Why I’m giving up on our family tradition

So for the last 3 years, I’ve put a lot of effort into doing a sensory advent calendar with Tilly.  Partly because she didn’t really understand the excitement and anticipation of a chocolate advent calendar – in fact, she was never really interested in chocolate – so it was my way of giving her something each day that she would enjoy, and perhaps a way to anticipate and enjoy (in a small way) the build up to Christmas other neurotypical children do.

I’m not going to pretend, it’s hard work planning, organising and delivering the calendar.  I mean, 24 days of (mostly) messy activities that I have to source materials for, or make, then set up and encourage Tilly and her brother to participate in.  Then there’s the general chaos and mess that follows.  I quite like a tidy and non-chaotic house so it’s a struggle for me!

An example of what we used to do was a large tray filled with peppermint scented and red-coloured rice with tubs to pour the rice in and out of; a bath filled with a jelly-like substance that I ‘forced’ the kids to sit in and ‘enjoy’; a lightbox with Christmas themed sticky decorations; and tubs of home-made peppermint scented cloud dough to feel, mould and generally throw all over the floor.  Phew, I feel exhausted just looking at that list, never mind everything else I had planned for the 24 days!

I found it pretty difficult to fulfil last year because Tilly was at school full-time and very tired when she came home – it was a struggle to fit it in at a time where she was alert enough to engage with me. We tried, but it did slip and certainly wasn’t on the same scale as the previous 2 years.

In November this year, I had every intention to do an amazing sensory advent calendar and blog about it.  I’d set up exciting new activities, take cool Instagram photos and write a blog post each day.

We’re now at the end of 2nd December and what have I done?  Nothing!  I’ve thought about it, have felt guilty about it – but I’ve done hee-haw about it.  I’ve seen numerous ‘elf on the shelf’ posts and to be completely honest, all I’ve thought is ‘how can they be bothered?’.  My heart just isn’t in it this year!

Does that make me a bad mum?  At first I thought that yes, I’m failing, I’ve done it before, I should do it again.

But you know what, Tilly isn’t bothered.  She’s grown into a feisty little girl who is living life on her own agenda and is happy to try and communicate what she wants and needs (even if that does mean via loud moaning and whinging).  Her brother is almost 5 and not so interested in the ‘sensory activities’ we used to do.  He’d rather build hot wheels track and watch Top Gear!  Oh, and open his chocolate advent calendar.

Which brings me to today’s events.  I always buy Tilly a choccy advent calendar but she’s never been bothered about it.  Until today!  We opened the number 2  door and she devoured the chocolate and went looking for more.  In exactly the same way her brother has.  She’s not allowed it, she has to understand that it’s one a day – so with some persistence, who knows, by 24 December, she might understand the concept!

If I’m honest, at some point in every single day of Tilly’s life, I throw a bit of a sensory activity into her day.  She loves it, needs it and enjoys it.  I don’t document it, don’t take photos of it, or write about it so why should I give myself , or Tilly for that matter, the pressure of doing that during the already busy month that is December?

No, I’ve decided that from this point forward, the’ Scott family sensory advent calendar’ will be replaced with the ‘let’s enjoy the festive period spontaneously and without expectation’ approach.

I’m not going to pretend that I might bore you with some photos (Instagram even!) and blog posts but don’t be expecting them every day.  If we fancy a day off, we’ll have one.

And hopefully, that choccy advent calendar will become Tilly’s countdown to Christmas.

 

Bursting bubbles

Life with Tilly has felt quite straightforward recently.  She has had a week off school due to a tummy bug, and then an overnight stay in hospital due to suspected appendicitis, but even through that, it all still felt quite ‘normal’.

But my ‘normal’, as I have realised today, is actually a way of describing how I’ve become more accustomed to living life with a child with special needs.  It’s our little bubble.  A place where I get on with life as it is, I accept the good and the bad aspects of Tilly’s genetic condition, I don’t over analyse the situation and everything feels like its on an even keel – certainly, emotions feel steady and don’t throw me out-of-sync.  It’s a nice place to be.

However, I am still on a massive learning curve when it comes to my daughter and her developmental issues – so now and again, something will inevitably happen that will jolt me out of that safe place, and burst that lovely, safe bubble.

That something happened today.  It wasn’t significant but it was enough to make me stumble, feel out-of-sync and re-analyse how life is with Tilly and what her future might be.

