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?!