Category Archives: Uncategorized

Time to breathe out

It’s the first day of school after the Christmas break.  The anxiety that has been simmering for the last two weeks, for me at least, becomes reality.

When faced with doing something that she doesn’t want to do, Aine can become physically violent.  This is something that she has displayed at various levels over her life.  It started as self-injurious, biting her arm during physio sessions.  We bought bangles and chewy items to prevent the injury but nothing seemed to satisfy her the same as hurting herself.  She would bite the therapist if they weren’t quick enough, but it was mainly herself.  This progressed to head hitting and elbow banging, bending her arm and smashing her elbow hard onto a surface; table, wall, door.  Less often she would bang her head on surfaces and also bend forward into a most envious forward fold yoga pose to bite hard on her knees.

It was easier to dodge when she was little and it was far easier to distract her.  A game made her forget that she was being dressed or being made to take foul-tasting medicine or being made to contort her tight muscles into painful stretches,  As she has grown, she has become more savvy.  “This uniform means school and I don’t want to go there!”  “This spoon means medicine and it tastes like feet!”  And also the realisation that certain behaviours and words push certain buttons in care givers has developed.  If I am failing to respond to a pinch or a scratch, a swift slap around the face gives the eye contact she wants.

With age comes physical growth and therefore strength.  She will break the skin on her arms and her knees are always bruised.  She has a patch of leathery skin on her wrist that no amount of celebrity endorsed moisturiser will soften.  So onto the injuries to care givers; slaps, scratches, pinches, kicks.  The occasional bite and harsh words.  “I hate you!”  “You little bitch!”  It’s hard to hear.   And the blood curdling screams she emits make it sound like we are pulling out teeth, not just trying to brush them.

I read an article recently about domestic abuse inflicted by children.  The title seems ‘off’; we associate domestic abuse with adults in relationships.  But if we were to be literal, it is infact applied correctly .  Still, it doesn’t sit comfortably with me.  A child abusing their parent.  I can’t accept it because the intent isn’t the same.  I read daily about the struggles families are having, how children with mental health issues and neurological disorders displaying violent and challenging behaviour are struggling, without effective external support.  How parents are forced, in extreme cases, to call the police,  having their children arrested, taken to cells or other family members in order to de-escalate the situation; knowing that it will be only a matter of time before the child is home without support and the situation occurs again.  They will forget the incident for the time being, what else can they do?  They love their child and it’s not their fault.  They carry on with the parental remit, love and protect.

I don’t know the answer to their problems any more than I know the answer to our own but I do know that it is a real struggle, on a physical and emotional level and I do know that we shouldn’t keep quiet about it.  It is happening and we shouldn’t be ashamed.  It’s not about discipline or boundaries or respect.  Our children have lost control because their brain is different and they are playing out their worries, fears and anxieties.  Maybe the more we speak up, the more will be done to understand and support families, to help them stay strong and resilient.  I can’t come up with a catchy “hashtag” slogan, that’s not my forte.  My real fear is that in the financial climate we live, this isn’t going to happen anytime soon.

So to my fellow “VCB” families, school is in session, it’s time to breathe out!  Same time, same place tomorrow.

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Complacency and Catastrophising

IMG_7535I never thought I would become complacent about epilepsy. When Aine was first diagnosed I remember the sick, sinking feeling. We knew in our hearts, we were told it was highly possible, but you hope don’t you?

All that said we have become quite used to the seizures and adapted as they have changed over her lifetime. Looking back to the start they were quite innocuous. They could have easily been passed off as something entirely different if we weren’t looking out for them. She used to go blank, gulp and pat things. She would flush in red patches, her lips turn a red wine colour and after about a minute or so she’d be back with us, but very sleepy. Up until she was three, that’s how we knew seizures. Then she had her first tonic clonic and there was no missing that. I remember that I was hysterical. I honestly didn’t know what was happening. I was sleeping on her floor at the time as she’d been restless. At first I thought she was choking. I was looking for her dummy thinking the teat had come off and lodged in her throat. The noise was like choking. An ambulance came really quickly and a very calm and experienced paramedic took over, saw what was happening and administered rescue medicine. I was in shock. Crying. Unable to focus. Shouting and rambling that she was dying.

