Monday 2 October 2017

Brand New Website!

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Monday 4 September 2017

Starting Special School - My top tips!

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As milestones go, this one is pretty spectacular. The chances are that if you are at the point of starting a special school you have already won a number of battles to get you there. When our daughter started a special school two years ago I was thrilled and terrified in equal measure.

Mojo was not expected to ever reach school age and so putting her into her uniform and taking her to school for the first time was pretty overwhelming emotionally. We were very fortunate to have found a local special school we all loved and having been one of the early recipients of the, then very new, EHCP we were accepted for a full time place.

I'd been so concerned with getting her 'in' and taking that iconic (behind a kitchen door in my uniform on my first day) photo that I found myself a bit at sea with the realities of trusting other people to look after her, to 'get' her. What if they got the medication wrong? What if they don't understand her and she feels scared? What if they underestimate her and don't push her?

I read so many articles about dealing with your child starting school but very few of them addressed the things I was feeling, so this year with two years under our belt I'm offering up my top tips for starting a Special School.

1. Harness your inner control freak.
The chances are you have spent the last four or five years juggling a carefully co-ordinated (or if you're anything like me, insanely chaotic) conveyer belt of appointments, therapies, medications and care plans. You are Teacher, Pharmacist, Therapist, Nurse. You are at the wheel of everything that goes on in their world and letting go of that wheel, even just for a few hours a day, is HARD. It took me a long time to realise that I still had control I just gained a team of very experienced navigators.

2. Love your Home-School book.
One of my big concerns was that I would lose my holistic overview of Mojo's progress, the mini milestones, the minutiae that I'd been absorbed since she was born. Home-School books were the cure for my angst. A daily diary that travels with your child detailing what they have done that day. It isn't just the knowledge that the reason they have orange toe-nails is that they were footprint painting but these mini communications can cover whatever you need them to, ours for example, details fluid balance on my request. Your Home-School book helps you to build up a relationship with the classroom and provides a security blanket in times of control angst.

3. Know you EHCP back to front.
This could easily be a whole other blog post so I'll just stick the basics, know your child's EHCP inside out and back to front. While your child is in Early Years you will get chance to review it every six months so make the most of that settling in time to ensure you are completely happy with the content and the exact allocation of support resources before you move on to annual review in Year1.

4. There is such a thing as good nagging.
This one really relates to in-school therapy rather than teaching, I've never found I've needed to nag any teachers, but therapists can vary. Many (most) are very good but there are often strains on staffing or workload and especially in cases that involve notoriously frustrating equipment suppliers things can slip through the net. I'd advise you always make yourself known to the therapy team working with your child and ensure you have direct contact details for them during the holidays as well as term time.

5. Volunteer
Because you've got nothing better to do, right? I know, I know it sounds like pretty much the least appealing thing when you have 9 million things on your to do list but in the past couple of years the friends I’ve made and the chance to help provide resources that make a difference for our children, make it totally worthwhile. If you have the chance (and the time) to volunteer in the classroom or join a PTA or even bake a cake for a fundraiser it’s definitely worth considering.

6. Don’t fall into the comparison trap
Now it’s entirely likely that you are a far better person than me and therefore this may not be a problem for you but it was a funny one for me to get my head around so I’ve included it. Not having gone through any of the usual NCT groups or mother and baby clubs I had never really been in an environment where drawing comparisons between Mojo and her contemporaries was possible. I found myself worrying that of the 5 children in her class she was by far the most physically limited and her communication was the least developed. I worried that I might have been letting her down. Should I have done more physio? Should I be fluent in Makaton? The truth of course is that there is absolutely no mileage in drawing arbitrary comparisons about children with completely different physical and intellectual abilities. It’s just plain daft, don’t do it!

And finally…

7. Remember you still know best
If you’re lucky enough to be in a brilliant school then it’s very easy to be awestruck. In general teachers who work in specialist education are pretty phenomenal people and they know their stuff. Don’t ever lose confidence in your own knowledge of your child. Your child’s needs are completely unique and you will always be the last word on what works for them. Learn from the school absolutely but make sure that they also learn from you.

So that’s my list, and if you're starting this September, good luck, you'll be fine.

Saturday 15 July 2017

'The Yoga Mums'

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When I was pregnant with Mojo I remember asking our consultant what I should do about NCT classes. He suggested, quite insightfully really, that I might find listening to other mum's (perfectly legitimate) worries about birth, difficult in the circumstances. It would be easier to go it alone. So I did.

