Monthly Archives: July 2016

Dear Dr’s Receptionist ….

…… I’d like you to know how I felt after our short interaction this morning.

If you recall, I called because I couldn’t attend my morning appointment.  I thought I could manage it with three children in tow but events conspired against me.  Now I know I often cancel appointments, I try my level best to give as much notice as I can, I don’t want to be one of the 936 million patients that failed to attend their appointment last month, as your passive aggressive notice in the surgery informs me.  I respectfully asked if I could have an evening appointment, at either surgery site, and was told if I had called at 8.30 a.m. this morning I could have, but they’ve all gone now. Now did I really need to know that?  Did you really need to make me feel like a total failure for not knowing the protocol, which incidentally seems to change on a regular basis.

Now unusually, at 8.30 this morning I was still asleep.  How decadent you may think, here I am working away and you are lying fast asleep in your lovely comfy cosy bed.  Here is why.

At 2.30 a.m., I was woken by my child having epileptic activity.  She was in bed with me, whilst my husband slept in her bed (as regular a occurance as your changing protocols). For an hour I battled to stop from waking the whole household, I watched Mr Tumble, Humf, Squiglet and she calmed down.  Just as I was dropping off, maybe 3.30 a.m., my three year old walked in, hot and clammy, and clearly needing some attention.  I then prepared drinks and medicines, gave up my place in my bed, listened to them fight and love each other consecutively, until calm.  No sleep.  Just calm.  Just as I am dropping off to sleep, horizontally at the end of the bed, I hear “Mummy, I just peed in your bed”.  Great.  Mobilising, I sourced a large towel, a new pull up and settled him back off.  Not asleep, but content.  We must have been nudging 4.30 a.m. now. Again, just as I am dropping off, the little one climbs onto me.  “Let’s go downstairs mummy, let’s watch Octonauts”.  I suggest he goes back to his own bed, he agrees, on the proviso that I lie on his floor, on a homemade pillow bed, to reassure him.  Off I go.  Maybe, 4.50 a.m. now, and I’m lying on four squashed pillows, with a bad back, sciatica and sore muscles.  But never-the-less, we both slept.  Until 9.15. a.m.  Decadent it most certainly was not!

So, now you know.  I wasn’t being difficult, I wasn’t being “one of those 936 million” I was needy, I needed support, and help, and at the very least kindness.  I took what you dished out on the chin and asked you to help me to get my prescription for my happy pills in time for my holiday.  I ridiculously thanked you for your help.  Seriously, I need to get a grip!

This lay heavy on me.  I was not happy.  I’m not your average mum.  I’m fighting battles more than you, or anyone else, knows.  So I took action, I will be putting some constructive recommendations to the patient panel.  And, whilst you have now sorted this out, and politely and kindly advised me so in a separate phone call, (which I feel is a reflection on my phone call to request the patient panel’s details and maybe a little guilt)  I still feel compelled to let you know how that has impacted on me.  It’s not the first time I have been left feeling upset, angry, disappointed, and I should say it is never with the GP who is incredibly supportive.  Nor the nurse who makes a  point of asking after Aine.  It’s always the receptionist.  It’s not just one I’d like to add, it’s the faceless portrayal of the battleaxe gate keeper.  I’m asking in future, please be kind, be considerate, be aware that your words may have an impact.  Some people deserve some leniency.

Thank you for your understanding.

A tired, sleep deprived, stressed out, Supermum to a tiny Warrior!!

 

 

Annoyed-Face-Meme

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When guilt is the motivator ….

The black dog has been visiting again recently.  At a recent counselling session, I was asked what makes me get out of bed in the morning.  When the dog is lying heavily on my chest and tummy, what motivates me to move.  My answer?  Guilt!  The children have places to be.  MrM has to earn the corn.  I am the facilitator.

 

I don’t believe parental guilt is limited to special needs parents, I just think in our case there are more things to feel guilty about.

