Tired and Emotional

This week, I prayed for Friday to hurry up.

Not that weekends are generally different to weekends in terms of no extra respite; I've just been done with this week and want a new page, new leaf, new day. Over the past couple of weeks I have been looking into preschools as Wriggles is approaching her 3rd birthday. Once I got over the anxiety of someone else being responsible for her for a few hours a day and the shock of how quick she has grown up, I actually found a setting that I really liked and feel would be really supportive and nurturing for Wriggles. So I put her name down and plop, through the letterbox came confirmation there are two sessions a week for her from late September.

Due to her developmental delay and unpredictable mobility and balance, Wriggles will need support in any setting. Prior to even looking at preschools, I had been reassured she would be funded to have a 1:1 support in a mainstream setting as that is what her needs dictate for her to be thoroughly included and to flourish under. So it was not a nice surprise when I rang up the Early Years team who coordinate support and help with the funding paperwork, to hear they had magically changed their mind. Except Wriggles' needs and development had not magically changed. How about we tried to just 'wing' one session? Not that it was phrased as a question otherwise my answer would have been "how about we, errr, don't?!".

Initially I was too stunned and upset to cobble together some arguments. I spent a few days researching and picking the brains of fellow parents of children with additional needs, friends who were teachers or early years workers and my mother who is a trained SENCO and has been a 1:1 herself in the past to a little boy very similar to Wriggles. Later in the week I rang Early Years back to say I wasn't happy with their 'offer' as I felt it wasn't good enough. Perhaps naively, I thought they were joining our team of professionals to help be Wriggles' advocate, not put spanners in the works and possibly safeguard their own budget. I put my case forward and after a bit of to-ing and fro-ing it was agreed we could apply for 1:1 on both sessions as required and if the funding doesn't come through then she will be deferred until the funding does come through. The parting words from Early Years: "But we'll review again at Christmas for removing support."

She hasn't even started yet and they're talking about removing support?

Not even removing when appropriate?

I must say, it's been an unpleasant kick in the face. We might be back on plan A for the moment, which is a huge relief, but to know that the team we were told was going to work with us, are actively and prematurely contemplating plan B does not make for a relaxing life. I knew anecdotally that it is a sad fact of life, many parents have to fight tooth and nail for their children's welfare but given things have been running relatively smoothly of recent, I had hoped that might not be me. It does not breed trust at all in entrusting my daughter and her needs to other people. Already our paediatrician is recommending one thing only for those in charge of funding to claim he is "overreacting" and out of touch. Last week the majority of the team got together for a TAC (Team Around the Child) meeting which went brilliantly and I left feeling so reassured that finally everyone was on the same page and putting Wriggles first rather than inter-departmental politics, selective listening and budget targets. This partly made the claim from Early Years that support isn't necessary so upsetting-they were there at the meeting and at no point said anything suggesting it or that they disagreed with anything the paediatricans or  physiotherapist said. More than anything, it has heightened a feeling of loneliness that no one else is going to fight for my child like I will. I will fight for what I believe is in her best interests until I am exhausted and content with her provision at any stage; I just wish that there was a more compassionate system in place to actively met a child's needs rather than providing wild goose chases and parents having to argue with someone before they get an answer; particularly if the desired end result was available the whole time.

It has been nearly a year since official diagnosis and the whole business of having to point out the bleeding obvious, that my child is developmentally behind others, yet again takes its toll. It is akin to a neon flashing light screeching DID YOU KNOW SHE HAS CEREBRAL PALSY! Much of the time she is Wriggles, just Wriggles, my beloved Wriggles. But times like this have been a sharp reminder that Wriggles she may be, but a Wriggles with a bumpier path than many. Followed by sharp guilt that we have come as far as we have while others have more complexities to deal with and even less access to services. Life is unfair to too many people in this world and I have a horrible feeling that things become more, not less complicated over time.

Thank goodness for the rewards.

Back at last!

Little blog, it has been so long! 

After a long drawn out farce (TWO MONTHS, TalkTalk, TWO MONTHS) with installing a new telephone line in our new house, at long last I am finally connected to the Big Wide World again beyond a decrepit and irrational mobile. Wriggles reached the point where taking a laptop to a café or such with wifi to connect with all things online became not an option. I did try once; I went armed with a Mr Tumble comic, two toy hedgehogs, Quavers AND chocolate buttons, the favourite book of the week and spent a terse ten minutes fishing stuffed animals out my coffee, removing CBeebies stickers off my laptop keys and trying to shield technology from a tsunami of drinks, snacks and the sticky hands of a bored toddler who had climbed onto the arm of a sofa and was balancing precariously. Needless to say I got nothing done.

