Unlocking the potential

It’s been over a week since we took Tilly to Perth to visit Brainwave (http://www.brainwave.org.uk) and if you’re following my Facebook page or this blog, we’ve been a little bit quiet.

It’s not because the day went badly, quite the opposite to be honest. Their professional input was fantastic and they’ve given us some exercises to try at home and at school, and lots to think about. Probably too much, which is why I’ve been so quiet – my wee, wine-impaired brain has needed time to process everything we discussed.

And if I’m completely honest, I’m a little bit flat as a result of our visit. Not because of Tilly – the difference in her understanding and whole demeanour between this visit and her last one a couple of years ago was amazing! It made us realise how bloody far that little girl has come. Hubby and I shared a lot of little looks that we knew meant “Wow, is she really doing that?!”. We couldn’t help but feel a wave of pride as we watched her not only cope with the therapists pushing her, but positively engaging with them and following their instructions.

But why am I flat?  Well, they highlighted some pretty important areas where Tilly needs work.  Without getting too technical, some of the challenges she faces every day with her movement (stepping on/off kerbs, going up and down stairs, lack of ability to climb) are as a result of her body always being in extension, rather than flexion.  When we move around, we will naturally bend forward a little, or rotate our bodies to look around and help us move – this is called flexion.  When Tilly moves from a normal standing position or a simple walk (e.g. if she’s stepping onto a kerb), she leans slightly backwards.  This is her in extension.  As a result, the sensory input her brain receives (visual, vestibular, proprioceptive) throws her into a bit of a panic, or fight or flight mode.  You try walking up the stairs when you’re leaning backwards – for a start you can’t see where you’re going, you feel disorientated and like you’re going to fall backwards.  Tilly spends a lot of time in this position!!  As we’re not trained in Sensory Integration – nor are any of the therapists she sees (sporadically) – we didn’t notice this and had no idea it was causing SO many of her problems.

And this links into why I feel flat.  Throughout Tilly’s life, we have seen a multitude of therapists, doctors, consultants – whatever you want to call them.  We’re currently going through another stint of appointment after appointment – we had a visual expert a couple of weeks ago, and have neurology and audiology next week.  And the splint she wears on her left foot has suddenly become too tight (my little girl is getting big!!) so I have to get an urgent appointment to see Orthotics.  But through so many of these specialists, sadly very few of them have had useful and researched advice or help for us.  We thought it was because she was undiagnosed – but since being given her diagnosis last year, it’s made no difference whatsoever.  They don’t know what they’re dealing with, and because Tilly is generally a calm and happy little girl, we get a bit of sympathetic chat then sent on our way.  They don’t have a text book answer for how to help her so we’re left in the dark, and have to get on with it.  But I’ve always known there is so much more that we can do to help her progress, and going to see people like Brainwave confirm this.  One of the ladies we saw is an Occupational Therapist (OT) who specialises in Sensory Integration (SI).  She was as frustrated as I was that we don’t have an OT who is able to do real SI work with Tilly – by real, I mean a space that is set up with SI equipment that would challenge Tilly, and help her sensory processing system integrate in a more typical way.  By unlocking her sensory processing difficulties, it might allow her brain to focus on the things we take for granted – such as communicating!!

I feel flat, frustrated, angry and very very stuck.  I know there is a therapy out there that could really help my daughter but I don’t have any access to it.  There is an OT who is ‘meant to’ see Tilly at school.  So far, in her first year at school (since August 2015) she’s seen her about 4 times?  I know she sees other children in the school more frequently but because Tilly is a more difficult and non-textbook case, she mysteriously misses a lot of the appointments she has scheduled with her.  I’ve also googled it and the closest OT who specialises in SI is in Perth – for a girl who can get car sick after a few miles, its just too far to travel on a regular basis.

In the meantime, I’m going to try my hardest to fit in the little changes Brainwave have suggested and do what I can.  I know her school will help support us too but it doesn’t stop me wondering, what if?

So in the next few days, I’m going to work my frustrated and angry frenzy up into something a bit more productive and start pushing back (again!!) on the therapies we have access to.  If I don’t fight for Tilly, who will?

If anyone reading this happens to have any knowledge of Sensory Integration nearer to Edinburgh, then please, please get in touch.  We’d love to hear from you – I know that Tilly has so much potential, we just need to find more ways we can help unlock it.