It actually started early this morning when I was changing her nappy.  It suddenly struck me that “Wow, I’m still using nappies for my 7 year old daughter!!”.  A few years ago, when there was both an element of denial and of hopefulness,  I thought she would be toilet trained by the age of 7.  I mean, 7!  That’s only 3 years from being into double figures.  Surely she’ll be able to understand her toileting needs by then?  Or possibly not, as the case is likely to be.

The second jolt was at an appointment with her paediatrician this morning.  It was all going fine, the discussion was progressing as expected,  when the Dr suddenly suggested that now might be the time to put Tilly through the screening process for autism.  It shouldn’t have been a shock to me because it is a subject we have all been discussing for years.  But, in the past, we have all agreed that her developmental issues are probably causing some of her autistic traits, or at least masking them.  When she remarked that this probably is no longer the case, it felt like a punch in my stomach.

But why did I react like that?  Until I started writing this post, I didn’t understand why I felt so wounded.

I now realise that it’s not just the potential diagnosis of Tilly being on the autistic spectrum – it doesn’t change who she is – it’s that I’ve been knocked out of my safe bubble where I see Tilly for Tilly, and am (potentially) being forced to give her yet another label that society has preconceived ideas about. We were happy to be given a genetic diagnosis last year because, at long last, we had an answer for why our daughter was born with the problems she has had to endure.  I felt that describing her as having a ‘rare genetic condition’ gave people enough information, it let them understand that yes, she is a little different – but that is all they really needed to know.

I was happy to be in a place where I simply viewed some of the traits Tilly has as just ‘Tilly traits’ – however, my perspective has already switched.  I am seeing her through a different lens – a lens which leaves me watching her intently, analysing her behaviour and wondering if what she is doing is in fact a sign that she is on the autistic spectrum.

I’ve written in a previous post about how I spent the majority of my time as a new mum to Tilly analysing, worrying and googling.  Sadly, I think that the time between now and her assessment (which could be months away!) will result in that behaviour returning once more.  I’ll be back to searching google like the crazed mum I used to be!

Deep down I know that she is on the spectrum, and always have, but even I have preconceived ideas of what autism is and how it looks.   And although I know a few boys with autism, I’ve not yet met any girls.  I don’t fully understand the bigger picture.

So I guess I have to figure out how to arm myself with enough information to understand how girls on the spectrum are affected, what extra support is available, new therapies we can try and connect all the dots to give Tilly the best support we can.

Then I have to move on, let the worry and analysis go – and return once again to seeing Tilly as Tilly, rather than a label.

And hopefully I’ll then find that we’re back in that lovely, safe bubble again.

 

 

 

 

 

How I met my best friends

As I walk along the street with my (almost) 5-year old son, I see two heavily pregnant women on the other side of the road.  I guess from the way they are speaking to each other in a friendly but polite and slightly uncomfortable way, that they have recently become acquainted – and from the folders they are carrying, I also guess they have just left an antenatal class.  New mums-to-be, perhaps on the start of a new friendship journey.

It immediately takes me back to 2009 when I was pregnant with Tilly.  My first pregnancy.  A pregnancy filled with trepidation and joy.  The grief and sadness I felt then hits me once more like a blow to the stomach.  For that moment, those feelings are still there, as powerful now as they were then.

A time when I longed to be a pregnant thirty-something without the worry of delivering a child with heart defects;  and later, of a new mum without the sheer panic of being told something was wrong with her child, and without the ensuing slog of tests and hospital appointments.  A time when I longed to be meeting the new mums I’d met during my antenatal classes for coffee & cake, to share our stories of sleepless nights and life adapting to a newborn, and to tentatively step into the world of baby & toddler classes with them by my side.

But as I sit here writing this now, those sad feelings have drifted away again (replaced by other challenging feelings – they never disappear in Tilly’s world!).  And I now remember how lucky I was that during that dark period of being Tilly’s mum through her first years, friendships with those new mums had been formed.  I wasn’t able to nurture them in the way that I had hoped but they were a small group of amazing women who were patient, funny and understanding.   They didn’t expect me to make it to every play date, they didn’t get upset if I cancelled a coffee meet-up last-minute, or if I was pretty rubbish at reciprocating our friendship.

They were there when I needed them on my journey with Tilly – and I’m lucky to be able to call them my best friends 7 and a half years later.

 

A Road Well Travelled

Why does being a parent of a special needs child have to mean a lifetime of tough decisions, fights and guilt?