I went it alone for a very long time because even after she survived I recognised that any re-telling of Mojo's birth story smacked a little of drama top trumps so I didn't really talk about it, or if I did, I glossed over the trauma and focussed on the joy. I got used to not really being able to talk to anyone who understood. I found friends on the other side of the world who I identified with more than I did my real life friends because they had been through exactly the same journey with their children with HPE.

So it came almost as a surprise when, a few months after Mojo first started school, I was invited to go for a coffee with a few of the other mums. Being a school-run mum at a special school is a bit different from your average school not least because the majority of the children travel from further afield and arrive on local authority transport rather than being dropped off by parents. It took me a while to work out that most of the adults waiting in reception at 3.30pm were travel companions, rather than parents. The number of parents who collect is actually quite small. You end up seeing the same faces each day. This might make me sound a bit weird but there was an instant affinity, we were all on nodding terms, then small talk terms then we found ourselves in a coffee shop up the road.

Once we had covered off how amazing the school is and how happy our kids are there. We started to swap diagnosis stories and hospital anecdotes and it was the biggest lightbulb moment I've had as a parent.

I'd found them, in real life, I'd found the people I didn't need to self-edit for. I didn't need to sugar coat our reality to. The people who understood the language we spoke in with it's medical shorthand and acronyms. It was so liberating it gave me an actual head rush. I was listening to a mother talk about her daughter's diagnosis and making jokes about how handsome the doctor was and I was nodding along in recognition. We were casually discussing PICU, brain structures, resuscitation, seizures, pain management, grief and relationship strains. We were like your average mums group swapping stories of the non-instagrammable side of life.

It was only as I caught the expressions on the faces of the actual average NCT group sitting next to us that I remembered we weren't. We totally top-trumped their birth stories that day. There are not many social situations when 'Yeah, she nearly died like 5 times' is met with 'oh god yeah that happened to us too'. When I pointed out to the others that I thought we were scaring the new mums we amused ourselves with the idea of 'what the hell kind of NCT group is THIS?' It wasn't a malicious 'them and us' thing it was just a way to cope with having the kind of life that evokes horror struck expressions in others.

From that first meeting we started to meet up regularly, we set up a whatsapp group and before long that small group of women knew more about my life than most of my friends. While the relaxed socialising is essential they also became my first port of call in a crisis. When I was scrolling through facebook late one night and saw that a child with Mojos condition had died, suddenly and unexpectedly, I was able to send an 'anyone awake' message which was met with universal, 'yep, what's up?' and moreover when I explained, it was met with total understanding, one mum recalling her daughter's oncology ward when children being treated alongside them passed away and the debilitating fear that accompanies the grief and sympathy. I had someone there to talk to until I fell asleep.

We started to support each other in more than just the crisis management, we started talking about self-care and the importance of not always making everything about the children (or at least trying!) it made me examine my life and how I see myself.

Then one day someone mentioned Yoga. I've never done Yoga in my life and I was once told at a gym induction that I was the least bendy person he'd ever met. Not for me I thought! Thanks to the enthusiasm and persistence of one of our gang the school agreed to let us use a room there on a Friday morning to set up a parents Yoga session. So I went.

Turns out getting out of my head (in a non dry white wine way) was exactly what I needed. I found the first few times I wanted to cry from the sense of release it left me with. Once I was used to the feelings of letting go I started to crave it. Every Friday morning I was left on a huge high and with a clear head for the weekend. It was quite something.

Our lovely Yoga instructor always tells us that there is such an amazing vibe in the room when we have our sessions. I think the intimacy of working out all our heavy emotions and physical manual handling stresses brings us even closer together. We can laugh, we can fall over, we can cry if we like.

I'm almost embarrassed by how much I love these women, how much I respect and admire them. How much confidence they have given me. How much I need them. We never really acknowledge it, like most groups of friends if we get a bit 'I love you man' we laugh at ourselves. I have warned them however that when we eventually get around to drinking to excess together I will definitely be the one telling them all how much I love them.

They have become my tribe.

