A special needs parent is . . .

You wouldn't like me when I'm ANGRY!!!

If you are reading this hoping for assurances that it was all part of God's plan, that He chose you because you're selfless and strong and special, then you are in the wrong place.  Or if you wanted a list of how multi-skilled and multi-talented you are, how you're a nurse, doctor, pharmacist, physiotherapist, occupational therapist and teacher all rolled in to one, then you wont find that here.  If you thought this was going to be a life affirming description of how much better you are than the 'other' parents and their 'typical' kids then you'll be disappointed.  And you clearly don't know me very well! But if you head over to Facebook or scour the Internet, you'll find a multitude of stories, poems and platitudes that'll make you feel better.  You see, it has long since been apparent to me that actually the one characteristic that the majority of special needs parents share isn't compassion or selflessness, kindness or courage, it's anger! Special needs parents are ANGRY!

Just keep calm and smile . . .

In a former life, before the arrival of Little H, I came in to contact with a lot of special needs parents.  Call it fate, call it part of 'The Plan'; training for the life I lead now, call it coincidence or good fortune (perhaps misfortunate might be more appropriate some days) but I learnt a lot of lessons and a lot of skills in those years that have helped me cope with the trials and tribulations Little H, and the army of professionals we come into contact with, throw my way. One major lesson I took away was, to paraphrase a now rather irritatingly overused slogan, 'keep calm and smile'. Be nice. And don't get angry. Don't get angry. Don't get angry. Did you hear me? I said DON'T GET ANGRY!!!

Parents who were home schooling their children because they had been so let down by the education system, parents fighting the Local Education Authority to place their child in a school that might at least attempt to meet their child's needs rather than dumping him in the local mainstream, parents fighting teachers who had neither the time, the resources (or sometimes the inclination) to differentiate the class work yet further so that their child could access the curriculum; I have met them all.  I have seen mothers cry in anger because their child has been discriminated against, fathers crying in frustration because medical incompetence has put their child's life in danger, parents physically shaking at some injustice or other.  I have heard some horrendous stories of children and families being let down repeatedly by the education authority, the health authority and social services.  I have been shocked, surprised and annoyed on their behalf.  But often, part of me thought, if you'd just smiled more and asked nicely then perhaps things wouldn't have got so bad. Maybe you went about it the wrong way. All this shouting and shaking and getting angry isn't going to make people want to help. And I vowed never to be THAT parent, the angry, shouty, shaky one, the one whose voice you can hear buckling under the pressure of trying not to cry.  After all, I was at an advantage- I could see it from the teacher's perspective (having been a teacher) as well as the parent's perspective.  I would be the epitome of niceness and calm!

Happy, happy, joy, joy ...

And Little H came along and life was slightly more complicated than it had been with Cheeky.  But I learnt the names of all the receptionists and I started telephone conversations with 'I'm sorry to trouble you' and 'I wonder if you could help' and I said please and I said thank you and I thanked people for their time, their patience, for going to such trouble.  And it worked. Receptionists squeezed us in for last minute appointments, chased up test results, rang us with cancellations. Being nice worked! I patted myself on the back for being so cunning!

Then H became more complicated (or complex as the doctors LOVE to say) and we needed more appointments and started seeing more and more and more professionals. I snapped and swore at a receptionist who had the audacity to ask if I was sure it was an emergency, while H screamed in the background for the 16th hour in a row, Cheeky sat crying for his lunch and I couldn't remember the last time I'd slept for more than an hour at a time without having to get up to catch projectile vomit, or sit in a steam filled bathroom to ease his breathing or just walk backwards and forwards, listening to endless crying but being able to do nothing to help.  The swearing wasn't my finest moment. It got me an appointment mind you but I did go and shame-facedly apologise to the receptionist.  I had a word with myself after that. I repeated the 'keep calm and be nice' mantra to myself, but I realised it wasn't as easy to stay calm and smile when you've barely slept and spent so much of your time listening to screaming and crying that you'd eventually reached the 'if you can't beat them, join them' point and collapsed in a corner sobbing and rocking.  Yeah, not quite so easy to stay calm and smile then!

Time went on and the list of professionals grew. At last count there's 23.  That's not an exaggeration, I can list them if you want (paediatrician, neurologist, dietician, community nurse, opthalmologist. . .)  And Little H needed more services and equipment (specialist buggy, standing frame, supportive seating system, lycra suit, piedro boots. . . ). That's a lot of phone calls, appointments, letters. That's a lot of professionals, receptionists and opportunities for things to go wrong, or get lost, or get forgotten about, or get sent to the wrong person. That's a lot of 'I wonder if you could help' and 'thank you for your time' through smiling, gritted teeth. 

