Parenting Under a Microscope
I've made the observation several times over the past few weeks that my life feels like I'm parenting under a microscope. In fact I've even likened it to The Truman Show as well, except I'm at the part of the story where Truman knows that he's being watched and judged 24/7.
When you have a child that has complex difficulties parenting is hard. Parenting is hard enough at the best of times and pretty much all parents would be able to describe times when they've felt angry, snapped, said things they don’t mean or reacted in a way that they later felt unhappy about. For most people they might just comment to their friends that the kids are winding them up and their friends will nod sympathetically. They might shout, feel guilty for a while and reflect to be more patient but that’s as far as it goes. Once you fall under a certain radar though, every single move seems to be noted, judged, commented upon and any minor slip up reported.
We've been going through a tough patch over the last few years. Divorce and its build up, the teen years, various diagnoses, a house move, a pandemic, being out of school, adoption and a sexual assault. It’s quite a list. It’s not a list I recite very often because it can feel overwhelming. We’re still here though and still trying to get through it all.
I'm very open and honest about the challenges we have as a family. I do sometimes wonder if being open is to my disadvantage but I equally question how people can offer support if I don't offer openness and honesty. I would say that I'm open about our challenges but not always as open about how they affect me, other than to say I'm tired. Over the years I think I've processed most of my emotions through this blog because it gives me a chance to really lean into what's happening, how I feel about it and what I think I need to do about it. The thing is though I'm just mum. My children have challenges that I am not able to heal. I can offer love, as much continuity as I can, support, understanding, empathy, the willingness to learn, and as much life education as I can offer. I can go on parenting courses; understand trauma; be a punching bag; absorb emotional and physical pain; and try to remain calm and therapeutic despite being subjected to behaviours that I'm not really equipped to manage, whilst simultaneously managing the impact that all those things and the children’s reactions is having on myself. I am not their school teacher nor the sort of therapist they need to help them through the difficulties they have. The problem we have is their difficulties firstly interfere with their ability to attend school, so that puts us on the education radar; secondly their emotional dysregulation often puts us on the radar of children's services when they do and say things that are concerning and occasionally the police; and also understanding consequences which can lead to risky behaviours which also brings us under the scrutiny of children's services. This past year I have looked at my life and wondered how on earth I am now living under so much scrutiny and how I can parent and live life wholeheartedly with my life under a microscope. One thing I do know is that I no longer feel like I can ever relax and I often wonder if I am enough. I'm just one person swimming in a sea of relentless emotions and challenges and I forgot to wear my goggles.
A personal element I've been observing over this period is the emotions that I have in response to repeated referrals. I was brought up with the adage of "no smoke without fire" so I am the first to look at myself and wonder what I can change or adapt and also what I'm bringing to the parenting table in terms of my own life experiences and the impact life has had on me over the years. I frequently wonder what I could do better. I find it hard though. I’m exhausted from over a decade of fighting with various parts of a system that isn’t fit for purpose and from absorbing the emotional needs of the people around me. I have developed chronic fatigue syndrome and fibromyalgia which were triggered by a virus but I suspect are being heavily impacted by emotional stress.
As a person I'd say I'm quite liberal. I am very spiritual and believe in personal autonomy wherever possible. I believe in the goodness of people. I’m generally optimistic and hopeful and try and find the positivity and learning wherever I can. I do believe boundaries are important and the older I get, and the more self healing I do, the more I really understand how important they are but am aware that my kindness and empathy can, at times, mean my boundaries can be a little blurred. I make allowances for people and services when I know they are struggling but sometimes optimism feels like I’m lying to myself and I try to be honest. I do try and extend kindness and understanding wherever I can. You will rarely hear me say something horrible about someone because I know we can all not be the best version of ourselves under pressure or circumstances.
Children with neurodiversity can struggle with the nuances of PACE. Equally therapeutic parenting can sometimes not offer the learning outcomes that children with FASD need. Add in developmental trauma too and you’re scratching your head. How do you manage behaviour without causing a shame response and equally manage to get the natural learning/consequence to happen close enough to the situation so they can link the two in their mind. The adage of “strike whilst the iron is cold” from NVR is one I aspire to but doesn’t always work for someone with FASD who generally struggles to link cause and effect or take responsibility or their actions. Each situation is different. Ambiguity is a bit of a challenge for me too but this is mind blowing parenting territory at times, especially if I get it wrong then I get the brunt of the anger, frustration and everything else that accompanies that in full storm. In some moments Katie can present in a very typical autistic way with behaviour linked to sensory overwhelm but the PDA element of her diagnosis can mean anxiety drives so many of her reactions and boundaries feel like an allusive butterfly, flapping on the wind, just out of reach. Because Katie's brain struggles to process consequences and lateral thinking she becomes at risk when on social media or around similar young people. Trying to balance her having access to the things other teens her age have with the risks they pose to her, alongside the physical risk to myself when I impose tight boundaries around the apps is an issue that has brought us a whole heap of issues to deal with. At this point in time I’d quite happily ban Snapchat and TikTok and feel neither app is good for the mental health of our young people. As a result we have ended up with some very silly decisions being made that have brought referrals to children's services and the police and various calls where I've had to explain my parenting decisions and basically justify how I'm safeguarding her.