We got used to it. Well we did in the moment. I would often have a little cry after things had calmed down but we got used to the lead up signs; poor appetite, behaviour more challenging, bad sleep, and we would be waiting for it to happen. She always had an aura. She would stare, hold her ear and say she was poorly for a few moments and then she would go into the seizure. Start the timer, get the rescue meds, grab the phone, wait for seven minutes, give the rescue meds, wait three minutes and if it hadn’t stopped, dial 999. We used to go to hospital every time until a Doctor asked why we called an ambulance, she had rescue meds, we didn’t need to come in. That was a bit shocking, and relieving at the same time. I was cross because this was my baby, the most precious thing I had ever held, and he was dismissive. It’s no big deal. It’s just a seizure, stop wasting NHS dollars. And then the relief; no sitting around in Assessment Units. No waiting for meds or discharge notes. So we learnt to manage ourselves. Very well in fact. And it was better to be at home; seizure ends, sleep it off, everyone comfortable in their safe place.

Then came a new seizure, probably about age seven looking back. This was scary. She screamed. Screamed like there was a lion chasing her. And she twisted around, over and over and over. Wrapped in sheets, or wires when we were in hospital once. And this went on for a long while. Up to ten minutes before we could give rescue medicine. This continued until present day, we still have these episodes. But again we became ‘used’ to them. We knew the pattern and we rolled with it. In fact, whilst the seizures became a little more expressive, the need for rescue medicine became less and less. This is a major improvement because recovery, or the post ictal phase, is so much quicker and Aine doesn’t get the headaches that she used to that would often make her vomit. She reacts badly to vomiting!

And then this last few days, she’s thrown us a curve ball. We’re not sure if it is indeed a seizure; based on what we know and the doctor seeing a video, we are pretty sure it is what is called a ‘non convulsive status seizure’. So she is very vacant, expressionless, able to answer simple questions, but slowly and slurred. Unable to walk or even sit up without support. And sick. And the horrid thing is we can’t give her anything to stop it until it’s confirmed. And to confirm it she needs to have an EEG, be in status seizure when she’s having the EEG, and we have to go to Alder Hey, during office hours, when there is a free slot, meaning the definitive diagnosis is pretty slim.

Yesterday she started to have these symptoms at 1pm and at 10pm she was still displaying them. And I was scared. And whilst she seems a little brighter today, I’m still scared. I’m scared that this isn’t a one off. That this is Aine’s future. Scared about what this means for medication, her schooling, her life. Scared for her siblings and how it will affect them. And scared for me and MrM because it’s so hard seeing your baby in this state.

There’s a motivational quote that does the rounds from time to time. It says ‘so far you’ve survived 100% of your worst days, you’re doing great’ and it’s true. You learn coping mechanisms. So whilst I’m catastrophising now ‘she’ll never go to school again’ ‘I’ll have to give up my job’ ‘we’ll have to get a new wheelchair and a converted car’, I know that epilepsy has made warriors of us all in the McD house, and, as we are forced down the alternative fork in the road ahead of us, we will find our way. We’ve got an excellent track record!

Chaos

It’s how we live. It’s our defining characteristic as a family. Chaos! And I despise it. Even the word makes the little hairs on my neck stand to attention.

I’ve always been pretty organised. I confess that I am a whimsical gadget purchaser, that I am a bit of a hoarder, a trait I am witnessing in the littlest too, but when it came to plans, I was organised. Now, I’m not. Not in the slightest.

I forget birthdays, I forget food in the oven, I forget to do things I’ve promised to do. I’m late for things, or turn up for things at the wrong time or date. I see tasks that I must complete stacking up like planes on a runway and I keep adding and adding.

And the reason, burnout.

I did an online survey. I have caregiver burnout. I need to rest and recover on a daily basis. I need to find time for the things I enjoy, I need to do more physical exercise. I need another couple of hours in the day!