I used to roll my eyes a bit about the idea of finding your tribe, particularly in the blogging world. I've never been any good at social media networking but the thought struck me that the other SEND bloggers I was so awed & intimidated by were in fact other real-life school mums going through all the same things as us. Why would they not want to be 'friends' with my blog? This thought led me to being brave enough to join some Facebook
groups and guess what, they are lovely and supportive and kind to each other and it's all a bit marvellous.

So my message here really is to the mums still in that going it alone phase. When you're ready and when you're able, there will be friends somewhere waiting, who get it. I say when you're ready because I wouldn't have been ready in those early years. Most of the friends I am talking about here are 4 to 7 years into their journey, I'm certainly not suggesting that the day after you receive a devastating diagnosis you're all set to find some mates for a good lol about how shit it is. But when you are ready and when you do find them, you'll never look back.

Sunday 18 June 2017

Father's Day the SEND way

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Last night I wrote a blog post for the first time in weeks, I've been really struggling lately and it was a very honest account of that and of some bad news we had recently about more surgery for Mojo. As I usually do I asked my husband to read through before I published it. As I watched him read I saw the sadness creep over his face. There was nothing there he didn't know but it was evidently difficult for him to see it written down. When he finished reading he didn't say anything for a minute and then he said 'yeah, it's good...but when you write about carrying Mojo it's we not I'.

This morning I watched as he labouriously constructed a DIY sun shade den in the garden so that Mojo could play out and a completely different blog appeared...

Dear Daddy,

Since it's Father's Day there are a few things I've been meaning to let you know these last 5 years, so here goes.

Thank you.

Thank you for having faith in me when everyone thought it was hopeless to give me a chance.

Thank you for being brave enough to challenge the neo-natal consultant who wanted to refuse me basic intervention the day I was born.

Thank you for sleeping in a chair by my hospital bed more times than either of us would care to remember.

Thank you for getting up from that chair and going to work as though you were living a normal life. You did that for us so that Mummy could be there to be my voice and my advocate and we love you for it. We know it's hard to leave.

Thank you for being there when I wake up at night. From the 4am feeds when I first started to take a bottle at 10 weeks old to the 3am feeds 6 years later it is usually your bleary eyed face I see first when I wake in the night. Your reaction time beats mummy's hands down.

Thank you for getting angry and frustrated with medics and medical admin. When we first started this journey mummy was too polite and passive and trusting. You taught her that we know best and that means sometimes we have to fight. Now mummy can fight like you and I have always been able to.

Thank you for always carrying me to the sea, for lifting me to see whatever it is my non-disabled friends are looking at, for holding me on the horse, for sitting on the floor at parties so I can join in, for facilitating my inclusion more than anyone else in the world. You are an extension of me and my life is greatly enhanced by your commitment to making sure I am where the action is!

Thank you for the laughing, the laughing until we get hiccups, the laughing through the tears, the
laughing at mummy, the laughing at life, the laughing at ourselves.

Thank you for rough and tumble, thank you for treating me like my sister, for not excluding me from tickles and rolling around on the floor, or the grass, or the sand. I bloody love it.

Thank you for being brave enough to let me have a sister, I know we are flippin hard work but I love her and I love you for bringing her into my life.

Thank you for saving the best version of yourself for me, for putting me first every time, for planning your career, your time, your day, your life around me.

Thank you for keeping mummy safe, and sane. I know that she has bad days when she feels sad and lost and scared. Thank you for lifting her up and encouraging her to fight on. She's might not be quite as strong as me and you but she does it with your help.

Thank you for being our daddy, thank you for everything that you do for us from learning all the Frozen songs in Makaton to sitting up all night just to keep me in a comfortable sleeping position.

There is nobody quite like you and we love you so so much.

Thank you Daddy.

All my love,

Your Mojo xxx

Tuesday 25 April 2017

Thank you for the Music

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I know that it won't come as a huge surprise to anyone in possession of a toddler that the word 'why' is somewhat overused in this house of late. It's a recent addition to our repertoire and continues unabated from sunrise to sunset.

The basics I can manage, why do I have to eat this, why is it bedtime, why can't I climb the furniture, why do flowers grow, why does daddy have to go to work, why do I need a bath, why can't I take your ipad as my show and tell... and so on and so forth. But then every once in a while....

On the school run, Moana soundtrack blaring

'Mummy why can't Mojo sing with us?'

Boom. That one stung.

