Divergent Learning Diaries

This week there have been many news reports detailing the situation regarding SEND parents trying to hold down their jobs while either navigating the challenges of securing EHCPs, funding support for their children’s needs or providing the care and education that their schools have been unable to deliver.

Some of the statistics flying around right now are worrying but not surprising. One recent survey, ‘Fighting for your SEND child: the hidden costs’ (Support SEND kids) asked around 500 SEND parents about their situation.  Around 41% of respondents reported that they had to give up work completely while fighting to either secure an EHCP for their child or fighting to secure adequate provision once they had one in place.  If you singled out female respondents this rose to 47% who had had to give up work completely.

Sky news also ran a well shared story on the same matter (using the same data set) last weekend (07.09.24) throwing out stats like 1 in 3 parents found themselves in a position where they needed to reduce their working hours with 2 in 5 parents leaving work completely.  In their article they explored a number of the knock-ons from the obvious initial impact on SEND families where parents are being forced to either reduce hours or stop working.  

Bluntly, these are people being forced into corners to end careers,ambitions and maybe dreams while drastically curtailing essential streams of household funding. Any SEND parents knows that these incomes are even more essential when you are providing for a child with complex needs. (Legal advice, private assessments, lifestyle adaptations, tutors, mental health care, counselling all cost a lot money!) 

The article also argued that the lack of investment, as an example, into Early Years funding was particularly daft, as investing in this phase yielded excellent economic outcomes by dint of getting parents back into the workplace.  So, the systemic issues around lack of funding flowing into education support mechanisms for those who need it most is actually having a more harmful effect on the economy than properly funding it in the first place?   How ironic?  Major symptom of a broken system I would guess.  

Other impacts outlined the simple practicalities of caring for your child and just being physically able to do your job if your child has additional or complex needs.  A colleague was telling me about their child, who has Downs Syndrome, who has started her primary school education but she hasn’t been able to enrol in the wraparound care clubs because these provisions are not set up to meet her specific needs.  So, they can meet her needs in the classroom but can’t extend that to before 9 or after 3?  This arrangement will mean my colleague wouldn’t be able to arrive at work on time several times a week.  Or leave early. This type of practice feels discriminatory at worst, exclusionary at best.  What’s he supposed to do?  Many employers would just not be able to accommodate enough flexibility for their employees, although I’d argue that they should at least try.

I had to approach my employer about 18 months ago to ask for flexibility in the mornings as morning meltdowns (fear of school I expect) in my autistic daughters were becoming debilitating for the family.  I knew as a Headteacher it was critical that I set the standard for schools employees and students by arriving on time and the fear of letting the community down would really impact the way I would manage my children’s morning meltdowns.  The guilt would cause me to lose my temper, which in turn would exacerbate the meltdowns, the absolute last thing my distressed daughters needed from me.  They deserved better than this. I’ll never forgive myself for some of my reactions before their diagnoses; blaming them for making me late.  I cringe when I think about it.  Fortunately, when I asked for support my employer agreed and offered a short term flexible arrangement to get us through this ‘troublesome phase’ as a family.

I was, of course, very grateful for this period of  relief.  However, and you know what’s  coming, neurodivergence isn’t a short term thing that passes after 6  – 12 weeks and an employer’s review.  A year later I am back full time juggling my important role as best I can with my even more important role as a mother.  Those of you who have read my blogs will know that the ‘troublesome phase’ is far from over.  One of my daughters copes with school now, with the odd suspension or part-time day but the other just doesn’t.  Patti is  ‘in’ a mainstream school, with a chronically under-banded EHCP (therefore inadequate funding for her needs) which means she rarely attends lessons and is ‘out’ way more than she is ‘in’.  She struggles with feelings of failure and inadequacy which means she needs a lot of support so I need to arrange support from trusted family members when she is at home. They won’t be able to provide this forever. Patti reached burnout point almost a year ago, took a few months to recover and has now decided she ‘HAS’ to get her education just like everyone else.  She’s not yet out of burnout recovery so we are taking things super slow but there is a huge risk of a relapse.  An EP visited her yesterday and described her as ‘exhausted’ 4 days into the new term.

Every day, as I drive into work, I question whether or not I should be working.  What are the alternatives?  How can we carry on like this?  The almost constant fear that she will break down again looms constantly.  Am I the worst parent in the world for not jacking it all in and going to live in a caravan by the sea and doing some ‘unschooling’ with her? Every. Single. Day.  I plot the end of my career, one that I have loved and think about how we could make ends meet without my salary.  

The downside, and the reality of me not working would absolutely  involve downsizing and moving.  I have discussed this with my husband countless times and we would do it.  But we have to keep Joni where she is.  She’s doing ok – we know a move from her school, where her EHCP is working for her, where she has established positive relationships would be hugely detrimental.  The very same school environment that is supporting Joni’s progress is unfortunately toxic and debilitating for her twin.  How do I pick one over the other? 

Yes,  jacking in my career would be complex.  It is a possibility but would be life-changing for all of us.  It’s not the right decision for us now but we know that at some point, maybe soon, the balance could tip and we would need to make those drastic changes.  One of the reasons I stay in my current role is that I truly believe remaining in the school system as a Headteacher gives me a good chance to use my voice to  influence change and better practice in the school and family or schools that I work in.  To advocate for all children.  For those just like my daughters.  And how ridiculous is it that I plot my escape, my new life (one I don’t really want)  each day when actually, both my children are entitled to a statutory education provision that is adapted to meet their individual needs?

Who knows where we as a family will head.  One thing is for sure the lack of certainty over our future and the future of our children in an education system that isn’t really built for them only adds to the many pressures we face as parents of neurodivergent children.

I have infinite respect and admiration for the parents who have relinquished careers and financial security to fight for the very best opportunities for their children.  I only hope that if things get so bad for Patti, and the moment arrives for me to join their ranks, to become one of 47% of SEND mothers who leave their jobs, that I find the courage to tread the same path that those parents before me have done.  For her sake.

In the meantime, let’s raise our voices and not stop talking about the disgrace of a system that leaves the most vulnerable children excluded from and denied something that is their absolute right in the hope that the SEND system can be fully reformed sooner rather than later.