So, who’s the expert here?

Dr Martha will see you now ….

What makes an expert? I suppose we’re always led to believe that the people with the most expertise are the ones who are the most learned about a certain thing; those with the highest qualifications. Years of study and accumulated knowledge must mean they know everything there is to know about their field, right? Well, I’ve been giving this a lot of thought lately and I’ve decided that’s bullshit.

Think about it; when did you learn the most about something you were interested in? Was it at school in the classroom? At college or university? During a training course or evening class? Yeah you probably learned all the basics, soaked up some new information, but how deeply did that actually sink in? You might’ve been able to start putting what you learned into practise or regurgitating your fresh knowledge to others and sound quite impressive, but how meaningful was that really?

I’ll bet that the REAL learning, the significant learning, the bit where you really began to understand what something meant, how important it was and how it related to other things, was when you actually started DOING it; when you put it into practise, at work, at home, or in your personal life. Am I right?

It’s like learning to drive isn’t it? Anyone who’s learned to drive knows that you don’t really start learning until you’ve passed your test and you’re out there on your own, in full control of a vehicle, on a road, with no-one telling you what to do, or slamming on the extra set of brakes when you don’t notice that hazard in the road.

I remember when I was starting out in my career and the company I was working for at the time wanted to push me in the direction of a sales role. I was young and inexperienced at the time but they had the confidence in me to do it. I, on the other hand, was terrified. Firstly, I’d never had any ambitions to be a ‘salesperson’, and secondly every potential client I came across seemed to be much older, more experienced and more articulate than me. I really didn’t want to do it and couldn’t get my head around how I’d be able to convince these people I knew anything they didn’t.

When I expressed these concerns to my line manager, she pointed out to me that no-one in the room of any meeting I attended, knew more about what I was talking about, than me. None of those people had the passion or first-hand experience of my work that I did. The belief. The results. The evidence. And then it dawned on me; I was actually an expert. I may have had little to no experience in their lines of work or industries; but I didn’t need to. All I needed to relay to them, was everything I DID know and had experience in. Yes! Once that penny dropped I became really good at my job because I had confidence. I knew something they didn’t because I’d learned it, but more importantly, I’d lived it, seen it and breathed it for a long time. I understood it inside and out.

Doing something over and over again is what makes you an expert. Through practical, hands-on, lived experience. By literally doing things, all the time, you learn more about them. When things aren’t working, you try new ways. You experiment. You may be inspired to find out more proactively and apply your experiences to that new knowledge, in a perfectly blended cocktail of ‘expertise’.

You see, I thought it might be useful to share a bit about my experience of navigating our way through ‘the system’. By ‘the system’, I mean the professional touchpoints throughout Martha’s life, whom we’ve had to approach for diagnosis’, education, health matters and general guidance and support.

Everyone’s experiences are different of course. They can differ vastly depending on where you live and the services available to you in your area, the individual personnel you come across along the way, or even down to the age and gender of your child. And of course, all our children are so very different too, so there absolutely should be flexibility and inevitable differences in our journeys. Children’s needs are different and parent’s needs are too …

Overall, my personal experience has been disjointed and inconsistent to say the least. There has never been a through-line of support. By this, I mean there’s been no obvious journey. No clear direction. You might expect, that once you have a referral for a diagnosis (or anything needs-related) or even after a diagnosis has been received for example, that there’d be a clear pathway of progression to follow. (i.e. This action would lead to that, at which point you’re passed on to the next appropriate service or professional and so on). And even once everything you need is in place, that there’d be regular monitoring of the child over the course of their life? This is not always so… Our experience has been predominantly parent-led (i.e. instigated by me).

Other parents I’ve spoken with and become friends with, have often been on very different journeys and have very different experiences so I certainly don’t speak on behalf of everyone. However, if there’s one thing I have learned, it’s that it’s often a game of ‘he who shouts loudest’ and sometimes you have to stamp your feet and scream at the top of your voice to be heard. Sometimes repeatedly. “If at first you don’t succeed” and all that …

Along the way, we’ve been turned down for referrals, diagnosis’, placements, opportunities and funding. We’ve been offered inappropriate or unsuitable support. We’ve sometimes been ‘ok’ for a while and then found ourselves in a difficult place again, asking for help, at which point, the cyclical journey begins once more.

