Divergent Learning Diaries

Patti and I are currently shopping for a new school.  It’s not a trip either of us particularly wanted to take and the most tricky aspect of it is that we can’t necessarily shop for exactly what we want.  We’ll just need to choose from what’s available.

Still, whatever we choose needs to be a really good fit.  It needs to satisfy Patti’s vision of what a school could look like, but it also needs to convince me that it is the right place for her.  Our criteria for what makes the school the right place for her don’t  necessarily align with hers.

Because Patti and I don’t have much to choose from it’s not a particularly extensive exercise.  However, we have talked at length about what might be suitable and have narrowed down to three local options of special schools.

Patti is autistic with a PDA (Pathologically Demand Avoidant)  profile.  The PDA aspect of her personality is significant.  Commenting positively on anything related to Patti, particularly if it’s something to do with her wellbeing, she will, almost without fail, have to dislike or reject my viewpoint.    Forcefully.

In this current school-searching situation It could go something like this.  I could say, ‘I love this school for you Patti.  They have amazing facilities and they are so kind.  I could see you being so happy here.’ Patti would likely have almost no choice but to disagree with what I have said therefore rendering the option of a perfectly decent provision off limits.  She’s  kind of hard wired in this way, frequently to her own detriment.  I have learnt that many of the suggestions I might make about most things are frequently received by Patti as expectations.

Expectations cripple Patti.  They create a weight that crushes her, to the point that she would deny herself an opportunity or experience that she might really want.  She seems to reserve the most extreme level of opposition to the people who she knows love her most.

As a result, the language used when engaging with her has to be carefully crafted.  Both my husband and I have read the PDA experience by Eliza Fricker, which brilliantly cracks open the trials of living with a PDA-er.  It also offers frameworks for approaching requests to avoid them feeling like demands.  I return to the chapters on ‘Collaboration’ and ‘Prioritising’  regularly  when planning interactions with Patti. They tend to involve all manner of horse trading and agenda juggling.  

Adapting our language to respond to need is also a  key feature of engaging with Patti’s autistc twin Joni, even though Joni does not have such a demand avoidant profile as she’s comparatively  low maintenance (at the moment)   In Joni’s case, she refuses to answer questions. I’ll substitute, ‘I’m seeing you smile so I am thinking you had a good day’ for ‘Did school go ok today?’  If we dont, at the end of a long day questions are received as a form of torture.  She’ll cover her ears and stim if we ask her questions.  

A significant part of our learning as parents of neurodivergent children has been around adapting linguistic approaches. We navigate a series of scripts that don’t come naturally to us.  But its fine.  We’re getting pretty good at it even if it has not become second nature yet.

Anyway, back to the plot.

Patti and I are shopping for a new school and I am extremely nervous on each trip about how the words I use could be the difference between Patti choosing the school that will be right for her or rejecting that same lovely school.  The pressure is unbearable.  I’m running scripts through my brain over and over.  Rehearsing lines and possible answers.  Always tentative. Borderline terrified of dropping a bum line; compromising her precious autonomy.

Our options for local specialist schools are very limited.  Patti needs a small school, with lots of therapeutic support and skilled staff who understand autism when it has manifested itself as a significant barrier to socialisation.  The environment itself must therefore be incredibly low arousal but at the same time have a buzz that satisfies her need for a regular dopamine hit (there’s an ADHD angle here as well).  We also know that she will need a curriculum that will challenge her and that she will need to work alongside peers who will talk about learning and are of a similar cognitive ability.  

There are three schools locally that come close to these requirements.  We are in the process of visiting them. 

Patti however, is very clear on what she wants in a school.  Friends.  She just wants a peer group.  This is her requirement.  PDA Patti can not be anything other than inflexible on this point.  So, her mental wishlist is very concise.  But incredibly prescriptive

So, yes.  There are three schools locally that we agreed we would look at.  Travelling a distance is not something she can countenance right now (Vulnerable children should be catered for locally and not subjected to hours of travel on a daily basis)  

One school is the brand new Local Authority Autism provision, one is a relatively new private small provision (about 60 students) and the other is a very popular Autism school of around 90 students.