I don’t have a typical mother/ daughter relationship with Tilly.  She’s not interested in make-up and nails…she doesn’t even understand what they are!  She’s not particularly bothered about what clothes I dress her in (but she does get a bit excited if there’s a bit of frilly chiffon on a dress).  She isn’t able to go to dance or ballet classes; she’d probably love to as she loves music and watching other children dance, but because she can’t follow instructions, its sadly not an option that has been made available to her. We aren’t able to talk about what she’s doing at school, or who her friends are and arrange sleepovers with them. We don’t even have play dates with anyone.

But this isn’t a woe is me post.  This is a celebration of the most magical, amazing mother/daughter relationship that Tilly and I have.  She can tell me so much through the way she looks at me, guides me or touches me.

I love the way she gets excited when I say to her after breakfast at the weekend “do you want to go to Mummy’s bed?” and she grabs my hand, pulls my hand for me to help her upstairs and pushes me into my side of the bed.  She then climbs in, pulls the duvet over us both, cuddles in and does a contented little wriggle together with her signature magical smile.

When we’re doing her Gemiini therapy, not only is she fully engaged with the videos, but she now looks to me in anticipation when the video asks “what does a lion say?” because she knows that I’ll tickle her and shout “Roaaaarrrr”.  It’s always followed by a proper belly laugh.

If she knows I’m getting ready to go in the shower, she’ll lead me into the bathroom and help me get undressed because she’s telling me she wants to come in too.  And when I’m out and putting body lotion on, she’ll help rub it into my legs.  She’s always right there beside me, watching what I do.

Or the way she always greets me first thing in the morning when I get her up – the way her face lights up, the way she looks at me reassures me that above all else, she’s a very happy girl and feels loved and safe.

And although she’s never been able to actually say the words, I know that she loves me.  Her eyes tell me so every day.


Food, glorious food!

imageTilly’s been on an eating mission these last few days.  She can’t get enough of food.

It is one of the most wonderful, amazing and satisfying sights I have ever seen.

You see, from the day she was born until about 3 years ago, Tilly’s eating habits were awful.  She didn’t want breast milk, formula, or solid food; none of it interested her.

When she was born she didn’t root for my boob, she didn’t do that wide open mouth thing newborns do when they’re hungry.  I tried so hard to get her to latch on, but she wouldn’t.  So I sat on my bed in the post-natal ward with the curtains drawn, trying my hardest to squeeze out colostrum from my achey boob into a tiny syringe so that she could get some of the baby superfood my midwife kept banging on about.  After collecting 7ml, I got her into position in my arms and carefully dispensed the liquid gold into her mouth – only for her to spit it all out.  I tried it again and again, only for the same thing to happen.

The consultant who broke the news the day after she was born that he thought something was ‘seriously’ wrong with our daughter said that one of the issues was that she didn’t have a sucking reflex.  He told us that if she didn’t feed soon, she’d be taken down to the neonatal ward and we wouldn’t be able to take her home anytime soon.  He said some other gut-wrenching words that will forever stay with me – words that sadly resulted in the unbreakable mother/daughter bond I should have had with my first baby taking a while longer to fully develop than it should have.  He put doubt in my mind about what was and wasn’t ‘normal’ and meant that rather than seeing my daughter for who she was, and enjoying her, I continually watched her with a degree of suspicion.  I saw a movement or a jerk and wondered if that was another thing to add to the list of things wrong with her.  Google became my obsession – if the doctors couldn’t tell me what was wrong with Tilly, then maybe I’d be able to find out myself!  Of course I was (mostly) wrong on that one, and only got myself tied up in more knots.

Back to the lack of a sucking reflex!  One of the lovely midwives who tried so hard to comfort us in our little room in the hospital (due to the state we were in after the consultant left us, we were moved to a private room) suggested we try to prove him wrong and see if she would suck from a bottle.  I felt like a failure already and for her to suggest we give her formula instead of breastfeeding only made it feel worse – those antenatal classes had a lot to answer for!!!  But we agreed as it was either give into formula, or watch Tilly get moved into the neonatal ward.  So she brought a tiny bottle of formula to our room and we watched as she held Tilly, put the teat into her mouth and we could see tiny bubbles appearing in the bottle.  She was starting to suck!  She didn’t take a lot…but she could suck!  And if she could do that, the outlook wasn’t quite as grim as the consultant had made out.  When we saw him again and told him the good news (showing him an imaginary middle finger), he was surprised but did confirm that if she continued to drink milk, then we’d be able to go home.  We had to try really, really hard to get Tilly to take more than a few sucks of milk at a time.  She just didn’t seem hungry.  But our persistence paid off as at 4pm on the 4th of July (only 3 days after she was born), we were allowed home.

