Reasonable adjustments

I have been putting off writing this for a couple of months now. Unsure how to explain, how to start. I still don’t know how to explain or how to start but I do know I can’t hold the fire inside me anymore. I am alight with a desire to not accept anymore. I don’t currently have the resources to join the many amazing people fighting for change. Change for broken systems, change for media conversations, change for mental health support and services, change that will make the lives for all neurodivergent people better. These people have my deepest respect and I follow them closely, however I know that my current capacities keep me very much on the sidelines. This is not from a lack of desire to join them but more an acceptance that right now this is the most I can offer.

What I can and will do is hold the line. I will correct, I will advocate, I will not accept less than deserved. I will educate myself and others, I will hold space, I will support. I may not be able to help move forward yet but I can ensure that nothing goes backwards.

This is one of the ways I hold that line, forgive me reader but I am going to dive straight into the middle….

If there is one phrase I have quickly come to loathe as a parent to neurocomplex kids, it is this one: “reasonable adjustments”. You know where you can stick your reasonable adjustments!

Let’s break it down.

The trusty Oxford dictionary defines the word reasonable as “fair, practical and sensible” and adjustments as “a small change made to something in order to correct or improve it.” By these definitions, this term should be perfect - it says exactly what we want to happen. The reality of what these words mean, within modern British systems, is, sadly, very different.

Let’s start with why it isn’t “reasonable” at all.

“Reasonable” is a subjective word and open to different interpretations by different people. In the context of advocating for accommodations and needs, it offers schools, workplaces, councils, GPs and others an opportunity to close the gate. Where “reasonable” by dictionary definition would apply equally to both parties, in these situations only the person representing the establishment in question is capable of being reasonable; the parent, guardian, carer or young person is deemed by the system to be incapable of being reasonable.

This is not an attack on any person doing their best within a school, council, etc, I have met many advocates in the system, and they are fully aware of the constraints. This is an attack on the systems in which they are forced to operate which are designed to operate in ways that they do purposely. This comes from first-hand experience and repeated anecdotal evidence. The damage this causes to the relationship which should be being built between all parties involved, in order to help the person they are advocating for, is, in most cases, irreparable.

This is also the point: every person in the room should be advocating for the child or adult in need of help. Even when systems are helpful, you tend to enter these meetings with your guard up, ready for the fight and intimidation tactics you have been taught to expect. Again, this can affect the relationship before you have even begun. Trust, open communication and empathy in these situations is vital and anything that creates distrust will make any outcome less effective, ultimately affecting the individual who desperately needs support.

So, here is my suggestion: an alternative word for reframing these spaces as a more equal, collaborative place. A word that mitigates this systemic behaviour. That word is “workable”.

“Workable” because we understand that accommodations need to be workable for all involved. They need to be financially workable, they need to be organisationally workable and implementable by schools, workplaces, councils, GPs, and other services. They need to be workable in terms of actually doing something to correct or improve and help the person they need to help (the child or adult in question).

This change to the language, this reframe, would allow all parties to look at these interactions in a completely different way; by working together, rather than opposing and defending.

Connection and trust - that is what is really going to make the difference in these interventions.

The research has been clear for decades that early interventions create the best outcomes, so why would we not all work towards this?

Personally, I want to focus on the capability, the aptitude, the attainment level and the expansive thinking that should be being applied in these situations. The frame should be that “this person can achieve, and we can help them by changing XYZ”. I am not saying everything is achievable for everyone. What I am saying is “let’s think what this person can achieve, given what we know, and let’s work together to help that happen.” This is the best possible outcome for each individual.

If the entire conversation is framed about what they can do or be involved in, what could that do to your mindset? To their mindset if they are in the room as well? In making this small change, what can that do to the way you approach everything? To the way the child or adult approaches everything for the rest of their life? How they see themselves? Concentrating not in a way that ignores areas that are true difficulties, but in a way that reframes the resources they do have and applies them in the most effective way.

My own personal experience of this was that I had to stop pursuing my son’s EHCP because of the constant conversations, the constant thoughts, the constant pressure of thinking about what he couldn't do. How much was he “suffering” (that was the actual language being used)? They needed to know just how badly he was not coping for a span of a minimum of a year before they would even assess his needs. How utterly disgusting and degrading is it, that this is an acceptable way to treat people in what is supposed to be a civilised country! Every person we came in contact with told me how severe he was, how quickly I should be applying for help for him but when it came to applying for that help, no one came to see him or meet him all - he was reduced to a number and a questionnaire.

In person, the need was irrefutable and that was precisely why they keep the process impersonal. Better, when dealing with an inhumane system, to keep it as impersonal as possible. The people who set the systems up knew how to make it work. For all those people it doesn’t apply to, it is easy to read the headlines, have your opinion and move on.

If I had a £1 for the number of times someone had told me how great it is that schools can take SEND kids, right up to the point the SEND kid is in the same class as their child and disrupting their learning...

It was just too much for me, mentally, that I could not carry on with the process. Because the reality is, it meant years of suffering and fighting, taking people to court, mediation, forms, appointments, hoops and hoops. The alternative is zero support, zero help, nothing. So, I absolutely get why so many people have no choice but to do that and, of course, not everyone’s experience is the same as mine.

For me, there was no choice and I hold some guilt about this as well - I was not capable of it, more of that thinking, more of holding all that, more of believing that to be true. As well as fighting an unjust system and triggering my own rejection sensitivity. All while trying to hold down a job, by the way, parent other children, etc, etc. When I decided to stop, I decided to recover us both by flipping the script; I wanted to focus on what he could do, what he is exceptional at, where the gains were. It didn't change anything about what he couldn't do. He still can't do things; he may never be able to do things. What benefit, to him or me, is it to focus there? I focus on what he can do, and how he can learn, interact, grow and become independent. I know what his limits are, they are clear and well-defined, but I can also work to make him and all those around him see his true possibilities, see him as a person, not a problem to either fix or ignore.  I can make him feel his success at achieving, thriving, happy. Most of all, I can let him be himself.

Also, for me, it was about accepting that I didn’t know all his limits and that they change, that I needed to always be ambitious for him, to let him try. I work hard now to find people that share that same ethos: that he can do more than he is capable of now. Sometimes, I recognise that I am the barrier and that he can do more or different things with other people who also believe in him.

And so, I will hold the line by no longer accepting and giving way to these unjust and inhumane systems; I want a better way, a different way, a way that doesn’t reduce me and my family to nothing, a number, a statistic. I don’t want my children to be just statistics, just acceptable losses, just cannon fodder for the fight.

If enough people stand up, change happens. So, I am going to stand up. I am going to say “Stop.”, I am going to say “That’s enough.” And maybe I won’t see the change, but I will know that I stood up, because the more we stay quiet, the more the systems win - the more the systems’ wheels can continue to turn unhindered, unaffected, which is just how they like it. Enough is enough, I’m not giving an inch anymore and I invite you to join me if it feels right for you.

That's what I'm aiming for at Adventure In Minds: a reframe for families, parents and adults who are going through that as well.

I am offering my community another way, another direction, another mindset. I want to be able to ripple out ideas that bring hope to people and help them get through another day. Because I know what life is really like in this reality every day. How it is always changing yet it needs to stay steady, the pain you absorb, sometimes physical, the rejection, the grief, the fear, the isolation but also the amazement, learning, joy, love and happiness. My son is a pure heart, a child of energy, of nature and I plan to keep it that way.

I can offer a place to rant, to say those things you feel are too shocking to say, a place to sit and exist without judgement, without fixing, but with understanding, with care and most importantly for me, with hope.

Take what you need, leave the rest.

Yours,

Samantha Dawn