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!

DAAAAARRRRRRR!

Partly because I knew premature babies were at risk of speech delays and partly because it promised a free cup of tea and biscuit, Wriggles and I have been signing since she was a little over a year old. We diligently attended classes, signed at home, watched Mr Tumble and clapped graciously every time one of her younger peers learnt a new sign. Then, suddenly at 18 months she became quite keen on gesticulating wildly. Except it wasn't just a random movement, it looked quite calculated. It took a few days to work out a fairly reliable context that kept cropping up next to the hand waving, but it soon looked quite obvious she was signing "all gone" to me. This came to be applied to many situation: all gone, I've dropped it, oh dear, go away, that hurts STOP IT (to doctors), no more, finished, I'm fed up....

On we plodded with our first sign very proudly. Just as well, because it was months before there were any further signs of attempted communication. Very slowly, it began to emerge Wriggles was building up some level of understanding and when people would come for tea and begin to talk about leaving, she would eagerly start waving like a mad thing. Then suddenly there was an explosion of signs, and we now have a vocabulary of about 30 signs. Compared to some children, this is little, but for us it is huge. It gives us another tool of communication beyond whining and guesswork and Wriggles treats it as a game, making her far more likely to pick it up. Crucially it has demonstrated that her level of understanding is far superior to what she lets on. It has been a long time coming, her showing any response to language, signed or spoken. I remember being quite concerned last Christmas when she has just turned 1 corrected, as beyond recognising her name, she seemed to show no comprehension at all of language. She was quite visual and understood basic routine through sights and familiarity and her hearing seemed fine. Her ears would prick up at every noise, but words? You may as well have not bothered.

And then, this past week she has become very keen on signing "star" a lot to me. She has been signing it for a while in context, but suddenly there are stars everywhere. In books, in songs, on patterned clothes... Of course, it's not that there are genuinely more stars in the world, the difference now is that she understands and has had a burst of excitement because she knows I understand her back. It's suddenly a two-way thing. And most importantly, she has a word to go with it.

"DAAAAAAAAARRRRRRRR!"

At first I thought it was a cute coincidence that her gibbering was copying the inflection of the word she was signing. Then, as she did it again and again and again I began to dare to hope; was this fledgling speech? Today, not for the first time, I found her sat with a book jabbing at pictures of big yellow stars shouting "DAAAR! DAAARRRR!! DAAAAARRRR!" and when asked, she will happily screech "DAAAAAAR!" in reply. 

Unless she wants a rendition of 'Twinkle, Twinkle', she saves her new word for it's context. Which of course crops of frequently-both she and I are so proud of her that I make sure there are lots of stars everywhere for her to be able to show me what they are!

Just shy of 2 years old our first word. Not bad going, preemie. Not bad at all.

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?!

Rain rain go away

I cannot begin to tell you how fed up I am with this rain. Except that if you live in the UK too, chances are you share my feelings and are busy with the same sentiment. The trouble I have is a simple equation:

Heavy rain + cooped up toddler = Not Very Good

Toddlers, need entertaining. Toddlers like variety. Toddlers like destruction and space to roam. Mummies do not like getting wet. Thus, being stuck inside the house is a nightmare that will often result in two people climbing the walls by 4:45pm. After a while, you run out of producing tricks, your voice goes hoarse from singing Wind the Bobbin Up a little too enthusiastically at first not anticipating how many times it would have to be repeated, there is nothing actually left in a drawer or cupboard, all the crayons have gone missed (lobbed God knows where) and every new and exciting (really!!) activity is met me snarls of defiance and lunging for the remote/telephone/bread knife/plug sockets/bin.