 

Monday, the guilt was placed by the biggest one.  I pulled up outside of school and she said ‘I feel like something bad is going to happen’.  I questioned her as to what, and she said ‘I always feel like that when we get here (school)’.  I cracked a joke, ‘you’ve only got three years of that left’.  Black humour; gets her through the apprehension and me through the guilt.  I drove away feeling awful.  Awful that she hates school so much, that I can’t offer anything to help but a naff joke, and I keep taking her to the place!

A little later in the day, the guilt was placed by Aine.  Well not Aine actually, she was blissfully unaware.  Totally self-inflicted.  It was sports day at school.  Parents were invited.  I didn’t go.  There are two reasons.  I wanted to go to lunch with some special needs mums.  That was the predominate reason.  She also hates it when we go into school for anything other than dropping off or collecting.  Her worst behaviours come to the fore and I am embarrassed.

Once I collected her from school, I dropped her at respite.  Extra respite because I’ve been struggling a bit.  Overwhelmed with all my tasks, lack of sleep, constant battles.

Now I know she loves respite.  She genuinely does.  She has a tv by her bed.  She can lie down whenever she asks to.  She has one-to-one attention the whole time and does everything she wants to do.  Never does she hear, ‘in a minute, just wait until I finish this’ or ‘I’ll get it in a second’.  Of course she loves it.  But I feel the guilt.  Guilt that I can’t cope and she has to go away to give me time to regroup.

 

Tuesday was the guilt I felt with the littlest.  It was a pre-school day.  He wanted to stay with me.  He was sad, he wouldn’t get his shoes on, he insisted.  I threatened the naughty step, disposal of toys, telling Daddy, but he was stubborn.  In the end I realised maybe shouting wasn’t the way forward.  I asked him, nicely, and told him that it would make me very happy and proud.  I told him I was sad when he didn’t do as I ask.  He said ‘I am sad too mummy.  I’ll do it now.  I love you’.  I felt the guilt that I had gone around the houses trying to resolve the issue and I didn’t just know what to do. He  went into pre-school happy with a big hug and a kiss for me.

 

Throughout the day I was guilty because I wasn’t doing chores.  That I hadn’t called about Aine first thing, that I hadn’t checked on a friend.  Then at tea time, we all went out.  All except Aine, because she was in respite.  More guilt.  A mum with her son, in his wheelchair were at the next table.  Extra guilt because I wouldn’t bring Aine.  It would be too stressful.  Nobody would enjoy it.  She was a better mum because she did it.  And then I ate my onion rings.  I told myself I wouldn’t, not being diet friendly.  I chose my food wisely, but the onion rings were there.  Tempting me, eat me, you know you want to.  So I did.  I felt guilty for eating them.  But that quickly went once replaced with pride at not ordering a pudding.

 

I live with perpetual guilt.  Guilt that my children eat unhealthy foods.  Guilt that I sit on my ass when I should be doing housework.  Guilt that I don’t check on my friends and family enough.  Guilt that I spend too much money on crap.  Guilt that I don’t do enough physio for Aine, I don’t source enough activities for the children, I don’t take them to fun places, I don’t have a Facebook page full of joy and laughter.  Guilt that I’m not getting it right.

 

Now I know that it’s all rubbish.  I really do.  I don’t need a lecture.  I’m not fishing for praise.  I know that my children love me, are cared for, have full tummies, albeit full of crap.  They are all immunised, clean, have nice clothes.  They have a nice home and lots of toys and a mum who is constantly busting a gut to give them the childhood they deserve.  I honestly do know this.  I am working on believing it.  It’s work in progress, but for now, guilt is the motivator. 


 

The squeaky wheel ….

I am incredibly British. I hate making a fuss. When things go wrong, or not my way should I say, I can react one of two ways. I can slide into passive-aggressive sulking, or I can hugely over react. (I reminded MrM recently of my argument with a fairground attendant over his refusal to allow anyone to support Aine on a bouncy castle; he took none too kindly to being told it was discriminatory, nor to being told he couldn’t bully me). I never seem to strike that ‘assertive, firm but fair’ balance in my home life. Which is strange considering in my career, this was a regular everyday requirement. The times I’ve heard ‘thanks for being so understanding’ when on the inside I’m screaming ‘I don’t
understand, I just can’t let you know without going all Exorcist on you!

