Surviving the Schoolgates

Before I realised just how difficult it was for me to make friends, I imagined that once I had children and once they started school, I’d have a steady supply of them in the form of the parents of my children’s friends. It has taken four years but I have finally admitted to myself that that’s not going to happen. And I’m reminded of that each and every day, as I wait at the school gates to pick my kids up after school. 

I can hear the chatter as I approach, and I make my way to my usual spot. Everywhere around me are other parents, mostly moms but a few dads and grandparents scattered around. They hang around in twos and threes. I hear laughter and ‘we must have coffees’ and play date arrangements being made. I stare straight ahead. 

I try to avoid eye contact, but sometimes I fail, as one or two moms catch my eye and say hi. I usually mumble a hi back, but often all I can manage is a nod and some attempt at a smile. Once or twice a week, one of the friendlier souls will attempt to engage me further. I try my best. We talk about the weather, the weekend, how our kids are ‘getting on’ in school. But after just a few minutes, I notice their gaze drifting off, and eventually their feet follow as they find someone they’d prefer to talk to. I usually don’t mind, but sometimes I’m in the middle of a sentence when this happens and my words are left hanging. 

It used to be worse. When the kids were younger, the protocol was for the parents to line up outside the classroom to collect them. So I was in closer proximity to the other parents and it was harder to avoid their eye. A line of chirpy smiling parents all turning to look when I arrived. My phone has been a godsend in those circumstances. But sometimes I’d forget to charge my phone before leaving the house and the battery would die and I’d be caught out. So, again, the scripted small talk would come out. But I never got the hang of the rhythm and timing of it, so there were always awkward silences. The worst was when I would be standing at the end of the line, and another mom would come after me and stand beside me. They’d spot their friend on my other side, and the two would start to chat straight through me. As if I wasn’t there. I never knew what to do in that situation. Thank god I’m now allowed to wait outside. 

Another thing that has made my life so much easier is getting a dog. Our dog is the friendliest, most sociable dog I’ve ever met. He’s still a bit of a puppy, and is incredibly cute. All the kids at the school adore him, and it’s like a petting zoo when I am waiting for my kids. He’s a wonderful distraction, and I’ve learnt a whole pile of new scripts involving dog small talk. He takes all the attention off me. 

But even then, waiting by the school gates is one of the most stressful parts of my day. And there’s nothing nicer than when I’m home again. 
  

The Gatekeepers of Diagnosis

You may have noticed that I’ve an official diagnosis of Hypermobility Ehlers Danlos Syndrome but ‘only’ self-diagnosis for ARFID and autism. And I feel I need to explain that. 

Ever since I can remember, I’ve know I was different. I used to do all those ‘personality tests’ and quizes in magazines. I used to pore over horoscopes and whatnot, in an attempt to understand myself. So I can say, I have thought a lot over the years about what sets me apart from others. Introspection is an amusing hobby. 

I was a weak and sickly child. I’ve always had low energy levels. When I was around twenty, I started having a tremendous amount of pain internally. Various scans and X-Ray’s showed nothing, though my ovaries were ‘too deep’ to be seen and so overlooked. My GP proclaimed I had an ‘irritable bladder’ and gave me pills that did nothing. He never referred me to any specialist. That decision ended up costing me an ovary. 

And that was my first experience of The Gatekeepers. Here in Ireland, to be seen by a specialist, you normally need a referral from your GP, or General Practitioner. They are supposed to do an initial assessment, and then pass you along to someone who knows more than they do. Because they can’t know everything. But, often, they don’t do that because they make judgements and decisions on things they have no expertise in. And, as we shall see, they often don’t refer patients for much more sinister reasons. 

My next experience of a Gatekeeper was when I was pregnant for the first time. I could barely walk as my pelvic joints were too loose, and I was in a lot of pain. I asked my obstetrician to refer me to a pregnancy physiotherapist. He refused, saying it was just a normal part of being pregnant and I’d have to just get used to it. I was too shocked to say anything. 

When my daughter was two, so nearly four years later, I realised the pain I was experiencing couldn’t be from being pregnant anymore. My new GP was great, she had no problem referring me to an orthopaedic surgeon and a maxillo-facial specialist. When those didn’t produce any results (aside from a vague diagnosis of ‘myofascial syndrome’,and being  told I was incredibly flexible for my age) I knew I could rely on her to keep on with the search. Except, she then went and got married and moved to a different city. 