"Helping" address a card

Bookworm at home ravaging the shelves

In good weather, I have tricks up my sleeve. Namely ducks, pigs, the seaside, the playground, picnics outside, drawing on the path with chalk...I know, I do have ENORMOUS sleeves. In torrential floods, I must admit I am stumped. There is only so many times you can haunt soft play before you either go bankrupt or mad, and the great problem is getting anywhere in lashing monsoons. Yesterday we braved it and dashed out to toddler group which is all of five minutes walk away. Today, after miserably watching the drizzle we seized the moment and decided to go and bother the quiet literary types at the City Library. Luckily everyone else had the same idea and there wasn't a single literary type in sight. Instead there were some small children full of beans, what looked suspiciously like a great thong of the Unwashed talking earnestly about dragons and dungeons and taking up all the tables with their special tablecloths and lanky anaemic looking limbs, and several elderly ladies asking about Fifty Shades of Grey.

Our City Library is now huge. It has six floors including a nursery and creche, exhibition space, gigantic paper mache tiger, permanently shut job seekers advice (how fitting in this climate!) and a severe lack of books. It is very clean and modern, but does bear a minor resemblance more to a shopping centre or empty airport lounge as opposed to a centre of learning. Luckily it does contain children's books and a small area to amuse said small children. There is a rather exciting pretend tree and a huge print covering both a wall and curtains of clouds in the sky, so you can pretend you are outdoors. A bonus for us today, was there were some wide steps leading up to this. At the weekend, my friend decided her honorary aunt duty was to teach Wriggles how to climb up stairs. In just under an hour, Wriggles went from clumsily scrambling over legs to being able to shimmy up a lengthy and steep flight of stairs without a second glance. So being able to practise this new skill was a winner as far as she was concerned!

Mastering the stairs

Wriggles by name, Wriggles by nature

 As it was in the same building, we were able to call by the nursery Wriggles had temporarily been in whilst I finished work after our poor childminder had had to bring her retirement forward drastically. Due to our recent hospital admission, Wriggles had missed her last day so it was a lovely opportunity to say thank you and pick up anything she had left. Although she hadn't been there long, she had been assigned a key worker and had a folder full of 'drawings', observations, photographs of what she had been up to and descriptions of how her days there were filled. It is not just a lovely record to keep, but was also somewhat of a relief reading through the notes especially those in reference to the EYFS framework and child development. Although we know she has delays, and has been officially marked down now as globally delayed, the observations were glowing with her skills and it was clear that those partaking in her care were every bit as chuffed as I was every time she did something new. She may seem young for her age, but she is very much getting there and it was with both pride and pleasure that I noticed she is ticking many of the boxes for 8-20 month old development in social, cognitive, personal care, language and gross/fine motor skills. The speech and walking may be missing, but she is quite adept at communicating her needs, charming the pants off making relationships on her own terms and getting around to her wishes. I knew at home she was beginning to grasp the concept that things have uses but this made me laugh:

"....Wriggles was exploring the (toy!) mop, turning it upside down. Earlier in the day, she found the sweeping brush and proceeded to attempt to try and manipulate it to 'clean' the floor and also then to brush her hair."

I must admit, the idea of my Wriggles, who if she didn't look less baby-like by the day could easily pass for 10-11 month old, wrestling with a full-sized sweeping brush and attempting to comb her hair with it made me snort out loud. 

That aside though, the report was full of positivity and it will certainly be accompanying us to our next development review. It backs up what I have always thought and said, in many areas she is going at full steam ahead and what some areas may lack in, others such as social skills and confidence, she more than makes up in. One horrible review now months ago, it was implied that by being from a single parent background, she wouldn't be able to be brought on as much as a child from a more traditional background. I was told that unless she went quite substantially to nursery among lots of children, she would flounder. Yes, these recent observations have been made in a nursery setting now (albeit a very small indeed one), but she has clearly managed perfectly well to get this far with so much character by either being with me, or the childminder who only had one other little person one day a week. There might only be two of us, but since that stinging remark I have been determined to make sure we socialise and go to lots of activities in groups and see lots of friends to widen her circle. And it looks like it is working! She is not even 2 yet, so even on a purely hypothetical level as finances would not allow any nursery, I am not comfortable with having her away from me unnecessarily. She is a bright button and unless we become hermits, I refuse to believe her development will be harmed in any way by not rigidly following guidelines in a large group of peers.