Instinctively, I know when something isn’t ‘right’. I know when I’ve reached my own limitations or when I need some help or guidance for Martha. I’ve often accepted what a professional has told me, because I understand that they are ‘best placed’ to make a judgement, in a ‘position of authority’ or simply know something I cannot (expert?), and therefore have often (albeit reluctantly) accepted the refusal, rejection or ill-fitting solution.

There’s a certain amount of naivety that comes with not believing you are an ‘expert’ in something that results in you having to put your trust in others and let them take the lead – like taking your car to the garage to be fixed. How do you know what they’re telling you is true? Do you really need to spend £300? You’re not an expert … so you put your faith in the mechanic to do right by you. Trust.

I’m going to be really honest with you here and perhaps a little controversial (what’s new? I hear you shout!) but I struggle with how ‘the system’ responds to different types of people. Let me explain what I mean. In my case, for example, I feel that I’m a reasonably intelligent (no comments please!), strong (in the most part), determined, hard-working individual with a good job and a supportive partner. I’m relatively articulate and have a decent, clean and tidy house (most of the time!). On the surface of it, my kids have everything they need. However, that DOES NOT mean that I am coping any better than the next person.

In fact, honestly, in the most part, I feel that having all those things only creates additional pressure. In order to maintain them, I have to work REALLY hard. I have to spend A LOT of my spare time working – either around the home or for my job. I have more appointments in my diary, more deadlines to keep. More washing and shopping to do and all in far LESS TIME than someone who doesn’t work, for example. I have become an ‘expert’ in juggling ‘life’ and mostly being successful at it; but I don’t feel this always goes in our favour where getting help for Martha is concerned.

A friend and fellow SEN (Special Educational Needs) parent recently said to me that she jokes to friends and family saying that she has two jobs; one as a physiotherapist and the other as her child’s caseworker (!). You’re not kidding. The practical day to day looking after of a child with demanding additional needs is a full time job alone, the administrative side of that is another (there is oodles of extra paperwork, additional meetings and procedures involved when you have an SEN child, as well as time spent learning on support groups and forums. I even did a Level 2 Qualification in Understanding Autism in my non-existent spare time, to help me understand more about it!) and then try throwing an actual career into the mix too and you could say we actually have three jobs!

I certainly don’t wish to be a martyr about it; it’s the lifestyle I choose for myself. To some degree, it’s also for my mental health – ‘tidy house, tidy mind’ and all that. (I don’t function very well in a messy environment!) I also need to work for more than just the income it provides. It’s a part of who I am. I need some significance beyond being a mum, and I recognise that about myself. (a whole other blog post perhaps ;0) )

There are two sides to this coin. In some ways I feel the system is far more set up for families in need. Families in worse off situations than ours. That in some circumstances it goes against you when a social worker walks into your house and sees that you appear to have mostly ‘got it together’, you have everything you need and that, in that moment, your child appears calm and happy. What’s the problem?

On the other hand, I do worry about those people who are trying to navigate the system and who are not well-educated, who are not very articulate, who have low self-esteem and lack confidence; who have no support network, no job, no money, no partner, or are in abusive relationships etc. How the hell do those people navigate the system and cope? Perhaps they don’t.

We both have wonderful families and a great support network of friends but what we don’t have is any physical family support on our doorstep. We don’t have family we spend time with on a regular basis or babysitters on tap; Mum’s shoulder to cry on (phone calls are just not the same) or just somewhere to go when you can’t be alone with it anymore. Who do you go to when you’re on the floor?

I have recently emerged from a very dark (and luckily quite short-lived) period of time. A few weeks ago, Martha went through a very difficult period in regards her behaviour. When this happens, (and it often comes in waves) Martha’s behaviour becomes progressively more erratic and physical. She becomes aggressive and violent and any transitions become incredibly challenging

To paint a picture, I had a week-long adverse reaction to my first Covid vaccination which included flu-like symptoms, aches, pains, headaches, lethargy, nausea, diarrhoea, foggy-headedness. I (typically) got my period the day after and a friendly, cheeky little accompaniment of hemorrhoids for fun (yeah – I’m bringing sexy back!).