So we have moved in to our new place and have been quite happy pottering and settling in. Although not hugely busy, we have been up to quite a lot and trying to make the most of the brief snatches of sun as well as  drenching mummy  finding out about puddles during the rest of the time. Wriggles seems to have grown up again behind my back. She looks older, less like a typical toddler and more like a pint sized child with a wilful glare. Although she coped well with the move, it does seem to have accelerated her toddlerisms. It turns out I was kidding myself if I thought she had learnt about tantrums before or being a pest. Noise is her forte and she is not afraid to use it, especially if I dare take her shopping in the buggy (otherwise known as a fate worse than death). For someone who cannot yet walk independently she is adamantly averse to spending anything longer than two minutes in said buggy, which is a shame as she has finally put on some weight and at the heady heights of 12.3kg is a bloody great lump.

I will elaborate more but here are some of the things that have happened since the end of March in no particular order:

• physio confirmed that Wriggles will need to start wearing splints (AFOs) for a few hours a day to ensure her dynamic tone doesn't start hampering her range of movement, balance or teach her an incorrect gait pattern (wonky walking to you and me. It has already been noted that she walks a little like John Cleese in Monty Python's Ministry of Silly Walks. Funny now, far less so in the playground). The Piedro boots aren't quite hitting the spot on their own. We're just waiting for the appointment to be measured and fitted for splints. "She can choose her own pattern!" they said cheerfully. I am not sure that will be consolation enough but needs must. No one said things were easy all the time.
• Wriggles has become obsessed with Bagpuss. I admit to gleefully encouraging this as it does beat Baby Jake and other Cbeebies rubbish at times. Her favourite episode is without a doubt the Mouse Mill with the chocolate biscuits, and she asks/demands for "mouse!!!!" or "choc[olate] bi[scuit]" if she claps eyes on my laptop.
• her speech is either finally making some strides or I deserve a degree in translation. We still rely heavily on a mixture of Makaton/BSL signing to decipher sounds, as she can only pronounce either the first syllable or letter but her signing is getting quite clear and she has at least 70 'words' she can use singularly. They aren't all consistent and not all clear, particularly without signing or a context but it has to start somewhere.
• talking of speech, I had to waste several hours of my life throughout April attending a speech and language 'help' group. I am sure those devising it meant well and I truly hope it helped some of the parents attending but I can honestly say I have never felt so patronised, belittled or talked down to by NHS services and I have seen some pretty annoying consultants in my time and had to have a rather humiliating argument in the middle of a ward round in NICU when a consultant questioned my cycle dates and conception date for Wriggles, insinuating I was either fibbing, mad or forgot occasions I may have had sex, in front of a large audience and at a time when I was incredibly fragile, as was she.
• I have had some lovely evenings painting, re-painting and 'upholstering' some rather knackered furniture I own. Thank you Dulux and your 3 tester pots for £1 offer.
• Wriggles has had her first hair cut. I did it in the bath and hated it straight away, although am used to it now. I think it was the shock of seeing her less like a baby and looking more grown up.
• we met a real life baby when my closest friends from university came up for a glorious and memorable weekend, one bringing her 10 month old son. Wriggles was warily fascinated and carried around a photograph of the pair of them after he left and has become very interested with the idea of babies (although does refer anyone under about 5 as a baby). I in turn have also become interested with babies and ever so slightly broody, though this is now wearing off as I contemplate the idea of having two noisebags in the house, not to mention not possessing a man.
• I have ever so slightly started dreaming of trying to re-start non-child related hobbies. Recently we went to a picnic style gig outdoors and I briefly had a turning lindyhopping with a good friend and only fell over once. I danced (badly) all the way through university and it suddenly broke through to me that though I love being Mama I also am beginning to miss being Amy.
• we are officially doing the Blended Diet having confessed to the dieticians who are better than I thought about it. They were very damning on the telephone then turned up with a stack of recipes proclaiming "Shhh! You didn't hear it from us!. Our community nurse advised us to be a bit creative about how long we have in actual fact been experimenting and to let them think it is all their idea. So far, so good. We have also FINALLY added chocolate buttons and Pringles (red flavour only) to Wriggles' oral diet.
• I have my own bedroom back. It feels a little disloyal, but it is minor bliss.
• Wriggles fake-cries to try and get her own way or if I tell her off for being a pest. It can be like living in a very poorly directed pantomime at times. With less sequins.
• I decided to be frivolous and buy Wriggles a pair of spotty Doodles shoes for summer. She calls them her Mr Tumble shoes and definitely prefers them over her Piedro boots. So do I (orthotic benefits notwithstanding). After getting fed up with constantly seeing other toddlers progress so quickly and battling with a newer physio regime of more exercises, a walking frame and seeing on some paperwork Wriggles officially described as 'disabled' I needed something obvious and rooted in so-called normality and it turned out £15 canvas shoes that will probably not last long was it. It felt good. I am acutely aware things could be far more complex but they also at times, wear me down.
• we have found a new music group nearby which Wriggles really likes. This makes me feel less guilty about avoiding toddler groups and dragging my heels about looking at preschools. She has picked up the group routine, language and actions remarkably fast and I am now hoarse at the end of bath times after singing all the songs we have learnt.