It's not that I've not been prepared for her to ask questions, quite the opposite. We regularly talk about Mojo's legs not being same as hers and Mojo's special food tube and even Mojo's signing but it was the specificity of her question that moved me. It had just occurred to her that Mojo doesn't sing and she didn't know why.

I suppose it got to me because of all the things that Mojo loves, music is the one she loves most. If Mojo could sing, I imagine she would, just as her sister does, sing all day long.

I cleared my very dry throat and explained that just like Mojo doesn't use her talking voice in the same way as you and I, she also doesn't use her singing voice in the same way. Mojo sings in her own way.

A few days later we were all together in the car, starting out on our Easter holiday down to Devon and listening to the Mamma Mia soundtrack (don't judge me I've worked hard to wean them off twinkle twinkle and this is where we ended up!) when 'Thank you for the music' came on. Mojo suddenly became very animated, wriggled shouting and waving her arms. Then as the chorus started she signed, she signed every bloody word of the chorus. I couldn't understand how she could know it, it's not one I've taught her and then I remembered. A few weeks ago her teacher told me that Mojo had joined a Makaton Choir at school, they rehearse every week and she loves it. Now I don't know for sure but if I think I have a pretty good idea which song they are working on. It's completely perfect.

Look, I said to her sister, look, this is how Mojo sings. By the end of the holiday all of us were singing and signing Thank you for the music, including my non-Makaton using sister and her children.

Then we all sang together, and Mojo sang with us.

Tuesday 14 March 2017

Anaesthetic Angst (Again)

My youngest is very two right now. Tantrums, disobedience, wanton boundary pushing, wilful destruction. She's also simultaneously, infuriatingly adorable.

At bedtime, when she is at her most adorable, she likes to talk about what is happening next, the next day, the next week, or more often the next party. So tonight when she asked me to tell her what was happening next I led with the fact that she would be seeing her Granny and that it was because Mojo was going to hospital for a little operation. I told her it would be a busy and fun week, happy with that she went off to bed.

Ten minutes later she was shouting for me, crying and distressed.

'What's the matter baby?'
'Mummy....I don't want Mojo to go to hospital I want her to stay with me at home'

Never has a sentence uttered by a two year old nailed how I'm feeling so exactly.

Only after I'd told the story of when she was born (at a hospital) twice did she settle and accept that there was nothing to worry about. I must have used every possible derivation of 'don't worry' during my talk down.

Then I sat, with wine, and I started writing this.

God I hate surgery. I hate everything about it. The pre surgery meeting when you get five to seven minutes of face time with a consultant who has a way of phrasing things which makes you forget every question you had or that asking them would be ridiculous. 

I hate the build up, I get almost manic. Honestly, if you want something done ask me a few days before an operation and I'll have it done within the hour. The decking in our garden has needed a clean since we moved in four years ago and today I jet washed it, then I repotted six bedding boxes and batch cooked two meals. 

I say all of this in the knowledge that we have had it incredibly easy compared to many parents of children with complex disabilities. This is only her third general anesthetic and it's officially an uncomplicated surgery. My problem is that I spend my whole life managing the factors which regulate her and keep her alive and I don't like having to surrender that control. Before we even get to the surgery itself there comes the nil by mouth period beforehand. Thanks to her Diabetes Incipidous, it goes against everything I know about keeping Mojo alive to deprive her of fluids. Even in a carefully managed, clinical setting it just makes me edgy. 

Then of course there's the consent form to sign, in all it's terrifying we-promise-to-try-and-save-her-if-it-all-goes-wrong glory. 

But in the end it has to be done. 

Tomorrow I will hold her while she goes under and be there when she wakes up, and in the period between I will pace, drink tea, pray and check the flashing pager every thirty seconds (yep like the ones in the M&S cafe except at the end you get the feeling back in your body, rather than a cheese panini) 

All of this build up, adrenaline, fear and disruption is a reminder of how un-normal our life is sometimes. It also served as reminder to me of how dark my sense of humour can turn at points like this. I recently had a message from a friend asking if we could visit this weekend, I rushed out a reply saying that it would depend if Mojo recovers well. 'If she does, we will be there' I wrote. Except I didn't and in fact when I re-read it, the message I sent my friend said 'if she dies, we'll be there'. I swiftly followed it was some expletives and an explanation but it really made me laugh. Which obviously then made me feel agonisingly guilty. 