As if having a child with health worries, developmental delays and a multitude of other concerns wasn’t enough for parents to cope with, we also have to become the decision-makers on many (if not all) milestones in their lives.  And most of those decisions are made over subjects that we’re no experts on (but we do have to become as well-versed and informed as we can be).

For example, for a typical child, the path of education is a well trodden one.  We know that when they reach a certain age (actual age depends on which country you live in), they enrol in school and begin to learn from a curriculum that has been carefully built by professionals, tested and used with success for years.  It will have been tweaked and continually monitored to ensure that it is the best and most suitable curriculum it can be.  You enrol your child in school, you have the excitement and nervousness of their first few days, then they settle into their new routine and follow the path that has been mapped out for them.  There may be some hurdles along the way, frustrations with teachers, issues with certain policies, conflicts with other children – there will always be bumps on the road – but the decision-making process for where your child will attend school, what they will learn and who will work with them along this path, has already been made.

For a parent of a child with special needs, it’s not so simple.  The big debate is whether to send your child to mainstream school, and with that comes the fight of getting 1-1 support if you feel it’s required, or to a special needs school.  This sounds simple enough but there are so many different factors to take into account.  For many of our children, it’s not a clear-cut decision.  There can be advantages and disadvantages to both – and it is a situation that must continually be monitored to ensure that the decision you made in the first month, is still the best one in the third month, sixth month and so on.

What if you can see benefits to each of the options, and are stuck with what direction to turn next?  What if you desperately need advice from the ‘experts’, the professionals who have lived and breathed educating a child like yours and can describe the successes and failures?  But what if you can’t find that expert, that professional, because nobody has encountered a child like yours before, and they don’t know what the best option is? You have to become the ‘expert’, you have to become the decision-maker on the path your child should make with their education – but other than your own education (decades ago!), you have no other experience in the world of teaching and schooling.

What if you look at all the options and feel that a mix of each of them might be best suited to your child?  But what if you are then presented with a barrier because your child doesn’t quite meet all the criteria for the input from one of the education options?  What if the next step is to fight for something you hope will be a good cocktail of education methods because it’s what your gut tells you.  It could be a wasted fight because your argument might fall on deaf ears and not actually come to fruition; or your fear that what you’re fighting for isn’t actually the answer might become apparent and you feel like you’re wasting yours and everyone else’s time.

Deciding the best path for your special needs child is incredibly difficult and exhausting.  And it comes with very little guidance and support.

We’re into year 2 of Tilly’s primary education and although we’re happy with how she’s developing, and how she’s coping, we are questioning when the right time to move her from mainstream schooling (with full-time support) to a more specialised schooling  approach should be.  She’s happy, she’s busy and she’s managing well – but we know that there are areas of her own particular development path that could be met in a better way at a specialist school that is attached to her mainstream school.  BUT…getting access to that school is not straightforward.  There is strict criteria to be met (which I’m sure Tilly will fail) – and I’ve heard that it is a fight that has been lost by many parents before me.

There is another option for her which is a 20-30 minute car journey away (not fantastic for a girl who can get car sick after 5 minutes) but my gut instinct tells me its not the best place for her – not yet anyway.  The benefits of mainstream schooling still outweighs this option.

So what do we do…settle for what we have, send her somewhere I don’t yet feel is right for her or fight for what we hope will add that little something extra, something that could nudge her development along that bit further?

There is only one answer.  I will fight – like I always have.  I’ll give it my best shot, I’ll get prepped, will get my case ready to present.

But seriously, why does it have to be so damn hard?  We need a break, we need our role as parents of special needs kids to become easier.

We need someone, somewhere, to make it easier.   A road well travelled.

 

 

 

 

Helicopter mum

The schools return tomorrow – hurrah!!

Don’t get me wrong, I’ve had lots of fun with the mini-Scotts but jeez, my daughter is becoming such hard work.  She’s developing at a rate of knots which is great on one hand, but on the other hand, I’m exhausted, a little exasperated and to be completely honest, terrified.

Exhausted – she is on the go constantly.  She really is like an overgrown toddler.  I remember that stage with her little brother but my saving grace was that he was small enough to lift up and move, and he still had a couple of naps each day.  Tilly is 7, and thanks to a healthy appetite, has gone from a skinny little girl to a solidly built girl who can proudly stand next to other 7-year old girls and not look out of place.  But picking up a naughty 7-year old isn’t an easy task.  My already broken back can’t cope with it.  And like most other 7-year olds, naps are a thing of the past.  This girl has energy!  If I put my Fitbit on her, I’m convinced she’d out-step me most days.