Bright as a Button

Yesterday we had an excellent and slightly rare meeting.

Before Christmas we had a review with SALT (speech and language therapist) who ended it with "I'm not really concerned but....*trots out not one but two further referrals concerning lack of speech*". I was left thinking, jesus woman, just SAY IT-it's alright, I had actually noticed that most two and bit years olds have more than about 10 words on a really good day and thus things weren't running as smoothly as they could! It really frustrates me when people try and sugar coat things before ramming another thing through that just highlights you're in a pickle. I know they do it not to scare you silly and set off  the presence of the almighty (and frequently wrong) Dr Google, but then what actually happens is that you just get a bigger unpleasant shock when surprise, surprise, the next blunt-er professional you see says, "Do you know your child is delayed ...*insert delay shocker here* months?".

So anyway, we were referred to one speech parent & child group and also to the Early Years Support team, who are similar to portage. We are still waiting to the former as there is a waiting list and we had the latter meeting yesterday. It went better than I had hoped. Essentially, it was a play assessment to judge Wriggles' maturity through play and catch a glimpse of what amounts to her learning abilities and to get an idea of her intellectual capacity. Although speech does come into it, it helps to know if you're looking at a child with delay in all areas e.g. immature speech and some cognitive delay or immature speech on it's own. I was fairly confident that Wriggles is more or less on track cognitively and definitely for corrected age; then again I think the sun shines out of her arse so am probably not the best objective judge. 

The meeting was off to a good start when H, the EYS (Early Years Support) worker said Wriggles' reputation had preceded her and she has heard for months from her colleagues who know Wriggles through physio and Splish, Splash, Bounce that Wriggles is simply a sunny delight encased in a mad toddler. Cue first proud mum moment. Together with our SALT, we sat and watched and interacted with Wriggles playing around the room as well as vaguely discussing her history, what else is going on health-wise for her, future plans for nurseries and her communication boundaries. Pretty quickly, H said she felt that there was very little they could do from a referral point of view right now. Wriggles was clearly "as bright as a button" (second proud mum moment) and was demonstrating a good overview of play, both independent and social and seemed to have a good grasp of concepts, problem solving and memory. She did discuss with our SALT, C, about possibly referring us to a group of children with language delay just on single words (definitely us. I will fall over with surprise when Wriggles strings words together) but after the pair of them talked about it, it was decided that although that fits Wriggles' language needs, unlike the rest of the children currently in the group she doesn't have the cognitive delay also, so H felt the group would not push her enough as she needs appropriate input to facilitate speech. 