I’d arranged my jab for a Friday morning before a weekend when the girls were with their Dad as a ‘precautionary’ measure, not really expecting to feel all that bad. Ha haaaaaaaaaa! How wrong could I be? And thank the lucky stars I did!

Martha had already had a tricky week with an ongoing irritating skin rash, which made getting dressed even more challenging than usual. She’s already very sensory when it comes to putting on clothes and doesn’t like it at the best of times (she’s happiest hanging out naked as I’ve previously referenced!) but this rash meant that clothes had become her arch enemy! To add to this we were also going through a very difficult period with our freshly baked teen (which I’ve promised not to get into in my blogs!).

When we arrived to collect Martha from her Dad’s on Sunday afternoon, Martha seemed relaxed. She was pleased to see us and happy to be going home, however, after a few minutes in the van (Karl was driving), all hell broke loose. Martha decided she was absolutely not ready to go home to bed. She removed her seatbelt and launched forward attacking Elke (freshly baked teen) and pulling her hair. She shouted and swore, causing dangerous disruption to the journey. I was still feeling very unwell and was aching from head to foot but had to physically restrain Martha alone in the back until Karl could get us to a safe place.

Long story short, a journey which should’ve taken us 10 minutes, took over two hours with a huge crisis meltdown from Martha and numerous physical restraints. If I’d felt ill before, I certainly did now. The muscles throughout my body had been tested to the limit and I ached more than ever.

The week that followed was hellish with the same behaviours at the beginning and ends of each day, each transition to school resulting in sometimes 2 hrs of meltdowns, attacks, physical restraint or dangerous behaviours. I had my hair pulled, boots thrown at my head, doors slammed on my fingers. You name it!

Meanwhile my health deteriorated. I was having anxiety attacks resulting in little or no sleep. I continued to experience ill side effects of the vaccine and ended up in crisis talks with my GP over whether I needed anxiety and anti-depressant medication. I also made a crisis call to my CAHMS keyworker to let her know that as a family, we were at breaking point and I wasn’t sure if I could cope much longer.

I’d hit another of those ‘crisis’ points that we do every so often (about once or twice a year maybe?) and it really worried me. What if I became too ill to look after Martha? What if I literally wasn’t strong enough to keep her from harming herself, her sister or even me? I know when she was having a full meltdown in the van that I wasn’t strong enough on my own to keep her from launching at Elke, or getting herself out of the door and into the road. These moments are a frightening reminder of how tough things can become and what the future may bring if something doesn’t change. Things got so bad that I actually ended up with Shingles!!! (often associated with both a weakened immune system and stress).

Luckily we’re already on the journey with the right professionals who can hopefully work with us to address these issues going forward. Martha was recently accepted by our local CAMHS team (The Child & Adolescent Mental Health Services), and they’re working with us to explore and understand more about some of Martha’s specific behaviours and help get to the bottom of any undiagnosed disorders or potential treatments and strategies that may give Martha a better quality of life. To make it absolutely clear, I am massively grateful for this help and support and I hope it gets us a little closer to where we need to be. We’re working with a team of specialists whose expertise in their areas of work can absolutely know and do things we cannot. However, I still regularly remind myself that it’s my job to paint a clear picture of who Martha is for them, to relay her individual challenges and needs, alongside our needs as a family. It is also my job to push at every open door (and sometimes the firmly closed ones!); to challenge things and speak up when something isn’t good enough or doesn’t feel right.

I think overall there has been a lack of joined-up thinking up to this point. The support has generally been inconsistent and never really communicated to me clearly. It’s been a series of different professionals, services and individuals coming in and out of our lives at different points and I’ve never been clear on how (if) that all links together and who, if anyone, is looking at the bigger picture stuff. Until recently, with the involvement of CAHMS, there has been no-one looking in detail at all areas of our life and pushing for answers.