Exasperated – during toddlerdom, most parents realise they have to inject some discipline into their child’s lives in order to tame the most wilful of toddlers.  I had one of those wilful toddlers in Tilly’s brother so I dipped into a couple of books to get a little bit of advice and direction.  It didn’t take long because I worked out what did and didn’t work – as his communication and understanding improved, it was easy to use ‘friendly threats’ and ‘mini forms of blackmail’ to get him to listen and improve his behaviour.  With Tilly, her communication and understanding is still extremely delayed so many of those tried and tested tactics are completely lost on her.  As far as I know (my google investigations haven’t been fully explored), there isn’t a book I can refer to for tactical moves on this one.  So, after a week of school holidays, and her naughtiness testing me to the limit, I feel infuriated with her – and annoyed with myself for not figuring out a solution.

Terrified – just when you get used to the path that you’re travelling down, an unexpected bend suddenly throws you into a completely different direction.  You feel lost, scared, alone and worried about where you’re going to go next.  That’s where I am (again!) with Tilly.  Her personality is becoming more apparent; the diva-like behaviour I’ve heard friends’ with daughters talk about is beginning to emerge and the sheer determination she has shown throughout her 7 years, a trait I was incredibly proud of, is actually causing me problems!  Tilly and these development leaps that she keeps making are throwing me off-kilter – and it terrifies me.  What if I don’t find a way to adjust to her and her new ways, what if it gets worse and I lose control of her behaviour?  What if I find it more and more difficult and need extra help?  What if I can’t cope with her by myself? What if her new adventurous and brave tendencies cause her to have an accident?  She’s tall enough and inquisitive enough to reach for most things on the kitchen worktop, such as knives, pans of boiling water – its not happened yet but is it going to happen one day when I’ve turned my back for a few seconds?  I will try my best to scan the room we are in for potential hazards but what if I miss one? What if her new skill of opening the front door and having a stroll in our garden results in her one day (on a day I’ve forgotten to lock the door)  walking onto the road outside our house and not seeing a car, or going further away from the house without me knowing?  I will protect her and ensure that I’ve made her environment as safe as I possibly can but what if she catches me out one day?  What if something else needs my attention first and I’m not quick enough to catch her in the act? I’m not a helicopter mum to her brother and I can see how his independence and confidence grows the more I let him try out things by himself – but I will have to be (no, I am!) that type of mum to Tilly.  I don’t have an option.  There were areas of our house I would be happy with her going to by herself because I knew she wasn’t able to, or wasn’t interested in opening drawers, doors, cupboards.  She wouldn’t attempt to climb. But she is doing all of that and more now – her motor planning skills are improving (yay!) but she can now figure out how to open the bathroom door, lift the toilet seat and stick her hands in the water (no!); how to open drawers and pull things out.

Until her development in play begins to improve, and she no longer finds it fun to play with objects she’s not meant to touch (is that purely exploratory, or is there an element of her knowing that it annoys her mum??) I will have to be that helicopter parent and shadow her every move.

In the meantime, I will continue to experiment with ways of disciplining her so that she understands what is right and wrong; and what is dangerous and safe. The cheeky smile she gives me when I tell her off, the giggling and the way she returns to the crime scene whilst giving me those knowing glances all lead me to believe that her communication and understanding are way better than I give her credit for. Wish me luck!  I’m going to need it.

The next chapter

I’m not really sure where to start with this post.  But I’ve wanted to write about something for a little while now, something that I think has been the cause of me feeling a little low for a few weeks.

This may end up being a rather self-indulgent post as I don’t intend to write about Tilly – I want to write about me.  Because I, Tilly’s mum/carer/part-time therapist/spokesperson/advocate, also have needs and issues that have become part and parcel of this different journey that we are feeling our way through.  I want to write this post because there might be some mums out there who are further down the road in their journey than I am who can provide some inspiration, motivation, encouragement to taking a leap on to my next path.  But also, to the mums out there who are where I was a few years ago, or who are feeling like I do now – lets share our stories so we know we’re not alone.  Lets encourage each other to have the courage to take a small step away from our roles as carers to rediscovering who we are and what we are good at outside of the realms of caring.