What this all essentially means, and the main thing that came out the meeting, is that when we come to looking at playgroups, nurseries and school we are looking at going into mainstream establishments. We will stay on EYS books so that when the time comes they can help us pick the most appropriate places and broker any meetings, alongside physio and the community nursing team. Depending on progress, it will need to be liaised to ensure it is a setting compliant with Wriggles' physical needs (which physio would mange, maybe by providing a walker or other mobility aid and possibly some assistance at times) and also a place supportive of Makaton and BSL signing as this still plays a big part in our lives and routine. I had worried that the physical and language delay might hold her back, and in one way it does. I have noticed, in her correct peer group, Wriggles does get left out physically because she hasn't the ability to run off, jump, move around in great strides-she is reliant on someone or something to move her. In a slightly younger group, it is still an issue but less so as slightly younger children don't bat an eyelid about crawling around or having a mum-walker whereas already I have seen 2- and almost 3 year olds 'baby' Wriggles in group situations because she seems at first glance, slightly more babyish in her movements or exchange of communication. But in another way, this meeting affirmed what I hoped to be true, that despite having some extra hurdles to overcome, Wriggles, possibly with some extra support and the right setting, should be able to settle nicely in her peer group and not just cope but thrive. H noted that through play, even though she doesn't have the speech currently, Wriggles demonstrated enough understanding and interest to be more than able to "join in" even in a less vocal capacity. Of course this is very early days, we haven't tried an educational setting yet and there is the whole other issue of needing feeding and a few sensory quirks Wriggles has. But one step at a time.

Because right now, I'm doing a jig on the moon and no-one can spoil it!*

This is possibly the first time we have had a meeting and not come out with another referral or after having another issue flagged up.

This is a great step when professionals note down Wriggles positives as well as problems.

This is one of the first times, if not the first time, I have come out thinking maybe, I am doing something right after all. Maybe I haven't buggered things up for her by either prematurity (thanks a bunch, womb), my own struggles with my mental health or by not being super mum with a play date here, an award winning toddler group there, French lessons, baby yoga, yadda yadda yadda. 

This is a moment I will savour and remember next time some ignoramus says "So, isn't she walking or talking yet? Why?". 

We might not have left behind prematurity or medical needs, but it is so nice to celebrate something for a change with those who oversee her development. And by the way, "nice" doesn't even do it justice. It is EPIC.




*don't you dare. Let me have my minute!

Understanding

Recently, I have been thinking a lot about speech and understanding. 

Wriggles is not yet speaking, but quite a few of her contemporaries have begun to say first words (but they are not nearly as pretty or funny or clever...) and learn counting, names and commands. I am not really worried about the absence of speech, and neither is the speech and language therapist which is a good sign to me. The pair of us get by with a very one-sided conversation and generally by intuition, guess work and knowing her inside out, I can just about grasp what it is Wriggles is going on about as she sits there going "mmmmmaaaammmmmnnaaanannanamamammamggh" or words to such effect.

Signing has really made a difference recently. We started going to baby signing (derived from British Sign Language but with similarities to Makaton in that there is a lot of emphasis on speech accompanying the sign as it is to aide spoken language, not substitute) at 1 year old (9 months corrected) and finally at 18 months old, Wriggles signed "all gone" in context.

That was it for quite a while.

Around her, the other younger babies steamed ahead ticking off 5 signs, 10 signs, extra signs....

"All gone!"

And then suddenly out of nowhere we have had a burst of signs. It helps if you are really really observant and have a good knowledge of what the signs are to look out for. For instance, Wriggles' sign for spider, train and fish are all remarkably similar. Star is only differentiated from milk by how many hands are being used. Teddy, hug and baby are all given the same sign by Wriggles that is actually the 'real' BSL for change. I know exactly what she is going on about, but many may be mystified! She does know and can do the signs for most animals, but if she is tired then everything is divided into two categories: cat (small ears) or rabbit (big ears) which she often does one handed. All gone covers a range of phrases from all gone to go away, had enough, finished, shut, closed, don't want it, scared, upset, hiding and don't you dare come near me with that stethoscope. She knows the actions and orders to quite a few songs and will wiggle on command ("dance") as well as blow kisses, mimes tickling, claps herself and mime "Oh no!" and "yummy." She often babbles "mamammmamamamama" which is applied to everything in sight and everything not in sight, but has begun to touch the side of her head when I come into view which I am hoping is her approximation for "mummy" via signing, as the taught sign from class is three fingers in manner of a scout salute. It makes mealtimes a little more straightforward as rather than guessing solids/milk, Wriggles can now sign milk at me when wants it and when she is not up for it, which formerly had a higher incidence of gagging before she could sign.

She knows when she has been cheeky or clever and though doesn't always show much reaction to words, has a very strong visual memory as when we see something familiar, her little hands start clenching in excitement, or she hides behind my armpit depending on what it is. We read books an awful lot, and she knows the order of favourite books and has pictures which stick in the memory she will return to.


So there is clearly a decent enough level of understanding.

