Anxiety and Responsibility

We've been through so many emotions over the past 5 years that it became harder and harder to write about them so I have only written sporadically.  So many emotions, all tumbled and jumbled together. Where do I start?  How do I break them down? Big emotions. Internalised emotions.  Projected emotions. Emotions from others that were taken on and worn like a coat.  Emotions like a cyclone, swirling around but hard to take just one and examine it.  Which one do you start with? Today I'm thinking about anxiety and responsibility.

When life is in chaos it's hard to think straight and formulate a way forward and we can often feel like we are just going around and around in circles.  Chaos shows itself in many different ways in our house and has various different root causes. I've come to accept that there is no rhyme or reason to things but that chaos theory reigns.  For someone as spiritually minded as I am this has been an interesting concept to accept.

Anxiety brings with it the most chaos I think.  It certainly does in our house.  It's the main reason that Katie and Pip are no longer in school.  Their anxiety seems to be attached both to their neurodevelopmental diagnoses and is part of how their brain functions but has also been exacerbated by challenging experiences at school and the death more recently of their dad. 

Anxiety impacts me too as I absorb the children's projected anxiety and the anxiety that follows me around in the disguise of a bag of responsibility.  The relentless anxiety that comes when you face constant judgement and criticism for your parenting when your children can't attend school or make questionable decisions on the internet.  The anxiety that shows itself disguised as anger and aggression when the children feel overwhelmed or over-stimulated. The anxiety that builds up at the thought of walking into school or opening up to another professional. The anxiety that I never know how the children will react to something in their day.  The meltdowns, being called horrible names that I have never called anybody in my life, the anxiety when objects are thrown and I worry that I won't know how to de-escalate the meltdown. The anxiety with the fear that I am getting it all wrong and all those judgemental people are right.  Some days that anxiety makes it hard for me to breathe.  

Anxiety wraps itself around much of our day in our house.  All the things we take for granted that we can do and achieve can be impacted by anxiety.  Getting out of bed for starters.  Anxiety has a way of keeping your body stuck under the covers, welding you to the mattress.  Anxiety obviously comes from fear.  Fear can be a known fear or the type of fear that changes shape and is hard to understand.  Fear can be woven into our very being through developmental trauma.  We may not know what we're afraid of.  We may not know why we have that fear.  What we live with are the physical symptoms of that fear. Racing heart, sweaty palms, heat that rushes through the body, fast breathing, feeling sick, rushing in the head, whooshing in the ears, everything sounds loud, everything around us feels too fast and chaotic.  It might feel safer to stay in bed and manage all those sensations by making our Window of Tolerance smaller and smaller until we can squeeze inside it and feel safe again.  If you haven't heard of the Window of Tolerance, it's worth doing some research on it.  It was one of those lightbulb moments for me about my children and also about how I manage my own life. 

This video might be really helpful: The Window of Tolerance (Beacon House)

Over the years I have noticed that most of the challenging feelings I feel myself stem from feelings of responsibility.  Trying to get help for the children over the past decade and being failed time and time again leaves the question of who is responsible sitting in the middle of the room.  It doesn't help that I am someone whose early life taught her to be a people pleaser and I often joke that I will pick up the bag of responsibility because I can't cope with the awkward pause whilst everyone else is thinking about what to do.  I've learned a lot over the past decade about my own operating system.  Having neuro-diverse children has a way of doing that.  I used to think I'd managed to get through my own childhood relatively mentally stable, and had spent a lot of time working on my own mental health and early life experiences before we adopted the children, but then I learned about more about developmental trauma and took a long, hard, look at myself.  Most parents of children with neurodevelopmental diagnoses eventually have the epiphany that they are actually rather like their children too.  The problem with picking up everyone's problems and taking responsibility is that eventually it becomes hard to put down again.

As time has gone by and professionals have come and gone and helped a bit but not solved the problems I have often felt like I am waiting for Gandalf to arrive on a white horse and an army of salvation.  I just need to look to the east at first light on the fifth day and all will be saved!

The feeling of coordinated help often feels out of reach and almost biblical as a concept.  How I long for one of those one stop shops that the last UK Labour government set up where we could access all the professionals we need under one roof.  Somewhere where I might not feel so alone on a daily basis, balancing all of these emotions for the children.  Online support groups and close friends help a bit and have offered me so much support and opportunity to talk but when the rage erupts and it's just me working out what to do, they feel a long way away.

We have been blessed with a lovely Post-Adoption Social Worker who has tried her very best over the past 4 years to find and fund (via The Adoption Support Fund) the right support for Katie and Pip. It's not been easy for her; funding takes ages to sort and often the packages we've needed cost more than the annual allocation per child and she's had to start looking again.  The children have waited and waited, all the time their challenges becoming more and more difficult for them to manage.  The coveted EHCP's (Education Health Care Plan) are still taking their time to bring the support contained in the pages of their plans but there are now glimmers of hope.

Our lovely Social Worker has found some wonderful professionals for us recently though and I have started to feel something resembling hope that their help might actually do just that...help.  Pip now has a lovely DDP therapist who really seems to understand him (and also me).  Katie has a wonderful Occupational Therapist who can tell how she's feeling by just looking at her.  Considering how adept Katie can be at masking, that is pretty impressive. Pip's school have also found the most wonderful home tutor who is trauma trained and understands PACE.  She is linked to the Virtual School.  Very few other people in my daily life understand PACE and mostly just think I'm letting the children get away with things and pandering to them.  Katie has an LSA coming from her new school who is starting to build up a relationship with her.

This week I have had conversations with Katie's OT, and Pip's tutor and therapist and have been moved to tears by them each saying to me that I can hand over to them some of the responsibility I have been holding on to for the wellbeing of the children.  Just hearing the understanding they have for the children and knowing that they each have a plan to work with them brings so much emotion, it's hard not to cry.  Handing over the responsibility for these parts, after all this time, is hard.  I fear my fingers will cling onto the responsibility like someone who's gone over a cliff and is hanging on with all their might, because I can't quite believe that it might actually be possible for someone to help us.  I have been begging for help for so long that it doesn't seem possible that help might actually come.  Of course the other feeling of anxiety that then jumps right on it is the fear that these professionals might not be able to stay and that it will all come tumbling down again.  I'm trying hard to park that fear in the back of my brain in the folder marked "worry about it if it actually happens".  I was already feeling panic today as to whether Pip's tutor would be able to stay with us if he moved onto an EOTAS (Education Other Than At School) package.  There would be an irony that he may have to stay on school roll for the time being in order to keep this tutor when I've been trying so hard to get him off roll and onto an EOTAS package.  Life is nothing but ironic at times it seems.

Anxiety will remain a lodger here for a very long time, if not forever.  It ebbs and flows and changes shape as we navigate our way through the various dramas, puberty, school, natural wiring.  Developmental trauma tends to stick around for a lifetime.  Both of the children were exposed to huge emotions and various substances in the womb and it's likely that their brains have been hard wired to overly respond to stress.  That makes me incredibly sad.  We sit knee deep in fight/flight and freeze/collapse and, for the foreseeable future, I will need to find ways to manage how I feel as I help the children manage those emotions and reactions.  The professionals come but they go home again and it is just us left holding the pieces together.  It does feel at the moment though that there might be some glue on offer.  Maybe it's golden glue like the Japanese use in Kintsugi.  The art of repairing pottery with golden glue so that you can see the repair, yet also make it more beautiful at the same time.