A little bit of background

Before I fell pregnant with Tilly, our first born, I had a decent job in Marketing.  In fact, I had just been given a promotion that I’d campaigned for and was feeling positive about the future of my career.  But my pregnancy wasn’t a straightforward one and was fraught with fear (we were told at our 12 week scan that something wasn’t ‘right’ with our baby, which led to numerous tests and resulted in us finding out that she had a heart defect) and pain (I suffered from symphysis pubis dysfunction, or ‘SPD’ from around 5 months –  walking hurt, climbing stairs hurt, standing, sitting, lying down, everything I did hurt).  My job suffered as I had to take time off for tests, and as the SPD pain worsened, I had to admit defeat and, at 6 months, was signed off work for the remainder of my pregnancy.

When Tilly was born, we were thrown into a world that we had no idea we were about to enter.  She was born at 10.30pm on 1st July 2009 – we were told before she was born that they would have to take her away as soon as she arrived to give her a good check, due to her heart defect.  We were in such a state of delirium & exhaustion that when she was born, we didn’t even notice that she wasn’t breathing – it wasn’t until around 4 weeks after her birth we noticed on a letter from the Consultant Paediatrician to Genetics that she had to be resuscitated.

The next day was the day that the future we had dreamt of having with our baby girl was turned upside down.  A consultant pulled us into a small, dingy side room (well, eventually he did – the delivery of his bad news began in the ward during a very busy visiting time until he realised that perhaps it wasn’t the best place to break bad news to new parents!!!).  He proceeded to tell us that he didn’t know what it was, but he felt that there was something seriously wrong with our baby.  He talked about her heart defect, her talipes (club feet), dysmorphic features (I still hate that word but basically it means features that are abnormal from a typical baby) and how he felt there was something wrong with her genetically.  We were utterly devastated, and the scarring from that day hasn’t healed – at a time when new parents are bursting with pride and excitement, when hormones are all over the place and exhaustion from the previous 36 hours has set in, the way in which this doctor broke the news to us still makes me angry, sad.  In fact a whole range of emotions that I wish I didn’t have to feel.  He completely destroyed a time that new parents should relish.  And sadly, what followed over the next few years was a journey of fear, suspicion, sadness and worry.

I could write a novel about that time of our lives but thats not what I want this post to be about – maybe I’ll write more about it some day!

This is about how what happened next, led to my career being abandoned.

But not immediately.  I did return to work when Tilly was around 14 months old, and although I tried hard to focus on my role, I had to take a significant amount of time off for hospital appointments and illnesses (she caught every little virus going in those early years).   After a few months, I then decided to take some unpaid leave to focus on Tilly’s development – she was still very behind on milestones, still being tested to find out what the bigger picture was, and I felt an immense amount of guilt going to work and leaving her.  I was her mum, I should be at home doing everything I could to help her develop.

After a couple of months of being at home with her, I discovered that I was pregnant again – a complete surprise as at that time, we didn’t think we wanted to have another child.  But sometimes, I believe, things are meant to happen.  And that ‘thing’ was Tilly’s wonderful little brother, Elliot.  He was born without any heart defect, any abnormal features – he was a healthy, hungry baby boy.  And he allowed us to experience that new parent feeling in hospital that we always felt we missed out on with Tilly.  But it was bittersweet as it amplified how awful the experience with the paediatrician was.

Anyway, fast forward to Elliot’s 1st birthday.  I had planned to return to work after his 1st birthday because it was what I always expected that I would do after having a family.  Since leaving school, I had worked and didn’t expect that having children would put a halt on my career.  However, several changes had happened in the department I worked for and I was called into a meeting to discuss my role.  I was told that I wouldn’t be returning to my previous Marketing Communications job that I’d worked so hard for but I was being offered a role similar to one I had done at the start of my career 10 years previously.  I felt betrayed, angry, discriminated against and went straight to the union rep to discuss my options.  To cut a long story short, I was offered voluntary redundancy .  As they refused to give me my old job back , I took the redundancy and walked away from the career I’d had for 10+ years to focus on raising my children, and became full-time carer to Tilly.

And here we are now…

Tilly is now 7 years old, in mainstream school 5 days a week, settled and happy.  For the first time since before I was pregnant, I feel that I can start stepping back from my role as carer for a few hours each week – and perhaps I can get myself some work again!  The extra money would certainly be good.