There are three things I am mulling over trying to enforce an understanding of or whether to leave it. She is now 19 months corrected and 22 months actual. The last I heard of it, she has been classified as 'globally delayed' although I am convinced her cognitive, social and problem solving skills are pretty much on track for corrected age at least and her fine motor skills are catching up quick. I'm not too concerned about speech as there is understanding present and some communication via signing, which leaves gross motor as the "problem" area. Sometimes, she seems quite young and sometimes far older and wiser. Anyway, what I have been wondering about is:


1. Her Story


How soon do you start explaining prematurity? Obviously in incredibly simplistic terms; 'small/poorly/early' seems a good beginning. She has seen pictures of herself since virtually birth but has never been interested enough to sit still for 2 seconds to see who the pictures are of. She is more interested though in the "term" pictures than neonatal ones. It is down to prematurity as to why to are in hospital such a lot and regularly see doctors and nurses. This is Wriggles' "normal", as she knows nothing different and does not yet have a sense of being any different to those she sees regularly. Not-yet-2 seems very young to grasp a history how you got here, but we know other little people either with or those expecting siblings, that grasp a vague concept of babies and others that know about caring for baby dolls and such similar emotive role playing.


2. The Entourage


Which leads us to the medical professionals. The person we see most is our physio lovely Gemma. Wriggles definitely recognises her and although she won't let her touch her feet, she will happily go to her. I often wonder, does she think she is a funny friend or does she know she is different? I have tried to vaguely explain Gemma comes to do exercises to help her legs so she can feel better but don't get a flicker of recognition or interest. Partly, breaking down the collection of professionals relies on recognising body parts, ailments and time frames. We are getting there on body parts (at least for nose, tummy and the other day, knees) but it has taken a long time for her to be aware of many limbs far less have names or uses for them. The only reason I have been wondering recently about being clearer about separating these people is that she is becoming increasingly aware by the name and quite clear about reactions to places, and I think sometimes it must be very bewildering to just be taken somewhere which either may be nice or may be upsetting or may be tiring. It might be for a short time (e.g. doctors) or might be overnight or longer (e.g. hospital!) but equally the same place (hospital) might be for a check-up or a social visit (e.g. NICU support group and an opportunity to butter up the nurses who remember her as a very fragile scrap). We've read books like Miffy Goes to Hospital and at least pointed at pictures and named key things, but judging by the lack of reaction, linking a connection between story and real life is too advanced. Although some books do elicit connections being made, relating to perhaps routine.


3. Feeding Hell


This is the biggie and the one that is closest to my heart, divides my brain most and is most pressing.
Given our recent ultimatum,time is of the essence and feeding either fluids or solids is really now very important to produce results and also maintain enjoyment and acceptance.
Do I carry on as normal, and then if there are negative consequences (feeding tube implemented or some hospital stays specifically for observing feeding patterns) have to then quickly find a way of describing it in ways a very little person can grasp?
Or do I try to introduce the subject without sounding too terrifying or like a threat? I don't want to scare the poor mite, but it is very unfortunate that at present she is being incredibly fussy about even the few things she would accept orally at a time when I really need her to be more open in order for us to stay off the dietician's radar as much as possible.
"Eat some yoghurt or someone'll put a tube down your nose" does not exactly conjure up a jolly mealtime to look forward to.


Visually presented, she does have a concept of what an NG tube is. I know this because in April when she was poorly and ended up on a drip in the end, when they tried to insert an NG tube, merry hell broke loose before they got within two feet of her with it and she was clearly absolutely terrified. 
I really really really REALLY do not want that to be a regular occurrence.
Obviously I am hoping it won't be.
But I do have to face up that either NG or PEG feeding may be a reality in the short term. She is a not a little baby anymore. She is aware of surroundings, has some sense of things to happen and has very clear triggers, visual stimulus and a surprisingly clear memory. 
When she was poorly very recently, I did try to reason with her (I say reason; I was literally sobbing in desperation trying to persuade her to at least part her lips to take just a 5ml syringe of water, hydration fluids, milk, juice, Calpol...anything) when she was becoming very dehydrated through refusal to take anything orally and the nurse was warning us that an NG tube was very much on the horizon as soon as the shifts changed over if progress had not been made. Maybe she took pity on me, maybe she just changed her mind, maybe she understood-but at 10pm that night, she finally took some fluids for the first time in 24 hours.
Now that was an extreme situation. We were both displaced, tense, she was very ill and I was very upset. Crying at teatime is not an everyday occurrence and it is not going to become one. I don't want to sound like I am regularly making threats, but should I refer to the prospect of tube feeding in the future? Or should I just leave things relaxed and then think on my feet if it comes to that?