It’s an Americanism. According to webMD.com

Caregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude — from positive and caring to negative and unconcerned.

but I know it’s real. I feel it. Even here in England.

Very recently I had a massive shift in my mental state. I was uplifted and became organised. I was tidy. I was motivating everyone else to be tidy. We were eating properly. I stopped drinking wine. I was sleeping. I felt energised. And that uplifted me more.

Then Aine’s health, and so her behaviour, declined. As that declined, so did my new found status and I plummeted back to chaos.

I am not sleeping properly, I’m tired, restless, tense, sore. I’m not concentrating; I’m making mistakes in my beloved crochet, speed reading pages in my book, half listening to tv programmes. I’m forgetting to do things; packed lunches, children’s reading, chasing civil servants.

A few nights of respite recently, a night out, left me feeling even more exhausted. I let down the scaffolding that’s holding it all together and I felt worse than I did before. (I should like to point out here that I had a really good time and enjoyed spending time with the amazing MrM.)

Moving forward, I’m hoping to get back on track sooner rather than later. I’m hoping to see some changes that see me edge back towards that uplifted state. I’ve done it before so I can do it again, right.

Watch this space ….

I have that village ….

My wise mum had lots of sayings. Some have stuck and my two favourites were ‘pick your battles wisely’ and ‘it takes a village to raise a child’.

I’ve witnessed the latter no more so than this past year.

Let’s start with Aine. 2017 was the year we started regular, structured respite. One night, every week, off she goes with her overnight bag and she sleeps out. She goes straight to school the following morning, meaning I get a night and a day off from the challenging routines. We all do. And she has a lovely night being looked after like a princess!

It wasn’t something that came easy, letting my girl go to someone else’s house to sleep over. I battled with someone else getting her ready for bed, putting her to bed and being there when she woke up. I was scared about not being the person that covered her ears when she had a seizure.

But I recognised the need.

It came as a bit of a shock when we were assessed as needing weekly input. I had to coach myself out of the guilt I felt. Not just the mum guilt, but the guilt of taking social care monies when things weren’t really that bad.

Looking back at this makes me shake my head at my poor deluded self. Things were that bad, for me anyway, I was at breaking point some mornings. Especially now I had a little one starting school …..

So now I had another one to add to the mix. (Just so you know what a super woman I really am I also drive the biggest to school six miles away three days a week.). So yes, the littlest had come of school age. I now had to juggle waiting for the school bus for Aine, getting him and the biggest to school, in an impossible window of time! Enter my friends. Three mornings a week I drop him at friends’ houses to be taken to school along with their own children. And two evenings a week the biggest has to hang behind to give me time to get to school to collect her. I’ve also relied a few times on friends to collect the littlest for me as well. Especially on work/Aine sick days when quite frankly I don’t quite know how I do it, I just know I rely on people to help. And they don’t have to. These aren’t paid people. They just do it to help me out of a sticky situation because they’re kind.

More recently I’ve welcomed new people into my life in the form of more school mums. Due to a recent bout of winter sickness I was unable to attend my son’s fifth birthday party. The first party he’s really been aware of, the first one when he has said who he wants to invite (everyone). I was beyond gutted and seriously contemplated cancelling for fear of giving the whole community Norovirus. Well MrM was having none of it and put his foot down. ‘It’s going ahead if it’s just me and him bouncing on a castle’, he informed me. (Masterful I know)

So it did. I notified all mums in advance that the plague was upon our house and how we would understand if the fear of their child catching it kept them away (special needs mums are always mega cautious about contagious conditions). But they came anyway. And not only that they offered to bring/make food, laid out the food so MrM could focus his attention on Ned and pretty much took charge, judging from the photos of him fooling around with cheesey puffs for tusks! I don’t know these ladies all that well, except for one anyway. But that didn’t stop them. They saved me and MrM an enormous amount of stress. I also had another mum volunteering to pick Aine’s medicine up from the doctors the other day.

I am beyond grateful for all these people in my life and the support that they give us and I hope there is the opportunity for me to payback sometime.