My next Gatekeeper GP claimed to be an expert on rheumatic matters. She referred me to a rheumatologist. Who took a few minutes to diagnose me with fibromyalgia. He claimed to be an expert also on osteoporosis so I asked for a referral for a DEXA scan, as I was worried about my bones due to being underweight. He told me I was ‘too young’ for such concerns, and that he wished all his patients were as thin as I was as it made my joints easier to examine. He then told me there was nothing he could do for my fibromyalgia and he didn’t need to see me again. This diagnosis did not sit well with me, as it was my joints and not my muscles that ached, and it was predominantly on my left side, whereas fibro usually consists of bilateral pain. 

So, I did some research and discovered that I was very Hypermobile, as were my two kids. I went back to my Gatekeeper, and asked whether she could refer me to be checked for Hypermobility Syndrome. That was when she laughed in my face. And told me that EDS was ‘as rare as hen’s teeth’ which meant I couldn’t have it. Luckily, I found a Rheumatologist who accepted self-referrals and I travelled across the country to see him. He diagnosed me and my son with EDS and said he was sure my daughter had it but couldn’t diagnose her formally as she was too young. As you can imagine, I  informed my GP of my diagnosis just before firing her. (She had also refused to refer my son for ASD assessment, saying he was too young to sit through it, even though he was four, which is the average age for assessment. She suggested I take parenting classes run by the Catholic diocese instead)

And so, I now have a new GP Gatekeeper. She has referred the kids to Paediatricians, me to a Cardiologist, and all three of us to Genetics. She never has a problem referring us anywhere. Though she has plenty to say on how she is put under pressure not to refer patients. Because of cutbacks and also a desire to make waiting lists appear shorter. You cannot add to the waiting list if you’re never put on it in the first place. She pushes back against this and refers her patients anyway.  You can see she really cares about them. 

And yet…

EDS, fibro, POTS, neuropathy. These are all diagnosed by medical practitioners. 

Eating Disorders and Autism are diagnosed by mental health practitioners. 

My new GP is a lovely lady. She lives and works around the corner from me. Not even a five minute walk. Our children go to the same school. Our sons were in the same class last year. 

And so I am embarrassed and ashamed to admit to her that I might have an eating disorder. Or that I’m certain I’m autistic. There is an internal stigma against mental health issues there that I can’t seem to shake off. Especially seeing as to all intents and purposes, I appear ‘normal’. I’m not very thin, and don’t fear being fat, and as ARFID is such a ‘new’ eating disorder, even if I managed to ask for a referral, I’m not sure she’d believe me. Or even if she did, I’m not sure who she could refer me to. There are no good Eating Disorder experts in my town. No psychologist specialises in them. 

And as I’m an adult female who has spent a lifetime perfecting the art of ‘passing’ as Neurotypical, I’m not sure she’d believe me if I said I was sure I was autistic. And, again, if she did believe me, I’m not sure who she could refer me to. Most psychologists here only diagnose autism in children. There is a Psychiatrist in Dublin who might diagnose me, and he accepts self-referrals. But he only works privately. I’m actually thinking of bringing my daughter to see him, and can’t afford for him to see us both. Because even for children, getting a referral for public (and free) assessment is nearly impossible if you don’t show ‘obvious’ autistic presentation. And even after referral, the waiting list is nearly two years. 

But I also need to ask myself, even if I do make it past the Gatekeepers, and get a diagnosis, what then? I would not qualify for Inpatient Eating Disorder treatment, as I’m not skeletal enough. Here, they only take you in if you’re at risk of death. Similarly, for Outpatient psychological help, I’d need to be suicidal. I could go privately but at €180 for initial consult and €100 per hour after, I simply can’t afford it. And, like I say, nobody here specialises in eating disorder treatment. 

And for Autism? I’m not sure what treatment, if any, would be offered me. Yes, I’m stressed, yes I’m anxious. But I’ve developed effective coping mechanisms on my own. I’m not eligible for supports or services. So, a lot of hassle and money when really there is no need. 