I try very very hard to remain positive and happy and calm, to remember that H isn't their only patient/ client/ service user/ whatever the politically correct term is these days. There are times though when phone call after phone call and email after email just don't seem to get the job done. Times when the service you receive (if at all) is so far below your expectations that it beggars belief. Times when Little H and I have been so let down that I can feel myself shaking with anger. Times when Little H's health has been put at risk and I could cry in frustration. These are the times when I have to take to the computer and write a 'Letter Of Complaint'. 

Getting a bit of a name for myself!

Yesterday as I finished my most recent letter of complaint (with gems such as 'it is unfathomable to me how after 9 months this issue has not been resolved' and 'It should not take this much effort on my part to organise a simple care package for my son.') and was imaginatively saving it as 'complaint to . . .', when up popped a list of recently written complaint letters. I appear to have become a serial letter-of-complaint writer.  To be fair, I don’t just sit around moaning, waiting for the next thing to complain about – it’s only for the really serious issues that I have made an official complaint, mostly for when some oversight or neglect has put H’s health in danger.  One letter resulted in a complete review of a service and an overhaul in the way it was provided, another ensured rules and regulations that were appropriate for most were adapted for H and who knows what yesterday’s letter will achieve – the head of service is coming to visit us next week to discuss the issues I raised.  It is frustrating though that it takes angry complaint letters to get things done.  I am busy enough with appointments and phone calls and therapies without having to complain to get a basic, acceptable service. 

Little H has just turned two.  So far I have submitted four official complaints about the care he/we have received.  Luckily, I have been able to channel that anger constructively into a good letter of complaint, but each time leaves me exhausted and causes anxiety about the knock-on effects complaining may have on his care and the perception people will have of me.  It is both mentally and emotionally draining.  I feel compelled to write though, partly to feel that I am doing something useful with all that pent up emotion, but also because if someone doesn’t complain, nothing will get changed and at least I am in the fortunate position to be able to raise these concerns in a (relatively) coherent manner.  What about those parents who have difficulties with literacy, who lack confidence or perhaps have learning difficulties themselves or English as a second language?  What happens to them when their care is substandard?  Who advocates for them?

Yesterday, as I challenged the person responsible for the mix up that meant H could still not be left with his carer for a few hours after nine months of organising and planning, I felt myself start to shake.  I tried to keep my voice on an even keel but I could feel it breaking as I explained that their failure to resolve this issue had resulted in H’s older brother Cheeky not being able to go to the soft play area as promised.  Instead, with me, he had to stay and babysit his brother and two carers.  Mix ups and forgotten letters and broken promises and mistakes don’t just affect me – that I could handle perhaps, but they affect Little H and they affect Cheeky.  The whole family suffers as a result.  And that’s not fair.  As I explained this, as calmly as I could, I felt my legs shaking and a burning lump in my throat at the injustice of it all.  And I realised then, that I am becoming THAT parent.  That shaky, shouty, angry parent.  This is what the NHS has turned me into, in just two years. 

And I haven’t even started with the Education system yet.  God help us all!

***********

Amazingly, there's someone else out there with as warped a sense of humour as me and has voted this post for the 'funniest post' category in the #SWANs!

If you'd also like to nominate this post, you can do so by following this link:

Or if you'd like to find out more about the SWANs visit the SWAN UK website: www.undiagnosed.org.uk 

Resuscitation Status

I apologise in advance for the overly ‘ranty’ nature of this post, but I really feel the need to get this off my chest.  It irritates me immensely and in fact I find it inherently offensive that, once again, I have been asked about Little H’s resuscitation status.  For those not familiar with the term, it basically means “If your son stops breathing, would you like us to help him out or shall we just leave him to it and wait for him to die?”

Pretty offensive right?

Now, I can understand why such things do need to be discussed.  Imagine a terminally ill patient at the end stages of cancer, for example.  But I struggle to see how this is relevant to Little H.  He is a happy, smiley, mostly-healthy little boy.  But on at least four occasions I have had to justify his right to live.  I am 33 (for at least another week anyway) and my resuscitation status has never been called in to question.  If I collapsed in Tesco, it is a given that the emergency services would do their utmost to save me.  Why is the same consideration not given to my son?

 Is it because at nearly two and a half, developmentally he is still like a new born baby?  Is it because he regularly stops breathing during seizures and needs to be resuscitated?  Is it because his condition is life limiting as well as life threatening and that he is not expected to reach adulthood?  I’m not sure.  Probably a combination of the last two I expect.  I sincerely hope that simply being developmentally delayed isn’t significant enough reason to question his right to life – this isn’t Nazi Germany after all.