Now if that rain can just stop for one minute to be able to get out and socialise....

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.

M m m m m m m m m mmmmmmmmmmm

In style of Sesame Street, today's bletherings are brought to you by the letter "m"!

Yes, hold your horses, Wriggles has finally got round to being able to babble "mmmm mmm mm". I am very excited. For a long time she didn't really vocalise apart from the good old fashioned "waaaaaaaaaaa!!". Then came a bizarre phase where she sounded like a goose. All day, there came a "honk honk hooonk honk" from wherever I had placed her. It truly was odd. One day all my best laid childcare arrangements fell through (and plans B, C, D, Y and Z) and she had to sneak into work with me. Luckily boss lady was away and it was just myself, Goosey Gander and my lovely marketing colleague. Being a theatre company we have plenty of bonkers props lying around the office (glittery chameleon, motorcycle helmet, furry handcuffs, rabbit water bottle...) and one such prop was a bag a toy ducks that made a noise when pressed. So Wriggles laid under an improvised baby gym and had a ball whilst the two adults present set off the quacking ducks which elicited more honking... Best day at work ever!

The honking diversified into dolphin like clicks and I began to wonder if I had sung too many versions of Old Macdonald or if she had been exposed to an excess of Richard Attenbrough as a Very Tiny Baby. Eventually the traditional "b", "da", "p" and raspberries entered the menagerie. I felt quite left out. Where was my "m"? I was only the bloody one that looked after her all day, every day, got up at the crack of dawn, played with her and had consigned all ex-favourite clothes to being sick rags! But now all is ok. I'm not overly convinced the "mmm" is an imminent version of "mummy" but I am going to pretend otherwise. Likewise, her childminder is also playing this game. When I went to pick her up yesterday, Wriggles was in the buggy "mmm mmmmm mmm mm mmmm"ing for Britain and our childminder excitedly pointed this out and decided it was an greeting of "mummy!! Where have you been!". I do sometimes need these things pointing out. I don't know if it is me or the PTSD which arose after the PICU admission (of which I will blog on at another date. It's not a picnic so I won't waffle on!) but I can be blind to her affection towards me. Other achievements I pick out hawk-eyed, but I have always had a nagging doubt that whilst I have bonded with her, she is longing to be bonded to a more competent mummy. I'm pretty sure, at least on a rational day, that babies do not have this thought process. I don't think being sociable implies a dislike or indifference of the Main Person in your life. But I just can't quite finally kick the habit of doubting myself in this area. I know it's probably ridiculous, but then again mental inflictions are not renowned for being full of sense.

Today she looked actively excited when I came to pick her up which has put me in an excellent mood. Even better, I am now finished work for the week so have three whole days off. Hooray! We have a physio appointment tomorrow and one of our adventures in the morning. Finally at the grand age of Wriggles being 1 we have started tentatively doing mummy and baby activities. Again dear old PTSD rendered me a social wreck for months, plus on the days I was not at work, Wriggles was sickening for something/sick/I had been up all night with a coughy baby and we were both knackered. Now she is managing more weeks at a time before having a blip, I had made a non-new-year resolution and decided I was going to go to something and even if I went the whole thing jibbering in the corner, I would keep going. So on Tuesdays and Fridays we go to baby classes and do singing and signing. Having an activity pacifies me (as opposed to floundering like a stunned fish in a directionless group where all the best mummy friends yap together, a snotty terror steals the best toy and everyone else, adults included, grizzle until the end when you can down your basics-instant coffee and run for the hills), Wriggles gets to poke the eyes out of other babies and get walloped on the head in return, such fun! I have even had some genuine conversations with people, which turn out to be not as terrifying as envisaged. Onwards and upwards, eh.....