And so, I’ve decided I’m done banging on gates. I’ll keep doing so for my children. But not for myself. If my GP suggests a referral, like she did for Cardiology, then I’ll take it. But I’m done with seeing specialists who may or may not help me. From now on, I’ll help myself. And diagnose myself. Because I’ve proven I know myself better than anyone else. My mind does not need a Gatekeeper to access it. My introspection can do that by itself. 

  

Counting my steps.

I count my footsteps as I walk home. I always have. I try to keep at an even pace, same number of steps in each section of footpath. Usually four steps per section. One, two, three, four, one, two, three, eight, one, two, three, twelve… 

Counting gets me home. If I count, I don’t feel the rain. If I count, I don’t feel the pain. Each footstep feels like I’m walking on razor blades. So I count. 

Seven hundred and thirty six steps home from the school run. One thousand four hundred odd, home from town. 

 And when it’s all too much, I can urge on one more step. Just one more, then another. You can always take one more step. Nearly there now. 

Others use devices to count for them. They don’t need to count to occupy their minds.  They use their steps to earn bragging rights. 

I can brag too. I made it home one more time. 

[image showing female presenting person, from the waist down, walking along a footpath, with their back to the camera. They are wearing a grey coat and white tights, and flat shoes. They are walking towards the sunset with long shadows behind them.]

  

A Prescription for Rest

One of the hardest things I’ve had to come to grips with since becoming chronically ill is that I need to rest more. Growing up, this was never a problem. My mother, being a writer, understood the value of sitting down and just staring out the window. Her own mother had been puritanically the opposite, in a ‘devil-makes-work-for-idle-hands’ kind of way. And so, as a child, I got to while away the time, reading books and day dreaming. Except for epic forced marches in the Kerry mountains or on the beach, which for some reason were thought by mom to be ‘constitutional’. But, other than that, I perfected the art of doing nothing. My motto was “why stand when you can sit, why sit when you can lie down.” Wise words for a weak, sickly child. 

I don’t know what happened. I suppose I ‘grew up’ and thought I had to act in a more adult way. Maybe it was the guilt of watching my parents work so hard to make do. I didn’t want to feel like a burden. And so I worked hard at the few jobs I could get. I did not want to appear to be a scrounger, a free-loader. I pushed myself until I broke. 

So now, I get to stay at home while my husband works. I cook and I clean and I mind the kids. And I rest.  Not as much as I should, but I try. And yet. And yet… When I hear my husband walking in, I jump up and start tidying. I must appear to be trying, to be in constant motion. I must try to justify an answer to ‘what do you do all day?’. I must not appear lazy.  

To have value in society, we are taught not to be lazy. We are taught we must contribute. Otherwise, we are nothing. 

But when you are chronically ill, there is much to be gained from being chronically lazy. We need to replenish our energy stores just to stay alive. Being lazy but alive is better than the alternative. This is a hard-learnt lesson. 

And so, my prescription for health right now is to rest. Doctor’s orders. And it is so so hard. Adding to the guilt is the fact that a starved brain is a hyperactive brain. Sitting still and being sedentary is so hard. And what, exactly, does being sedentary look like anyway?

My good friend Amazonia wrote this:

Ideally, recovery looks like this. Wake up, eat a long leisurely breakfast while reading a book. Have a nap with your feet up. Have a shower, and then a snack or two. Have another nap. Lunch, while watching TV, feet up – then sleep for an hour. Get up to make a snack, and start washing machine. Have snack, and put washing in drier. Nap for an hour or so. Dinner, while watching a movie. Lie down for an hour, then make hot drink and snack – load dishwasher and start it while milk is heating. Have snack in bed, and fall asleep while reading. 

She was writing in the context of recovering from an Eating Disorder, but I think it applies for any chronic condition. And so, while going through this particularly painful and tiring flare up, I’m using her words to guide me. I can only do the bare minimum, anything else is unnecessary to my survival, and I refuse to feel guilty any longer. 

Because I choose to be lazy, but alive. 

[black writing in a yellow background: why stand when you can sit, why sit when you can lie down?]

  

Book Review: The Real Experts

When I first realised I might be autistic, I decided to seek out and read about the experiences of other autistic people. Trawling through the hundreds of books on the subject, I quickly discovered that the majority of them were written by psychologists, who deemed themselves to be “experts”, or were written by parents of autistic children who weren’t autistic themselves. 