I referred in a previous post to a Doctor, who didn’t know Little H, who gave us a whole “Quality versus Quantity” of life talk, which basically implied that H had no real quality of life.  He has been ill at times, very very ill, but at no point have I felt that his long term quality of life is impaired.  My quality of life deteriorates when I am ill; I once spent a week in bed with tonsillitis – should I have been put forward as a ‘Do Not Resuscitate’? 

With my sensible head on, I can see that Little H rings a few alarm bells.  I can see that everyone involved in his care needs to have a clear plan.  I can understand that since he has ‘palliative’ care and attends a hospice, discussions such as this are inevitable.  And, although it breaks my heart, I realise too, that there may come a time in the future when this discussion is appropriate, when his quality of life might be such that invasive medical interventions would only add additional pain and suffering for very little gain; that ‘full resuscitation’ might not be in his best interests.

But that time is not now. 

Look at him.  Look at that smile.

“Do I want him resuscitated?”

How can you ask that question?  

A father's day tribute

I am looking at a photo of my dad. It was taken back in 1990, during Italia '90. I'm not a football fan, but that was a big year for Ireland and Jackie's army. 

 "we're all part of Jackie's army, we're all off to Italy, and we'll really shake them up, when we win the world cup, cos Ireland are the greatest football team! Ole, ole, ole . . ."  

Maybe you had to be there. 


Me and dad went to Ireland on our own, leaving my mum and 3 brothers behind. It was for a christening or something. We took the coach all the way there.  (well, a ferry too, obviously).  I remember shopping for football related souvenirs for my brothers. I'd have been 11, nearly 12 then. My dad looks so happy in the picture. 


He has his hands up in the air and this huge grin on his face. He always took a good picture.  I think it was the little twinkle in his blue eyes that did it; a hint of mischief. 


 My dad died 3 years ago, a month to the day after Cheeky was born.  The last time he left the house was to meet his first grand child just hours after he was born.  It must have taken every last ounce of strength to walk from the car, but he did it. The nurses broke the rules and even allowed him on to the labour ward. He was the first person after Mr. M and I to hold Cheeky.  I will be forever grateful for that moment and I truly believe my dad held on so that he could meet his grandson, his namesake, before he died. 


 I wrote a poem for his funeral and read it out as a tribute to him.  This is it: 


 My dad 


 My dad's eyes are the bluest blue, 
Like stars they twinkle and shine. 
There's that hint of mischief in his look, 
And a twinkle all of the time. 


 Laughter lines crinkle around his eyes, 
Caressing his jolly face. 
Merriment dances on his lips. 
Dad's smile -a warm embrace. 


 He's only little, is my dad, 
But he has a big, kind heart. 
His warmth and generosity, 
Really sets him apart. 


 Nothing's ever too much trouble, 
He'll do anything for you. 
He always takes time to give others a hand, 
Dad's generous through and through. 


 I don't think there's anything my dad can't do, 
Never taught- he just seems to know. 
Building, fixing, plastering, painting . . . 
You name it, he'll give it a go. 


 My dad's a really keen worker, 
The keenest worker I've known. 
But he's also devoted to mum and us kids; 
No matter where he works, he always comes home. 


 My dad likes a drink with his buddies, 
A pint in the pub with the lads. 
Then his eyes twinkle all the more brightly, 
No matter how many he's had. 


 But dad's also quiet and gentle, 
A big softy on the inside. 
He'll talk away to the cats, 
And he cries at 'Surprise Surprise'. 


 My dad's not suffering any more. 
He's no longer in any pain. 
And although we'll miss him terribly, 
I know we'll see him again. 


 My dad never moaned or complained, 
No matter how tired or ill, 
He was always joking and smiling. 
I'm sure he's doing that still. 


Right now he's with our sister, 
Together in heaven they'll be. 
Dad's busy building or fixing things, 
And driving round in his JCB. 




 Happy father's day dad. Xxx

Little miracles, big acheivements

There’s a poem/essay that occasionally does the rounds on the social networking sites, called ‘The Special Mother’ by ErmaBombeck.  There’s a line in it that I love: 

“She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

I took hundreds of photographs yesterday of Little H trying to get a balloon into his mouth.  I was torn between not really wanting him to put a balloon in his mouth in case it burst and desperately wanting him to achieve this tiny little milestone.  He was so determined, bless him.  Mouth open, head bobbing, fist clenched, time and time again getting close but not quite there.  When he finally managed it, I squealed with delight, took more photos and declared to anyone within earshot “he put the balloon in his mouth” whilst wiping away tears of joy.  I genuinely couldn’t have been prouder. 