But I’m stuck, I don’t know where to turn next.  I’m not sure what type of employee I’d now be – my eyes have been opened to a different way of life, to a life that has more meaning than the one I’d lived before Tilly & Elliot came along .  I don’t think I’d tolerate the ‘office politics’ that were such a big part of my previous job; I would need time off for hospital visits and appointments; and I would need a large degree of flexibility to allow me to continue with caring for Tilly outside of school.  It’s easier with Elliot – he would easily cope with breakfast clubs, after school clubs, holiday clubs, playdates with friends, sleepovers etc if I had to be at work.  But with Tilly, that isn’t an option.  I would have to find specific care for her, and sadly, that just isn’t available where we live.

Whereas many of my counterparts have been able to return to work, I’ve found it difficult because Tilly’s needs were and will continue to be greater than children her own age, or significantly younger – Elliot, at age 4, is already way more independent than his sister.  I feel I’ve been left behind and am scrambling to catch up.

I’m now in my forties (early!), my confidence has dipped, my CV isn’t as good as it used to be and I’m still a carer to my daughter with additional needs.  But I want to be more than her carer, she deserves more than that, as does Elliot, so I’ve got some more avenues to explore.  I’m sure that there must be something out there, something I can do for myself – I’ll just have to keep looking so that I can start the next chapter of my own journey.

If you are reading this and any of it resonates with you, please get in touch, I would love to hear from you.

 

 

Broken hearts

I’ve wanted to write a post about Tilly’s open heart surgery for a while now – mainly to remind me, and those close to us, how far Tilly has come since the time she was a poorly little baby and in heart failure.

My memories of that time are pretty vague.  It was 7 years ago – in fact, her ‘heart day’ is coming up as she had her surgery on Tuesday 29 September 2009.  But even though it was the scariest period of my life, I just can’t remember how I felt during that time.

I’ve found emails I sent to my husband, or to friends in the time leading up to her going into hospital which I hoped would trigger some memories of how I felt.  But even those are actually quite devoid of emotion – matter of fact and explanatory but with the absence of the feeling of fear and dread I would have expected from a new mother whose 3 month old baby girl was in heart failure and requiring life-saving open heart surgery.

I think I was in a bubble – perhaps it was the hormones of being a new mum, and one who was faced with many fears from the moment her daughter was born, but I wasn’t aware of the reality of the situation we were about to face.  I always said that it was because I knew she needed the surgery to fix her, that without it she would die.  But if I think back to how I was at that time, I don’t actually believe that the prospect of us losing our daughter had registered with me.

In the main, I put on a brave face in the hospital – I was the parent who carried her into the little room for her anaesthetic and watched her go to sleep before 9 hours of surgery because my husband  broke down on the walk to the operating theatre and couldn’t do it.  I was the one who strode into ICU after her surgery, didn’t shed a tear when I saw her lying there hooked up to what felt like hundreds of machines that made different beeps every few seconds and asked the nurses a whole of questions.  In fact, other than the few tears I do remember shedding when I walked away from the operating theatre, I don’t remember crying.  I don’t remember how I felt.

My coping mechanism was to put up a very thick wall to protect myself from the emotions that would have been thrown at me during such a traumatic and scary time.  That wall didn’t get ripped down until a good couple of years ago and it’s only now I can sit and look at these photos of my little girl and feel a little of how I was probably feeling then but was too scared to express to anyone, including myself.

I feel an immense amount of sadness that my daughter had such a difficult start to her life; that in those early months, she spent so much time at hospital getting test after test; and that her little heart was struggling to keep her alive.  I feel desperate to hold and protect the little baby in the photos and make everything OK for her, to take the pain and suffering away.

I feel the fear of walking into that operating theatre and laying my crying baby girl on the bed. Of watching her being put to sleep by the anaesthetist, knowing that her heart would be stopped and her rib cage opened up so that the surgeon could get to work on a meticulous 9 hour operation to mend her broken heart.

I feel the desperation of walking aimlessly through Kelvingrove Park and Kelvingrove Museum with my husband, unable to find a distraction for the anxiety and agitation caused by the helplessness we felt during those 9 hours.  I feel the eery silence of our room in the parent accommodation at Ronald McDonald House during the final hour of waiting for news that the surgery was over.

I feel the urgency of answering the phone when it rang, the anticipation of listening to the nurse give her quick update, and the immense relief on hearing the news that the surgery was successful and she was stable in ICU.