The only books by autistics I could find seemed to be memoirs or autobiographies. And though they seemed interesting, I had neither the time nor the inclination to read them. 

And so I turned to blogs written by autistic people. Shorter, easier to read, and writing on various topics, not just describing their childhoods. And I devoured them all. 

And one day, one of them mentioned this book. I can’t remember who it was that first blogged about it, but I jumped at the chance of buying it the day it was released. 

And there it was. The book I’d been looking for all along. A book of essays written by autistic adults. Each different, each with their unique voice and style of writing. And yet, each unmistakably autistic. A veritable who’s who of the bloggers I’d been following, and a few more besides. 

So, for anyone who either is or suspects they may be autistic. For every parent of an autistic child. For every friend or family member. For every professional who works with autistic people. For every person who may simply be curious about what it’s like to be autistic… Read this book. I promise you it’s worth it. 
The Real Experts is available from Autonomous Press in both hard copy and e-book form. 

For those wishing to order the hard copy from outside the US, you will need to order it from Amazon
[image is of the front cover of The Real Experts]

  

Writing my pain away. 

A cough I picked up over the Christmas holidays turned into a chest infection. After three nights of no sleep due to coughing fits, I went to the doctor and got antibiotics. And just when it was clearing up, I woke up yesterday morning with a migraine. I managed to crawl back into bed when the kids went to school, and fortunately slept it off. Then, just when that was clearing up, my peripheral neuropathy came springing back into my life, having been away for about a month. That familiar itching, burning, tingling and painful feeling in the soles of my feet. And then cue another headache, but this time caused by TMJ and neck issues, just in time for bed. And then in bed, my tummy rumbled, reminding me that when pain comes roaring back into my life, my urge to eat vanishes. It never rains but it pours. 

And so, it’s back to basics. Back to step by step pain and lifestyle management. 

Painkillers, capsaicin cream, ice packs, heat packs. 

Scheduled meals every hour. 

Rest, naps, early nights. 

Netflix. 

And writing. This is a new one for the list. Feet up, heat pack on my neck, snacks by my side, tucked up in bed, writing. I never knew writing could be such a sedative, such a painkiller, such a distraction from my woes. I’m definitely adding it to my arsenal of pain-relief choices. And because I use an iPad and predictive text, I only need one finger to be able to do so. No holding pens awkwardly, no clunky keyboards. I can dim the screen as well. Yet another reason I have for being grateful for technology. 

  

Don’t yuck my yum*

*full credit for this phrase goes to the lovely ladies at Mealtime Hostage. I’m not sure exactly who came up with it, but that’s where I heard it first.

There are no bad foods. Let me repeat that. No. Food. Is. Inherently. Bad.

Actually, that’s not 100% true. There are three scenarios in which a food may be bad.

1. It is laced with poison such as arsenic. By an assassin. You won’t know about it till it’s too late.

2. It is contaminated with E. coli or some other pathogen. So go ahead and throw out that bowl of mould and slime at the back of your fridge.

3. You are allergic to it. And I mean, a medically proven allergy such as peanut or coeliac. Not some vague notion suggested to you by a naturopath.

That’s it.

In all other situations, food is food.

People get too hung up on making moral assumptions based on food choices.

Stop doing that.

That girl you see gulping down that double cheeseburger when you think she could gain by losing some weight? She could be trying to recover from an eating disorder. You don’t need to be thin to have an Eating Disorder. And if you call her out on it, she may suffer a fatal relapse.

That boy eating a bowl of icecream instead of his lunch, which clearly means he’s a spoilt brat? Maybe he has Selective Eating Disorder and icecream is one of the few foods he will eat. And if you call him out on it, he may lose the ability to eat even that.

That mother in the supermarket, her trolley filled with cheap hotdogs and packaged food, who is clearly poisoning her kids with toxins? Maybe she and her kids are homeless and need food they can eat that they don’t need to cook. And if you call her out on it, you just add to her shame and guilt.

So, stop it. Stop with the food shaming. Keep your eyes on your own plate.

Don’t yuck my yum!

 

[image is of three balls of chocolate icecream and a wafer roll, covered with lines of chocolate syrup. They are in a white bowl, on a beige canvas tablecloth, next to a dessert spoon.]