Little H is nearly two and a half.  I’m not sure where on the list of developmental milestones getting a toy to your mouth comes; probably somewhere around the 2-3 month old mark.  I could look at the Bounty website; or Baby Centre; or one of the many other ‘helpful’ websites that send out weekly emails telling you what your baby should be doing and when, but I’ve gone past finding them completely soul destroying now and really don’t care.  Little H will do things in his own time.  And each tiny little achievement he makes fills me with immense pride.

I hear mothers complaining about their children not being on the same reading book as their peers, about them being in the middle group for maths, about them not being able to write their own names yet.  Sometimes I wonder if they can see just how much their child has accomplished already and take time to be proud of that? 

I used to teach in a mainstream school and remember marking books with one compliment and three points to improve.  This was the policy.  Identify one thing they’d done well, but point out what they should have done to take them to the next level.  It felt like we couldn’t appreciate what the children had achieved without pointing out just how far they had to go and how much better they could have done.  This was in a primary school.  The children were 10!  The sad thing is, I know my school wasn’t alone in teaching and marking like that.  Pressure to meet certain levels mean that nothing is ever quite good enough.  Conversely, what I loved about teaching in a special school is that we were encouraged to find the positives in everything and really celebrate the children’s achievements, no matter how small.  A much nicer way to teach and surely much better for a child’s self-esteem?

I sat at a mother and toddler music group recently and I watched as the babies, sat (independently) by their mothers, clapping their hands, reaching for toys, making eye contact and smiling at each other.  Their mother’s continued conversations, above the children’s heads, oblivious to the hundreds of achievements their children were making.  That same session H turned to the sound of me jangling bells by his head and smiled appropriately at a large dog puppet.  Huge, wonderful achievements. 

 

 How lucky I am to see and appreciate each of the little steps my son makes. 

How lucky I am to be able to celebrate everything he accomplishes without worrying about the next steps, where he should be, where his peers are at. 

How lucky I am to be able to value his every achievement, no matter how small.

How lucky I am to witness such miracles and recognise them as such.

This post is written as part of the  #definenormal blogging challenge courtesy of the lovely RenataBplus3 from Just bring the chocolate. 


Pop along, read the other brilliant #definenormal posts and add your own idea of normal too.  Go on!  You know you want to.

Although it's a little late, I'll link it into #specialSaturday too, the theme of which is 'Achievements'.  Check out  the other special Saturday posts and keep up to date with the new themes: 
by joining the facebook page -http://www.facebook.com/SpecialSaturday

Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday

Reading and following the Special Saturday Blog -http://specialsaturday.org/home/

The night before - preparing for Little H's gastrostomy

I'm trying to pack.

But I keep stopping and starting.

To charge the camera.

To watch the jubilee celebrations.

To type this.

My mind is disjointed. 

Thoughts forming and being pushed away.

I am struggling to concentrate.

I have tried writing a list: it says nappies, wipes, pjs, eczema creams.  They are in the bag already. There are too many nappies. And too many pyjamas too.  I've packed his fireman Sam ones, but they might be a bit warm, so I've packed the bob the builder short ones, but they might be too cold, so I've put in the long Bob the Builder ones too.  It's like the goldilocks of pyjamas in that bag. 

I've reached the end of the list.  What now?

It's not like we've never been to hospital before.  But we've usually gone in a flurry of sirens and flashing blue lights.  No time to worry. No time to think. No time to panic.

This is different. I have to plan. I have to think. 

And it's in a different hospital. 

I know my local hospital. I'm familiar with the staff, familiar with the routines. I know where to find the sheets, where the toys are kept, where I can get a coffee. I know what I need to bring and what they'll already have.  

We've not stayed here before. I don't know what to bring.

Of course, it's in the centre of town.  There are shops. Even if it is a bank holiday. We are only 20 minutes from home. If I forget anything it's not the end of the world. 

But then it's not really the packing that's worrying me is it? But if I focus on that. And on getting all the beds changed. And on getting the ironing done. And on mopping the floors.  And on making sure the camera is charged. Then I won't think of anything else.

And wont think 'what if ...'

And I won't worry about the anaesthetic.

And I won't hear the seizure monster threatening his return.

And I won't notice the sick feeling weighing heavy in the pit of my stomach.

And I won't remember that my sister died during a 'routine' operation.

And I won't notice how much my hands are shaking. Or how fast my heart is beating.

And I'll get the overnight bag packed. 

And I'll have such great big cuddles with my beautiful bundle of joy.

And tomorrow will come.

And this too will pass.