Who would be a parent, eh?!

Baby Signing

In the days pre-Wriggles I had little to no knowledge of "baby classes" and thought the likes of baby yoga and such like sounded ludicrous and waste of money. Fast-forward to actual mummyhood, and like most of my pre-child preconceptions, I think differently. Since, the days of my mum having me and my sister when your choices were the NCT and the local mother-and-toddler church group, there is a plethora of choice available to offer an escape from staring morosely at the pile of washing and grimacing through repeats of In the Night Garden.

I have tried out a few, namely those that come with a free cup of coffee and chocolate biscuit, and my favourite so far is Baby Signing classes.We started going purely because they were quite near and on one of my days off and not too expensive. I also had in the back of my head that speech delay in prems is very common, and if Wriggles picked it up well then it certainly wouldn't hurt to have some sign language under our belt.

Dr Mummy

Whatever else goes with being a parent to a prem, one thing you do get out of the experience is some new skills and vocabulary. You can add a boost to your CV and sound quite brainy when needing too, by rolling out some swish new medical jargon. Furthermore you can confuse the doctors by beginning to give the impression you are a doctor-in-training and baffle and possibly irritate your GP and Health Visitor as you sit and patiently explain the notion of corrected age for about the fifteenth time in a row.

In my NICU, parents on discharge were automatically trained in infant first aid, primarily resuscitation and CPR and were given a nice long list of warning signs and pamphlets about this that and the other. Coupled with a baby on oxygen (more basic training) and at a year old a brief period of nasogasteric feeding needing further basic medical training, and I can generally hold my own with a set of medical professionals until they get very technical and clever.

The downside of this is sometimes you do go to see a doctor because you actually want guidance and advice.

Mixed Feelings

This week several things happened which I have very mixed emotions about. None of them are huge things and were all things I either half-expected or knew was going to happen.

Following a letter from the council telling me that in line with new government regulations my rent would be going up nearly £10 a week which is quite a lot in my budget, I have caved in and applied for some housing benefit. Although my flat is privately owned, it is council managed. The rent between two people would be quite reasonable, but as I am only one and not on a huge wage, any increases are more than usually unwelcome. I have thought about it on and off since Wriggles was born and I knew I would be a single parent, but with working part-time and topping up with tax credits, I have been proud that so far I have been able to manage and cover it all. It made me feel more independent and that I was doing something good for my family. With an increase though and none in my wages, it is just too tight and I need some help until Wriggles is older and I can work more. At present even if I took on extra hours, the cost of childcare will render these useless especially with no local family to soak up babysitting duties. Plus I would be (more) shattered. Although I'm relieved to have such a system available when people do just need a helping hand, I wish it wasn't me having to use it. I know it's not forever, it just feels like falling into another stereotype.

When I got back from doing this at the library, I found a letter I have been expecting since October. It is Wriggles' referral to Speech and Language, announcing a home visit in just under a fortnight.

Living with Oral Aversion

Oral aversion is hard. Really hard. It strips away one of the most natural things a parent does for and subsequently teaches their child: to eat.

Oral aversion is defined as "reluctance or refusal to eat". It can arise from a number of sources, and often from more than one. It responds well to therapy but does so at snails pace. The reluctance or refusal is not a generic toddler phase of bad manners or defiance; it is linked with oral trauma and thus is an intense experience for the child that literally stops them from eating, swallowing, trying things or allowing textures nearby the face. It must be very frustrating if your child only eats Quavers, cucumber sandwiches and Kit Kats but that is not quite oral aversion.

This post by Life with Jack sums up perfectly much of how I feel about it. Having not yet encountered someone face to face with this problem, the internet has been a lifeline of information and hope for the future. It has given me reasssurance and I have "spoken" virtually to other parents who have been there, done that and got the sodding t-shirt. This has meant a lot, as it is one of those issues that is hard for some people to truly understand and therefore can be quite isolating. It is easy to say airily "Oh they'll get there in the end" but when your child is only on fluids or is reliant on tube feeding whilst around you others are scoffing three meals a day of a variety of textures and tastes, it can feel like another world. And the reality is that it is not going to change fast or go away over night. It is not solved by intense hunger or withholding "safe" or favoured items.