Because of my baby’s issues I spend a lot of time chasing people. Organising things. I do much more family admin than your typical mum. And it’s frustrating when you hit a brick wall. Read frustrating as soul destroying. I don’t have time to be passed from pillar to post. I just want you to say ‘I know you have a lot on, let me help, I’ll sort that out for you’.
Very recently it has been highlighted that I shouldn’t be lifting Aine. She’s eight now. 25 kilos. At present I lift her in and out of the car, carry her upstairs after a seizure, bring her downstairs either in my arms or on my lap as we bounce from step to step. I’ve recently been told that it isn’t ok to do this. She’s getting bigger. She needs her dignity and I need to protect my back. A ‘crisis’ referral to the disability team at our local council was made. I’ve had a phone call to say it will be 10/12 weeks before an assessment of our home can take place. 
As I’m sitting chewing that over I see a friends post on Facebook. She’s waited six weeks for a specialist bed to be manufactured only to find out today that it was never ordered in the first place. An administrative error. She states in her status update that she’s had to loose her shit on this professional and why should she? Fact of the matter is, she shouldn’t have to. 
Now I’m not one to take advantage of the system, neither is the mum I talk about, we both do whatever we can for our children. But why, when there are systems in place to support us to care for our children, do we have to go bat shit crazy to get it. 
When I asked for some help with bathing Aine a few months ago, I was told we have to buy steps and boards, these can’t be provided, because she could always have a stand up wash. A bath isn’t necessary. Hmmmm, I wonder how my back would hold up to supporting a child with CP and behavioural difficulties whilst I wash her, standing up! I’d rather break my back getting her into the bath! Kids need bath time. It’s a wonderful experience for them. 
I don’t want to seem like a moaner, I don’t expect anything for Aine that others don’t get, but I have countless examples where children and families are left struggling and it takes a big fat strop to sort it out! 

I’m not a squeaky wheel, it’s not my nature but let’s hope you don’t catch me on a bad day, you’ll be cleaning up ectoplasm for weeks!

MrM, this one’s for you ….


Achieving inclusion is hard. Listen to the rhetoric and you wouldn’t believe that. We have laws, we have systems and we have procedures. What’s so hard? Reality! Not every place can be adapted, not every activity can be made safe, and not everyone can ignore the child having a meltdown. I confess I shy away from certain activities and occasions because I know there will be flash points and I will have to manage them. I call it ‘picking my battles’! Sadly this often means that we don’t get to do things we would like, or we do things separately to ensure not everyone misses out. 

Very recently Aine did something I can honestly say I never thought she would; she went on an overnight residential with school to an adventure centre. I was nervous, what if she had a seizure and needed me, but I didn’t want her to miss out. So, as the apron strings wouldn’t stretch quite that far, MrM, me and the littlest went for an overnight stay nearby. 
We left her at school with her little trunki, kindly donated by The Daisy Garland, a bag full of goodies for the bus and a flutter in my tummy!
Not long after, the rest of us got on our way to Caernarfon. 
The littlest was so excited about staying in a hotel. He loved that he had a little bed next to me and MrM and promptly created a new game of jumping between the beds. He was a little superstar, didn’t stop all day, and luckily we had the sunshine to facilitate that. We had icecreams, climbed the castle steps, ate fish and chips and we sat at the small harbour watching the boats come and go. 
Aine had a far less sedate time; she rode on a speedboat, had icecreams at the harbour, toasted marshmallows by a camp fire, went in a canoe, and I believe there was some safety archery as well. Thankfully her teacher kept in touch; ringing us in the evening and the following morning. To hear about all the things she did, and enjoyed, filled us with absolute joy! Things we probably would shy away from, for fear of behaviours, she got to do. She had a great time and with everything she has to contend with, that’s pretty special. Talking about it on our way home, feeling content that it had all gone well, MrM said to me ‘can we have a happy blog now’ so MrM, this one’s for you.