I feel the nervousness of walking into the ICU and the uneasiness and heartache of seeing all of the severely ill children in the unit, some who had been there for months and some who were not expected to leave.

I feel the shock of seeing my daughter lying there on a life support machine  with cables and lines protruding from all different parts of her body.  I feel thankful and incredibly lucky that such a wonderful surgeon and team of doctors and nurses saved my child.

I feel love, sadness and happiness all at the same time.

The story of Tilly’s recovery from her surgery has been told before – in short, she lived up to the meaning of her name Tilly, Mighty Battler, to be moved from ICU to high dependency after less than 48 hours and to be sent home after another week.

Her scar, a little heart defect that hopefully won’t require such major surgery in the future, and these photos are the only remnants of that time of our lives.  And, hopefully, when I try to remember how I felt this post will tick that box.

My favourite picture of Tilly just after she got home from life-saving open heart surgery.

Inclusion

We’re now into week 3 of a new year at Primary School – and Primary 2 is suiting Tilly well so far.  She’s adapting to a new classroom, new pupils and 2 new teachers.  Its obvious from how happy she is going into school that she’s pleased to be back, as am I!!

This year, the school are planning to challenge her more, push her to try new things (using a paint brush for longer than a quick dab, for example) and they will create a bespoke development plan with individual targets for her to aim to meet.  I’m fully supportive and keen to take a role in helping them create her development plan – we don’t know how long mainstream school is going to suit her, but while it does, and while she continues to be happy, we’re going to push her as much as we can.  She’s made big strides in many areas of her development over the last year so we all feel she’s ready to continue down that path.

One of the changes for this year is to get her involved in after school activities.  It’s something I’ve avoided in the last year for several reasons – firstly was her stamina.  The wee thing collapsed in her bed for a chill most afternoons in the first few months of Primary 1 so she couldn’t have coped with an extra activity after school.  The second reason was accessibility.  Despite asking about after school activities, I never felt it was met with an open mind from the activities co-ordinator, or other class instructors.   And thirdly was fear.  Sadly, I felt scared and nervous (and still do to an extent) to take Tilly to an activity/class/party/event where I knew that her inability to follow instructions or to communicate, her sensory issues (the lights she could look at, the speakers she could hug, the blinds on the windows she could rattle etc), in fact all of her ‘differences’ , would be glaringly obvious to everyone and be met with stares and whispering.  I worried she’d get in the way.

But her stamina has now improved and most days when she gets home from school, she has a bath (she demands it!!) then is full of beans either playing in her bedroom or in the garden.  There has also been a shift in the instructors’ way of thinking, as a couple of classes have been suggested that we hope will interest Tilly.  And I also think its about time we tried her in these classes – why should she miss out?

Her first class, Hip Hop, was tonight and she loved it!  Admittedly she didn’t do any of the dance moves, she tried to climb onto the dance teacher’s knees whenever he was on the floor (she loves a cuddle), and she dragged him to the iPod whenever there was a pause in his music.  But her face was beaming throughout and she loved watching the other children almost as much as she loved watching herself in the wall of mirrors!

As they are with school, Tilly’s learning objectives in the dance class aren’t the same as they are for her class mates.  She’s not there to learn the dance moves and to do everything the teacher asks.  She’s there to have fun, enjoy the music and movement (in her own way), and to watch and learn from her peers.  She may not show it yet but she’s observing all the movements the other kids are making and who knows, one day she might do a jump or side step.  But in the meantime, she’s being included in an activity that her neuro-typical classmates have automatic access to.

Just because she has a learning disability, I don’t think it’s fair that she misses out on an activity she clearly enjoys.  Inclusion is such an important part of her development and I hope that other classes/instructors/teachers will also open up whats on offer to more kids with disabilities.  They may not think those kids are learning but trust me, in their own way, they are.  And, at the end of the day, if that child is happy and having fun, surely thats the most important thing?

Next up this week is Cheerleading.  More music, dancing and….poms poms.  A dream come true for a girl with a strong sensory passion for tactile toys!!

 

Pu-dding

I notice your eyes and your beautiful smile.

They are for me.  You have made perfect eye contact.

You look at my mouth, still smiling.

You wait in anticipation because you know I know what you want.

I say the word. Pu-dding.

You look at me and smile because you know I know that’s what you want.

I will you to make the small movements of your mouth.