The key thing I’ve learned in 2017, and that I hope you can see too, is that it is ok to let go. It’s ok to let someone pick up the excess. It’s ok that I can’t do everything myself, because it takes a village to raise a child and thankfully, I have that village.

Just call me Mummy

Today I’m contemplating the media titling of a new movement of mothers as ‘slummy mummies’.  The ones who feed their kids ready meals, drink wine, express their annoyance at their kids publicly, share their epic fails and the gather support on social media *places hands on either side of face, opens eyes wide and gasps in mock horror*. 

As mummies we are often given labels. Yummy mummies, pushy mummies, earth mother mummies, you get the point, I won’t labour it!  

So tonight as I serve my children a meal of fish finger butties I consider how I feel about being a ‘slummy mummy’.

I conclude:-

I couldn’t give a rat’s ass!

I have stood and cooked so many meals that get the following responses :-

1. I can see orange! It’s carrots gag gag gag! End of meal. 

2. These aren’t yummy sausages. I want yummy sausages (organic butchers v a well known frankfurter). End of meal. 

3. These are too spicy, I don’t like goujons, just nuggets. End of meal. 

4. There’s butter. I don’t like butter. End of meal!

5. Is it yummy cheese? End of meal. 

6. I wanted pasta. This isn’t pasta. Pasta is curly. This is straight. End of meal. 

7. Is it dairy milk? Yes it is (I lie). Takes one look. Scrunches up face. End of treat!
Catch my drift.
We are stressed enough. We have enough guilt.  We question if we are good enough every day. We need to stop pandering to this crap!  We are just mummies! Not slummy, not earth, not whatever. We are just mummies. If we choose to feed our children ‘beige’ food as it has been described, we are feeding our child. Winner, yes?

I actually choose to positively parent.  (Pats on the back not necessary). It is my hope that it will help my children to learn to make good decisions. But it takes a hell of a lot of patience. Sometimes I epicly fail and yell ‘I don’t care just do what I ask’. Other times I patiently explain why it’s important to clean the paint off the wall and why we shouldn’t lick rain off of people’s cars!

I encourage my youngest to engage in imaginative play. It takes a hell of a lot of time to pick up after an imaganitive four year old who has presently removed every cushion off of the sofa’s to build a mountain that we can climb to ‘get some exercise’. His arms are too tired to help, after all of the exercise. I could have been making a my own fish goujons whilst I was stage diving into the cushions. However, I took the cheats option of The Captains favourite whilst jumping into the soft cushions and laughing with my littlest. And I’ll do it tomorrow, and the next day, and the next. 

And in ten minutes time I’ll be counting down to gin o’clock because I know I have the trauma of bedtime looming!
My kids at fed, clean, usually happy, sociable, considerate human beings. In my book, I’m doing something right!  Not slummy, yummy, earth or pushy. Just mummy!!

Tomorrow’s another day…..

We’ve all heard it, most of us have said it. As I’m lying on the littlest one’s floor, waiting for him to fall asleep, I tell myself this very same thing. Tomorrow’s another day!

It’s not been a good day today. By 11 amI wanted to back pedal and start the day again. It started early (MrM recalls 4.20 am) with a little tap from Aine and a few moments later a shout from the littlest of ‘is it morning time’ and it’s literally been downhill from there. 
As I’m lying listening to the littlest whispering himself to sleep, I think about the statement, a tad too deeply one might conclude. Tomorrow’s another day. It implies that as today ends, so does its woes, and tomorrow is a fresh start. As my 6.30 alarm sounds, I will leap out of bed in my tighty whiteys, with a spring in my step and a song in my heart, riffing American Dad’s Stan Smith, ready to take on any challenge that should come my way. Not a pretty thought and not in the slightest bit likely. 
Listen carefully, here comes the reality…..
Tomorrow I will wake to no bananas in my fruit bowl; a consequence of todays minor emotional meltdown in our local supermarket resulting in trolley abandonment at the self service till. 
Tomorrow I will be the mother of all Mombies; a consequence of Aine sleeping off a dose of midazolam for most of this afternoon and entering the party zone at around midnight tonight. 
Tomorrow I will face a mound of washing and drying; a consequence of a minor leakage accident on the sofa bed this evening. 
Tomorrow I will be a complete failure at trying to please a ridiculously hard to please almost 9 year old; a day off school as a consequence of today’s seizure and siesta. 
Tomorrow I will have a scabby lip; a consequence of a satisfying ten minutes picking the dry skin off of my bottom lip until it bled earlier this evening. I know. I am a Goddess. 
So without wishing to labour the point, tomorrow isn’t another day. Well it is in terms of the Gregorian calendar, but really it’s just a continuation of today’s less than successful events. 
Just saying!
Night all!

