.
Visit Scope's Keep Us Close campaign to find out how you can get involved.
The original version of this post can be viewed in The Mostyn-Thomas Journal.