Pip suffers from acute anxiety and also has a very high shame response. He can become quite physical when he's dysregulated. Dysregulated behaviour is a situation we often play out in full view at school or the shops. Pip might refuse to get out of the car, hide in the footwell of the car, hide under the car, run away and on occasions become physical with me. I have learned how to help him in those moments but when we do this in front of an audience we both find it really hard. I never know how to respond when people watch these moments and then say to me afterwards “oh you’re so patient”. Are they judging, admiring, noting that they wouldn’t put up with such behaviour? Mostly I can go into myself these days and blank out the world around us to focus on just us but there are times when I feel the shame and judgement well up inside and I can hear the mental scripts start playing about how rubbish I am as a parent and how everyone is judging me for not being able to get my child to go into school. Every time something goes wrong it’s the same people from school who remark on my patience who refer me to children’s services. I really think children’s services must have the wrong impression of me by now. All these referrals build up a picture on a case file that doesn't really represent who I am, my life ethos, what I’m trying to achieve or who my children are. I want to scream to the world “I’m a nice person for heavens sake! I’m just trying to parent in a minefield”. There might be an expletive in there in all honesty though.
I have to continually try and manage all this myself and deal with these referrals and show that I’m not some horribly abusive parent (which I’m not by the way in case you're wondering). I may not have responded well the first time I was spat at in the face or kicked in the stomach, but who does? There may have been a raised voice or a defensive response but I learn quickly. I rarely even raise my voice these days, yet there I am in full view of the world, being judged left, right and centre whilst I’m trying very hard to publicly manage behaviours most parents don’t even dare dream about. Like I said it’s The Truman Show. The way that he greets everyone each morning is how I feel I am now when dealing with education and other services. It’s exhausting.
In my darker moments I wonder who knows what's been said in the schools and what judgements they are making. Not that I can do anything about that really. What makes me really angry is they can all take the time to fill out these lengthy referrals but nobody really offers suitable support for either of my children. It's all deflected back to me constantly and I'm left picking up the pieces of the damage this does to my relationship with my children as well as with the outside world. I have now said to every single Social Worker who has contacted me that if CAMHS, Children's Services, Education and even our Adoption Support were doing their jobs properly then we most likely wouldn't be having these conversations. My children are left with no support other than me, they aren't in school full-time because their needs are so complex, and yet it feels like they all point the finger at me. The old saying goes if you point your finger at someone then look at the three fingers pointing back at you springs to mind.
Despite the lack of support Katie is in a happier place currently. I use the word “currently” a lot to reflect that life is in continual flux and we never know when one phase will end and another start. Right now she’s more chatty and happier and even being a bit more relaxed with me which is a joy for me. She finally has the offer of a school place for September and funding has been approved for this by County SEN. She has the sort of boyfriend that a mother would want her to have (although I'd prefer her to be a few years older after everything that has happened recently) and a really lovely best friend too. Our relationship is going through a slightly better phase. I think she occasionally sees how much I support her. My Post Adoption Social Worker (who is leaving us after nearly 4 years) said we were where we are because of me fighting constantly for support. I’ll take that compliment because it’s true.
Right now we are finally making some progress. Pip and I start DDP this week. Pip's 1:1 has now started in school and the extra support might help him stay longer in school. I'm not sure mainstream is right for him long term but he has friends in the school and he wants to stay currently. This reality was backed up by the Psychiatrist from CAMHS this week who confirmed that Pip doesn't have ADHD but it seems to be more a combination of developmental trauma, severe dyslexia, sensory processing issues, most likely some exposure to substances in the womb and school based anxiety. If you met Pip you'd think he does have ADHD because he's so bouncy and busy so in some ways this is a more complex diagnosis because we can't trial any medication to help him feel calmer. It will all be support based and trying to help him manage his anxiety and attachment. The psychiatrist feels he would be better matched to a school where these challenges were better understood and his school day will be less stressful. We need to see if the current support package in mainstream will work before we look at other options. SEN have given school some advice around making his curriculum more fun and enticing and less learning focussed. I had a very productive meeting with his school this week around measures they can put in place to make his day feel easier. Now he's going to school in the mornings he is more focussed and has had less time to derail before we arrive. He's gone into school for his hour and 3/4 very happily for the past 2 days post half-term which has surprised everyone. I'm joking it's his magical new shoes. I think about 5 people have commented on how cheerful he has been over the past few days which is lovely but brings added pressure too because I have learned to take life a day at a time and I often think people assume that a few positive days means we've cracked it with him. Thankfully his new SENCO and his old LSA are finally starting to understand that it really can change so much from day to day. His new LSA has started probably expecting a very chaotic young man but Pip has been cheerful and interested in joining in (of course this might be masking but he's commented that he feels ok this week so I'm going to take it as that). Interestingly he told both me and his LSA that the classroom wasn't feeling as loud this week which maybe highights the links between stress and sensory processing issues. There are some conversations I will write about another time in order to give them the reflection they deserve.
One thing I’d note as an adopter is that after the adoption order is granted everyone seems to disappear, unless you already have a support package in place. In my experience, 12 years since we first adopted Katie, I feel that every single child who is adopted should have a support package in place irrespective of whether the needs are evident. Therapeutic support should be in place from the outset. I know so many adopters who struggle. The Adoption Support Fund often don’t fund the things we really need to help our children like medical assessments, diagnoses and proper mental health support when we ask for it, so we are trying to make the therapies fit that are accepted. Our kids have been through an experience that most of us cannot even fathom. Often they have neurodevelopmental challenges that are undiagnosed and attachment complexities are the norm, not the exception. We read books, we learn parenting strategies, we undo all the parenting techniques we have learned in order to be the most therapeutic we can possibly be but they need more than we can give them. We fight the education system. We beg for mental health support. We try and help with developmental trauma, eating disorders, attachment disorders, neurodiversity and behavioural reactions that most people wouldn’t have a clue how to manage. They deserve better. They deserve society to offer them the best that can be offered because they live their lives with so many emotions and challenges that most people don’t understand and often only judge them for. I wonder when, and if, we are going to get it right for our children?
And as for me?
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