The problem with PDA Patti, is that the very act of visiting a school is at least in part viewed by her as something she is being led towards.  And while she desperately wants to find a new place to  learn and grow and form connections, she absolutely must believe she’s taking the lead.

So she’s taking the lead.  She kind of has to for us to accomplish this mission.

Or does she?  And even, should she?

And this is where I am currently stuck.  

Here’s where we are at.  School no. 1 did not go down well.  There were no children her age.  She just couldn’t see her peer group.  Ok, fine.

School no. 2, she hates to admit it, but I think she kind of liked it.  A student arrived at the same time as her (he was an hour late).  He apologised sincerely for his lateness and said he’d just had a ‘shit’ morning to the receptionist.  His overly honest slip was promptly addressed but it made Patti laugh and helped her connect to someone there.  Unfortunately,  ‘kind of liking’ something for PDA Patti is complicated.  She finds real difficulty in surrendering to something by liking it.  Possibly for fear that opening herself in this way risks a hurt or rejection if something might not come to fruition.

School no.3 is (unsurprisingly) full.  They wouldn’t offer a tour.  Now, this is the one Patti has decided she desperately wants to go to.  Because, of course, they are full.  They can’t reject her.  There’s no actual threat.  There’s also no actual school place.

So school no. 2 could be promising if not for the fact that our SEND caseworker stated at the Emergency Annual review last week that if we stated school no.2 as our preference we would definitely see them at tribunal.  It’s a school they refuse to name, for no good reason I can see.  Some complicated politics I’m led to believe.  Fantastic.

So here we are.  Squinting at the prospect of a tribunal wait which I estimate to be about a year long, maybe 9 months if we are lucky.  That’s if we choose the school she ‘kind of’ likes.

Clearly there’s more work to be done with Patti to get her over the line.  A few more weeks of coaxing.  A couple of low stakes visits maybe.  Some opportunities for her to make more connections.  

Building these social pathways with children like Patti is a delicate dance, so carefully choreographed for fear a slight slip will dampen her ability to visualise a life where she begins to be able to reintegrate and find her future friends.   The formation of a future she can reach out to.  This is all so high stakes.  I cannot articulate the effort it has taken to develop the psychological toolkit I have had to use to even get her to this stage.

But to know that, even if I  do get her to accept, vision a new path, look forward to her learning again, she will have to wait for a year for me to get her in.  In a year, with an emotionally vulnerable child like this, anything can shift.  

What sort of a psychotic system sets up such a trap for a family such as ours to get stuck in?

I guess this is one of the issues there are when you are going shopping and you are not the one picking up the bill.  When you are at the mercy of a process that is brutally executed by cash strapped local authorities.

As a final side note, I’m currently learning to be a bit braver in my challenges towards my ND children, particularly Patti.  We have approached this latest step by allowing Patti to feel like she’s in the driving seat.  We know that forcing her into anything will backfire.  But at what point do we nudge more?  At what point do we begin to gently insist that she’s ready to engage?  Do we ever get to that point?  At the moment the answers aren’t apparent.

But, it is becoming apparent that Patti is intimidated by such an immense decision.

I decided earlier this week that I would be frank with Patti as I ricochet between doubts about how well I am supporting her.  I told her that I was keen for her to take the lead in choosing the right school for her but that i was concerned that if I didn’t encourage her, if I didn’t cajole her  in some way and she didn’t end up at school, she didn’t get the education that she has her heart set on, would 25 year old Patti berate me for failing her?  Would future her ask me why I didn’t just insist that she tried school no. 2?  Would she resent me for not being enough of an adult to her child self?

For now, I’ll go with instinct and instinct is telling me that she needs more time.  To process.

I’ll just have to trust this for now.