Picture for those that don’t know Stan!

Self awareness. A work in progress …….

Today I’ve had a thought. Not a life affirming or life changing thought, but certainly one that has changed my feelings, about how I see myself. 

I’ve always considered myself a mum to a special educational needs child. And I am. Aine has learning disabilities, language issues, processing issues. She is quite a way behind her peers in so many areas.
After a tough day yesterday, I’ve realised that I am in fact a mum to a special educational and medical needs child. Her mobility is impaired. She needs help, she has very little independence. She has epilepsy that causes far more than the devastating seizures she experiences. 
I don’t think this is news to anyone else around me. I’m not telling any of my family and friends this, even therapists, medics or strangers. They all know this, don’t they? Is it just me that didn’t realise?

We have had a bit of news about respite recently. Up until now we have had a dozen nights a year respite, providing by a wonderful charity, and Aine adores her stays. We’ve now been ‘awarded’ for want of a better word, a lot more via social care. And I’ve been a little uneasy about it. I’ve had to look at myself and ask why. 
There are obvious reasons, my child will be cared for by someone I haven’t yet gotten to know and trust. But that’s a small reservation. I know that we have the opportunity to build a relationship before any stays take place. I need help to care for my child, no momma wants to feel that. But I have come to terms with that over the years. It’s a reminder yes, but the feeling is fleeting.
I couldn’t quite find the reaction, the emotion. 
Yesterday, it came to me that I was embarrassed about it. That the unease was embarrassment. I knew that I felt surprised that an assessment had deemed these many days as a basis, but why embarrassment? I am embarrassed to tell people how many hours are being written into our plan. Like I’m bragging, like I’m in some way ‘lucky’. Like I have faked the need some way and and now I have all this space, what will I do with myself, I get time off when other mums have no time off. I should say that no one has said this to me, this is my own inner monologue. Damn you conscience!
Then yesterday happened. Two serious seizures in one day. In the night, the quiet times, I saw myself through my Dad’s eyes. He was there when the first one happened. How I came into the room, took control of the situation. Put her into position, assessed her, issued instructions to the biggest. Get the meds, get the SATS monitor, get the phone. How I assessed when to give the medication, how I gave it, how I assessed when her seizure was stopping, how I cared for her afterwards. And how I cared for the needs of the other two as well, because it’s scary to see your sister so poorly and your mum behaving so differently, and they need support too. He saw his little girl handle this. (Not that he would say this by the way, but I know he felt it.)
I’ve never debriefed like that before. I have always said ‘it’s just what you do’. I have often said ‘I could have handled that better’ (as someone recently pointed out to me I’m very self aware and can be self critical). And I felt pride. Proud that I can handle a medical emergency. And not every mum has to deal with that. Not regularly anyway. 
For the last two nights, I have barely slept. I am tired, exhausted, run down and in desperate need of a break. That’s why it’s been deemed necessary to set our respite needs so high. Because this happens at least once a month. And every time I bounce back. But every time I don’t bounce as high as the last time. And soon I’m not going to bounce, I’m just going to flop aren’t I. That’s why. 
So I don’t need to feel a failure, embarrassed or needy. I need to be thankful. Thankful that the system hasn’t let us down, that it’s recognised a need and has funded the support. Thankful that there are human beings who want to support people like me, families like us. I need to see us like other people see us. 
I need to see the benefits that this future has. For me, my family, my girl!
I need to stop being so humble and to praise myself like I praise others. See in myself what I see in others. I suspect it’s going to be a long work in progress …….