To form the ‘pu’ then the ‘dding’.

I see you watch me.  I see you watch the movements my mouth can make.

Your mouth moves.  Are you going to do it?

A part of me begins to surge with excitement, a glimmer of hope.

I say it again.  Pu-dding.

Your smile fades.

You become agitated. You wriggle in your chair.  You want down.

You’re frustrated because you know I know what you want but I’ve not given it to you yet.

You know I want you to say it.  But you can’t.

You can’t say the word. ‘Pudding’. Or ‘Mummy’.  Or ‘Daddy’. Or ‘I love you’.

Maybe tomorrow.  There is always tomorrow.

 

 

Respite

As much as I love spending time with my girl, I’d be lying if I didn’t say she was hard work.  The bigger she gets, the more development steps she makes, the more confident she becomes naturally equates to a very happy and proud mum – but also a more physically and mentally exhausted mum.  Especially during the summer holidays.  The long summer holidays!!!

Those of you lucky enough to have children will remember/be experiencing/be getting ready to go through the toddler stage where those troublesome tots have to be watched every minute of the day.  If they’re not, they can get into all sorts of bother – think of all the photos shared on Facebook of kids (and entire rooms) smothered in Sudocreme, or standing amongst the debris of a smashed plate/ornament/cup.  Or pulling every baby wipe out of it’s packet; or putting stones from the garden in their mouths; or dangling mummy’s bra (or as Tilly’s brother calls it, “Mummy’s boobies”) down the toilet that the other child in the house has just done a wee in.  Or throwing things (a precious framed wedding photo for example) down the stairs because they want your attention.  Or figuring out how to open the front door and taking themselves out for a walk to the pavement, and almost onto the road.  Or throwing a glass lamp on the ground and smashing it.

You get the picture – toddlers can be hard work!!

Well, we have one of those in our house, only she’s in the body of a 7 year old – a body that is growing taller and increasingly stronger by the day.  A body that can now reach things that most toddlers can’t, a body that is becoming incredibly difficult to lift when she decides she doesn’t want to go where Mummy tells her and plonks herself on the ground.  Or who decides she doesn’t want to stand up to get dressed, or won’t compromise by standing up ready to be lifted out the bath when all the water has disappeared down the plughole (and instead finds it hilarious to lie down so that Mummy has to bend over and try to lift her out).

Add to this that our  “7 year old toddler” hasn’t yet managed to use words to communicate, struggles to understand as many words as her Mummy would like (to make both their lives a bit easier) and can be knocked off balance if her sensory world becomes too much for her – and the result is a pretty knackered old mother with a rather dodgy back!

It is all part and parcel of living in ‘Tilly’s World’, a place I’ve grown to love – not the one I expected to be in when I became a mum, but over the years have enjoyed getting to know.  But a world I need a break from now and again.  My body and mind need to relax for a little while so they can recharge their batteries ready to tackle it all again with the full gusto it deserves the next day.

So I’m extremely lucky that, after a lengthy process, I was offered respite via our local authority and social work department.  They provide the funding for someone to care for Tilly for a few hours each week to give me a break/catch up with things I find difficult to do with Tilly in tow/spend time doing things her brother enjoys but she doesn’t.

It has taken me a long time to get over the guilt of ‘sending’ my daughter away to be looked after by someone else – another thing to add to the sense of failure I used to feel in the early years when I evaluated my skills as a mum.  But I now look forward to our respite days.  And so does Tilly.  In fact she is positively glowing when our favourite person  (you know who you are!) turns up at the door to take her away for a few hours.  I’m not going to pretend – but I am too!!

I now push away the guilt and enjoy the precious few hours I’ve been given – its a service not everyone is lucky enough to receive.

So if anyone out there reading this cares for someone in their lives who needs that extra bit of help, and is struggling with how much they have to manage by themselves, I would urge you to contact your local authority/health visitor/GP to talk about respite.  If there’s a chance you could be offered it, fight for it.  Go through the long process to apply for it and take what you deserve.  We are all doing great jobs as carers but in order for us to do our jobs properly, we need support too.

I just wanted to write a final paragraph about the wonderful lady who provides our respite She also works with Tilly at school so they know each other really well.  I trust her to not only look after Tilly but to interpret her signs and signals as well as I can, and to give her the right balance of affection/space/discipline/encouragement – whatever Tilly needs.  As a family, we feel so blessed that she has come into our lives.