Something I’ve known a lot of people do is think through how they’d use their professional expertise if a similar situation to that which affects their clients/patients/customers affected them. For example, I’ve read of doctors who would refuse a lot of the care they’d recommend for their patients.
I’m somewhat unusual for a professional in this field, in that I don’t have children, let alone children with SEN. But I have spent some time thinking about what I’d do if I had a child with complex needs.
I have enough to say about this it has to be divided into more than one post – this is Part 1.
The first thing I’d be thinking about would be “Am I still living in the right place, given the change in circumstances?” In some cases it can be obviously early on that a child will have significant disabilities, in others it can take years to get to a full understanding of their needs and/or they can have needs that can be expected to worsen or be more difficult to cope with in the years to come. In other cases again it would be reasonably clear that what my child has is reasonably mild as a difficulty so the answer is that there’s no need to look at moving house. It is said that it takes a village to raise a child, with reference to all children, not specifically disabled children, but the demands of caring for a disabled child can be considerably in excess of those of a “standard issue” child, so, to my mind it makes sense to make life as easy as possible for me. The disabled child is only one member of the family and there are lots of factors to consider around location. Some of the factors I think are important are:
* Proximity to people who are able to help out with caring for my child.
* Proximity to people who I’m close to, but who can’t, for whatever reason, provide much practical help.
* General cost of living – disability is expensive, so there’s good reason to consider living away from the more expensive south east.
* Proximity to any specialist services that my child would need to see frequently. I’d take this one quite cautiously, given the NHS habit of closing specialist services and moving them elsewhere every so often.
* Proximity to work and if I shared a household with other adults their work.
Once I’d reached a view on the broad area of the country where I wanted to live, my next considerations would be:
* Public transport – how good are the local buses/trains? Do I want to move to somewhere with better public transport? If I had an able child who I anticipated might not be able to learn to drive due to blindness or epilepsy etc or if I had a child with moderate learning difficulties, I’d prioritise living in a town with good public transport links to promote my child’s later independence.
* Road links – how easy is it for me to travel by car to places I need to go to reasonably often? How easy is it for people to come and visit me? Am I somewhere it’d be reasonably easy to get paid care workers to come to?
* What sort of house/flat do I want to live in – if I had a child with Autism, severe learning difficulties and challenging behaviour, I’d be looking for a house with a large private garden that lends itself to being enclosed with a fence and that’s not too close to any neighbours who’d be disturbed by my child being noisy in the garden. If I had a child with physical disabilities or other needs that might necessitate the house being adapted with a Disabled Facilities Grant, I’d pick a property, probably with advice from an Occupational Therapist, that lends itself to future adaptions. I’d also have in the back of my mind the potential for the property to eventually be split into flats or similiar, if there was a possibility of my child living here permanently and me moving out once they’d grown up.
* Proximity to a hospital if my child is likely to need lots of appointments.
* Assessing the site layouts of the local state funded schools; do they look accessible to my child? There can be considerable difficulties in obtaining placements at specialist independent schools when you live very close to them, as often the local LA will develop an alternative provision to resist placing children in them. As looking at where I’m living would be one of the first things I would do, I’d be unlikely to have a full view on which schools I would consider ultimately appropriate for my child anyway. I’d be making sure I wasn’t living too close to any specialist independent school I thought was a realistic possibility (unless discussions with the school and my research about the available LA provision made me consider it safe enough). I’d be looking for schools that are ideally LA maintained (more controls on them than on Academies) that are reasonably modern (if my child has mobility problems) and, as I’m an agnostic atheist, ideally ones that don’t have a religious foundation. If I had a child with a hearing impairment, I’d be looking for a school with good acoustic performance. If there happened to be a school that was smaller than average or had smaller classes I would look at it closely. Sometimes a smaller school is able to more easily provide bespoke intervention as there are fewer people to liaise with. Sometimes a larger school has more resources and is more able to be flexible, so the answer isn’t clear cut in the abstract. Smaller classes aren’t an effective intervention for SEN in themselves, but they might be useful if I had a child with sensory processing difficulties or who was blind or deaf.
Employment / Money
In parallel with looking at where I’m living I’d be thinking about what I’m doing employment wise. It’s very often the case that parents of disabled children find themselves ‘forced’ into giving up work (as opposed to wanting to work less for their own reasons), causing financial difficulties. As I now run KJM Legal, my assessment would be different from that of somebody working for an employer, but I would still need to consider how to manage my workload and what adjustments in staffing I would need to make. If I were working for someone else, I would be looking at negotiating more flexible working arrangements or possibly changing job to something that is more flexible.
Whether I’ve moved house or not, my next step would be creating a plan of works for my home to improve its usability for me and my disabled child. This is the next step for me, because home is the environment I control and I can make it work for us in ways that make my life easier. If I had a child with poor awareness of danger I’d be making at least one room in the house ‘safe’ for them to be there without me. If I had a child who tended to climb or was otherwise really at risk of injuring themselves, I’d look at the whole house to make sure all areas my child had access to were safe for them. I’d start with the most urgent work and have a plan for completing other work over time. If major renovations were needed I’d get started on the process to apply for a Disabled Facilities Grant early on, because I know bureaucracy is slow. I’d also be thinking about fire safety and ensuring I had an up to date plan (even if only in my own head) for how I’d get everybody out of the house in the event of fire.
I’d try to make use of my own social networks to put support in place for me and my child. I’d want to do this in a way that’s protective of my child’s future privacy, in the sense that their disability is their story, not mine. I might use one of the newfangled apps that are designed to allow you to arrange support amongst family and friends for disabled people. I’d want to be clear with people what they’re able to offer and arrange for them to do the things they’re able to do that are actually helpful to me. Even in theory this sounds like potentially creating a series of awkward conversations, but it’s probably worth doing, because it would help me avoid exhausting anybody’s good will by relying on them too heavily or by asking people to help me with jobs they don’t want to do. It might be useful:
* for me to have a list of people who are explicitly OK with me texting/phoning them late at night if I’m stressed
* for people to offer to take my child out for an afternoon each month
* for people to offer to come over to my house with dinner each month
* for people to offer to do babysitting for me / have my child overnight
* for people to accompany me to appointments/meetings – to note take for me/supervise my child while I concentrate on discussions (and sometimes the mere presence of another person makes a difference to the way a meeting goes)
If my child is less needy I might be able to avoid involving Children’s Services via an assessment of my child’s needs under Section 17 of the Children Act 1989 if there’s enough support available within my social networks. If there isn’t enough support available this way, then by being able to demonstrate that I’m already making use of the support that is available, I would have good grounds to resist any faffing by Children’s Services in putting in place effective support. Sometimes the moral high ground is useful and defendable ground. And I would have better ability to manage the process of challenging Children’s Services by making use of the available support to free up some of my time and energy.
Establishing support – paid for
Finances depending I’d arrange support that saves me time and stress eg. employing a cleaner each week, employing a gardener over the summer. I’d think through which jobs need to be done and work out which ones I need to do myself and which ones I can delegate or pay somebody to do for me.
Depending on my own stress levels, I might also look at ongoing counselling for me in the voluntary/private sector.
All of this would be about caring for myself well to enable me to support my child.
Establishing support – for my child
How I’d go about doing this would depend very much on my state of knowledge of my child’s difficulties and on their age. And actually this is too long to deal with here, so I will cover it in another Part of this series.
Extra-curricular type activities
What does fit here is that I’d encourage my child to join activities that match their abilities, interests and that are supportive of therapy aims and that reasonably fit into the week without imposing too great a burden on me. I’d be likely to encourage my child to go to Rainbows/Beavers/Brownies/Cubs/Guides/