The other thing I need to be wary of in relation to procedures like this one is pinning all my hopes on it being life-changing. This adenoidectomy should assist Mojo with her breathing, swallowing, excess secretions and even her eating. If it is able to achieve even half of what we've been told might be possible it would be amazing. If it improves her sleep that would be life changing not only for her but for us. All previous life-enhancing procedures have brought with them new problems, different challenges to adapt to so I await the curve ball which will appear once the dust settles this time around.

While this update is heavy on the self-indulgent angsting the last few weeks have also brought with them some of the best proper family times we've ever had. Not least of these highlights was the weekend we cared for the school baby chickens. I made a bit of a mini vlog mostly because my family were astounded that I, being reasonably pet-phobic had agreed to care for 9 chickens in my kitchen and wanted to see how I coped! Follow You Tube link to witness our pet prowess...

Click Here for Team Mojo's Chicken Adventures

Oh and P.S. say one for us tomorrow if you're so inclined.  

Thursday 16 February 2017

Is that your final answer?

I recently took part in a parents evening for families who are going through the process of making the decision as to whether to send their child to mainstream school or special school.

I was there to tell our story and highlight the factors which led us to choose special school for Mojo. It felt strange to be asked to do it because it made me recognise that Mojo and her friends are not the babies anymore. We have successfully navigated this hurdle and emerged with a story which shifts us to expert status. It was an opportunity to help those about to begin the inescapably arduous task of securing an EHCP with the right support package for their child, in the way that other families helped us when we were starting out (although two years ago literally nobody knew what the hell to do with an EHCP form but that's another story). 
The parents I spoke to after the presentation were mostly full of confusion, stress and conflicting emotions. All very familiar things from our own journey. I could completely understand why they were feeling so torn given that I, being completely confident that Mojo is in the best possible school for her needs and is progressing beautifully, came away with concerns that I'm not doing enough to ensure she spends time with non-disabled children of her own age and what she might be missing out on by being 'in a bubble'.

In the end I came back to my Dad's advice, which as a teenager I used to think was depressingly glass-half-empty but the older I get the more I see the truth in it. He always says that nothing in life, nothing at all, is ever completely good or completely bad. We just make choices based on what we think is the best thing to do at any one time.
Parenting a child with disabilities involves so many decisions regarding care, health, support therapies and communication. I find advocating for my daughter in a world where I frequently feel out of my depth and feel like the least qualified person in the room is daunting. Trying to make the right choices for her. Desperate to get the answer right. Desperate for there to be a right answer.

Often there simply isn't a right decision. There are just decisions. Some feel like a small step in the right direction and others feel like a giant leap of faith but each one shapes what comes next and each one builds (or tarnishes) your confidence in trusting yourself to make these decisions.
While we can feel relief that we have, so far, made choices which have turned out to be absolutely right for Mojo regarding schools and education, I still find the medical decisions the hardest to come by. The sleepless nights come from worrying about not doing enough to ease Mojo's health struggles.

We recently made the choice for Mojo to have more surgery. A simple, hopefully uncomplicated adenoidectomy and grommet insertion. Why is it that the simple surgeries are the ones which trouble me the most. It's like I'm poised for something to go wrong during an avoidable procedure, one we've chosen to have to improve her quality of life, rather than a medically necessary operation. The weight of advocacy when it comes to putting her at any risk can feel a bit suffocating if you over think it. Over thinking? Me?
It may well be that it is her frustration with my decision making which has motivated Mojo's recent developments with communication. Our essentially non-verbal girl has started to become a bit of a chatterbox. The noises and squeals which have always been part of her vernacular are become more formed, more intentional. There have been times lately when I hear a word, a whole recognisable word and it's come from Mojo. She shouts for Daddy when he gets home. She answered the question the nurse asked her with the word 'sticker' clear as a bell. She has even learnt to say her BFF's name. As if that wasn't exciting enough, her fine motor skills seem to be keeping up with her vocalisation and her Makaton signing is shifting from Mojo-approximations of words and letters to sharper more obvious signs which are far more easily recognised by other Makaton users. These developments are very exciting for us. Mojo has raised a bar which I had taken my eye off, I'd been looking at the communication book while she decided she'd not given up on verbalising just yet.

In the end the choices we make only go so far and the real decision making is done, instinctively, by Mojo herself. I might think I'm in charge but ultimately it's always in her hands.