Of course, there will always be a part of us that is naive. We don’t have enough varied experiences for example. We don’t know what support networks are available to us, or even that they exist. We have to be open to suggestion and we can always learn something new. I’m not insinuating that well-trained professionals have nothing to offer, of course I’m not. Far from it and I wouldn’t be here if it weren’t for a number of highly trained, supportive, wonderful professionals who have played a part in Martha’s life. Skilled doctors, teachers, therapists, psychologists and some wonderfully experienced individuals… the list goes on. They are, of course, Experts.

But what they are not, is the expert of my child. They often haven’t met my child before and don’t know everything there is to know about her. That can only be learned by listening to those who know her well and by spending time with her, observing and communicating. And they will never know everything because they are not there in the middle of the night when Martha gets up for the third time, or first thing in the morning when she refuses to get dressed and gets herself in such a tizzy about it that she escalates into full crisis-mode, hurting herself and others, unable to process the enormity of the task ahead. When she throws the third full cup of juice across the room or when she doesn’t wipe her bottom properly and ends up with an infection. To witness that look in her eyes as she’s about to do something she’s unable to control. Because I’ve seen it many times before I’ve begun to recognise what that look means – if I’m lucky enough to spot it in time (!). To see the realisation of what she’s done sink in and watch remorse take over. I’ve learned more from Martha in the last 10 years than I could possibly scribe but I’m still learning too!

As parents, we may not know everything there is to know about our child’s particular need or diagnosis but we are experienced in dealing with our children day in, day out. So, I’ll tell you who the expert is when it comes to my child. It is me. I am the expert. I can tell you everything there is to know about her. I can tell you exactly how she behaves when a certain thing happens. I can tell you that what you’re about to try is not going to work because I’ve tried it 100 times before. I can tell you that you’re wrong when you think this particular action is behavioural and I can explain to you in finite detail why this particular support would make a world of difference to our lives.

I am the expert of my child. Her number one supporter and advocate. Which means I will fight to the bitter end if necessary, to get her what she needs and help make her life a happy one. And my advice? You are the experts of yours too! Don’t ever let anyone tell you or make you feel otherwise.

Published by lindsaylou35

I’m a 40yr old mum of two girls, one with Autism. I’m divorced but in a long-term relationship with Karl. I run two completely different businesses with two completely different partners @collingwoodlearning and @rooksandroses and have recently been recognised by the Yorkshire Business Insider as one of the region’s top business leaders and entrepreneurs under the age of 42 (just!). Having completely built a new life for myself over the last few years, I want to share some of my life experiences and insights with others as a way of connecting and building a community of like-minded people. I’m hard-working, passionate about communication and enjoy the simple things in life. Thanks for reading my blog. If there’s ever anything you want to hear more about, please do ask. I know I won’t always cover off everything so please ask if you would like me to expand on anything. These are simply my own experiences, thoughts and opinions and I’m open to discussion around anything. I’m certainly not always right! Big love Lindsay

2 thoughts on “So, who’s the expert here?

  1. Hi,
    I totally agree with everything here. I had a long chat with Karl at Utsf at the weekend and explained that I teach positive behaviour support and I work in our local Learning Disability team.
    I regularly say to the people I teach (families and support workers usually) that as professionals we may be the experts in behaviour, or speech therapy, or OT, but we aren’t the experts in the person, that’s down to families and support workers. We need to work with families to get the best results.
    Unfortunately not every professionals I’ve met sees things the way we do on our team, but we keep fighting and advocating for that joint working.

    I also massively worry about the families who don’t have the education, or confidence, or sometimes just the energy to ask for help, because you can’t ask for help that you don’t realise exists.

    Good luck and feel free to give me a shout if you’ve any questions after the brief PBS talk I have Karl. 😂

    1. Ah thanks Celeste. And thanks for taking the time to read and respond. Karl told me about your chat which he found really useful and enlightening. You’re right about not being able to ask for help you don’t know exists! There’s a distinct gap in the system in how it reaches out and communicates with those that may need to use it.

      Thanks for the offer to shout out – always good to have a team of people to call on if need be. Thanks again and take care!

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