Unfortunately the feeding nightmare was only just beginning.  Her reluctance to take milk continued and it became an awful situation for all 3 of us.  Andrew and I had to take it in shifts to attempt to give her milk because having her squirm and turn away from the bottle every time we tried was soul destroying.  Why wouldn’t our baby eat?  I began to watch how much she wriggled around uncomfortably before, during and after each feed – she seemed to be in discomfort.  My friend Mr Google suggested that she might have silent reflux.  That diagnosis was poo-pooed by both her health visitor and GP, so we had no choice but to continue trying and trying (in vain) to get her to take milk.

She was slowly losing weight, but we kept trying and did succeed to get the smallest amounts into her.  Little and often seemed to work best – but we had to do it round the clock as she was taking so little at each feed.  We found she fed best when she was asleep, which meant during the night, which meant when we should have been sleeping.  But it worked, she was more relaxed during a ‘dream feed’ and we managed to get most of her milk into her during the night.  It was another reason I still believed she had silent reflux.

At just over 2 months old, I noticed that Tilly was getting more tired, looked pale and blue and had little energy to drink milk.  It was such a struggle to get anything into her.  I was worried.  I eventually called her cardiologist to express my concerns.  He wanted to see her the next day and by the Sunday of that week we were booked into Yorkhill Hospital in Glasgow as Tilly was in heart failure.  She was to get life saving open heart surgery on the Tuesday.

She was a little trooper and after 7 hours of surgery and only a day and a half in intensive care, she was moved back to the ward – amazing considering the doctor’s had warned us that she would likely be in intensive care for a week.  She recovered quickly and even fed (quite) well, meaning that we were allowed home after only 9 days!!!  I still can’t get over how quickly she recovered from major surgery.

Interestingly, after her surgery the anaesthetist informed us that she had….wait for it…silent reflux!!  He knew because her oesophagus  was so inflamed!  That was the start of me learning to trust my own instincts and not always listen to what the ‘experts’ tell you.

I’d like to end this story with how her feeding suddenly improved and how she became a hungry, greedy baby (the dietician at the hospital warned us this would happen). But, alas, this wasn’t the case.  The feeding scenario pre-surgery became the norm.  The only difference was that we had some reflux meds to try, and because her heart was fixed, her wee body didn’t lose as many calories trying to feed as it used to.  But it was still a living nightmare – which continued through the weaning phase, the self-feeding and messy phase (what mess??  she didn’t even touch the food!).  It was such a challenging time that affected everything from her weight, sleep, nutrition to our mood, social life, relationship.  The ‘heart thing’ was a dawdle to go through compared to the daily challenge of trying to feed a child who was underweight and totally disinterested in food.  It even got to a particularly low point where we took her to A&E for a chest infection and insisted on seeing a dietician because we so desperately wanted her to have a feeding tube fitted.  We couldn’t take anymore of it.  It didn’t happen.  To be honest, not much did happen in the way of support.  We tried her speech & language therapist (SALT), occupational therapist (OT), paediatrician, GP – anyone who might help.

My nagging eventually worked because her OT set up a one-off ‘sensory food fun course’ that her and a SALT colleague ran.  Alongside Tilly, 4 other children were invited to attend.  I’m not sure what it was – the course itself, the fact that finally somebody had acknowledged my serious concerns or that Tilly wasn’t the only child who had serious issues with food – but from the end of our 6 week course, Tilly’s eating gradually improved.  It was a long, slow journey, but each week she would either eat just a little bit more, or try something new.

We’re now in a place where she actively looks for food, she loves food, she gets the same satisfaction eating food that I do.  She has her favourites, and things she won’t touch but don’t we all?  In only 3 years, the transformation is amazing.  And I will never ever take it for granted.

[By the way – that mother/daughter bond I mentioned earlier on.  It’s well established now, and it’s the strongest bond I’ve had with anyone in my life.  Thanks to a wonderful counsellor who helped me get through some of the darkest times I had ever been through, I learned to love Tilly for who she was – who she is!]