Seeking Guidance?

If you are approaching this (slightly shorter than usual) ‘read’ with a desire to effectively hear (from your internal head-voice) another person berate and criticise the local authorities, support agencies and professionals who are part of the diagnosis and support process for any child (or adult), I’m going to suggest that you save your time and stop reading here. That will probably be best, and it might save the elevation of your blood pressure too. There will be a bit of that within this writing, oh yes. However, I refuse categorically to place 100% of the blame around the broken systems and practises within the world of any support or processes for those with Special Educational Needs (SEN) entirely with the system itself. I see that as foolish, and I believe it is increasing the issue not helping it. Who suffers from that approach? As far as I can tell, only the children we are aiming to support. So, I won’t be doing that.

To be clear from the outset, yes, there is huge responsibility within the local authorities, the professionals who are part of the diagnostic processes and the support systems (along with all who work within them). Of course, there is.

There is also (clearly and obviously to all) a massively significant level of responsibility sitting with schools and all professionals who work alongside children with identified and labelled (or soon to be labelled) SEN needs within schools. Undoubtedly, this is a huge area where training is of paramount importance, and this is inevitably being juggled alongside other learning and development demands on teachers and support staff. But yes, there is, of course, a lot of responsibility sitting with the schools.

The responsibility of parents is obviously mahousive too. They are the people who will have influenced and responded to their child in the best ways they know how (as well as reactionary ways because they didn’t necessarily know any different at the time) as their child has developed and as they have become aware of additional identifiable SEN need in their child.

Another point I feel is relevant here is this: Every individual will be affected by their identified need in ways unique to them and even then, will react and respond differently for all manner of reasons at different times throughout their lives. Clearly, a one size fits all approach will not work.

Until our collective aim (being backed by action, not lip service) is to enable, to equip, to build up, to strengthen those with the identified need, and to have our focus solely on helping the individual before us to be as independent as they can be and to be able to manage themselves (and their triggers) as best they can, we will not make progress (not real enough large-scale progress). Until our collective aim is to equip our children with identifiable SEN to learn to seek help when they need it, whilst also learning to celebrate every success they have when facing one of their (probable) many barriers in learning, life, emotional development, relationships and all else, we will (likely) not see any significant positive shift from where we are now.

Find (or create) a path that will enable the child you aim to support to move forwards and do it in the way that works for them and for you, as far as is possible.  

What are these needs that our children have (or I have, along with many of you who have them too)? Are they not simply a grouping of particular responses/non-responses and other difficulties that have been put together under various different (let’s call them) ‘umbrellas’ of labels like autism? We (often, from what I have observed in families) take the ways of being, the barriers, the difficulties and group them and then name them as if by so doing it will change how the child is. It will not. They will still present the same behaviours and face the same barriers and difficulties. With that in mind, our collective role MUST be to help them identify those difficulties/barriers/triggers and find the best way through/past/over them as they can.

SEN Support systems are inundated with referrals from schools and families that are coming from a place of ‘help me’ panic from whoever made the referral. Often by this point, mental health concerns have kicked in as have behaviours of varying kinds all the way from full shutdown to physical violence. I get why the aim becomes the referral. It isn’t difficult to understand, in fact, it is fully logical (on one level). By pursuing any support that may be available, parents have a clear direction of travel if they seek a diagnosis along with the follow-on support. This channels their energies and gives them hope…but my fear is, this will not ultimately help them or their child in the long-term. It could do, if the support they received gave them insight and educated them in the best ways to manage the needs of their child and the behaviours of their child. It would benefit them if it was focussed on equipping their child to learn to manage self too. But the system is so inundated with referrals that it’s a miracle if a family get to the point of diagnosis as most cases only get as far as being ‘triaged’. So, getting to the kind of proactive support I’ve mentioned is unlikely for most, if indeed it exists in all places (it doesn’t).

There is an emphasis on ‘fixing’. We must (I believe) lose the emphasis on fixing. Our children with SEN do not need fixing. They need to be educated and supported to be enabled to be as independent as possible so that they can approach adult life as equipped as they can be.

Find (or create) a path that will enable the child you aim to support to move forwards and do it in the way that works for them and for you, as far as is possible.  

All three groups of people I have mentioned (those in the support system for SEN, schools and parents) end up fighting (effectively). Sometimes, the school and the families gang up on the support system. Sometimes, the families are fighting both the school and the support system. And it isn’t difficult to see why. They feel they need to do something, and this is something they can do and can justify they are doing it for their child. Sometimes the schools are also seeing issues with parenting skills that need to be supported and developed. (On that, find me a parent who doesn’t need educating about how to parent. There isn’t one. We all have needed educating about how to parent. Our children teach us even if we haven’t engaged in courses or had advice from our own families, but everyone needs to develop skills in parenting, so this isn’t a criticism but simply a life reality. And we live in a society where generations of previous questionable parenting styles affect how the current generation of parents parent and so it continues, doesn’t it?)

If we could all stop looking for a ‘fix’, if we could all start looking at proactive ways of promoting positive parenting techniques, if we could support schools to further develop ways of engaging children with SEN (ways that would benefit all children…for my thoughts on this, there is a suggestion in ‘Your Child is a School Refuser?’), if we could stop the blame game and start working together, if we could stop having the final goal to be a point of diagnosis and instead use any diagnosis to then enable the child/individual to achieve the best they can as independently as they can which will boost their view of self and will impact positively, if we could all stop thinking it should be easy and our part in it is too much and too hard…well, I wonder what could be.

I suspect we would have greater success in finding positive ways to enable and equip our children to learn to value who they are, how they are and what they can do. I suspect they will thrive in the arena of learning about self and life, meaning they will be able to manage their adulthood better than if they hadn’t been given some tools to help them cope with whatever difficulties they live with each second of every day. I suspect they will champion their ‘differences’ and be an advocate who wants to support others who have similar barriers or needs to them. I suspect it would all look very different.

But instead, (from whichever angle we look on) we fight the system, we blame the school, we complain about the parenting style, and we lose sight of the person in the middle. The person who simply needs to be built up to be fully themselves and able to thrive in the world as best as they can (which is for me the definition of thriving).

If we championed our children with SEN to accept who and how they are with the real needs they have, but also equipped them to overcome barriers they need to (to cope with life as an adult) or manage triggers through use of strategies that work for them…oh my. That would be a world I’d love to live in. It is possible, but only if we collectively shift to proactivity rather than fight and blame.

Our children with SEN do have super-powers. Those who parent them know it too, whatever that looks like and however it is presented: The most genuine and beautiful smile all the way to ridiculously high levels of skill in an obsessive area of interest. And it’s our job to help them see that too. They don’t need fixing. They never did. They are as they are and although some behaviours might need some positive support and some anxieties might need to be addressed and carefully managed, they need to see they are of worth, and they are beautiful just as they are.