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!

Star Patient

A proud moment today as Wriggles crawled onto the trampoline at our rebound therapy session and her physio Jemma exclaimed she was her "star patient". This is brilliant news and such a boost, after more weeks of food refusal and a bug creeping in. Although Wriggles is the most able member of the group, it is still lovely to hear that other people are just as proud as me and see ever little change as a huge cause for celebration. The extent that the hydrotherapy lessons have helped Wriggles explore her legs and strengthen her torso and core muscles has surprised everyone.

Smile

Augustus and His Smile by Catherine Rayner is one of my favourite books. I adore Catherine's illustrations which are classic, whimsical and full of character. This is one I will happily read again and again to Wriggles; if she will let me! It is one of the very first books I bought 'for her' when she was a few weeks old and still months away from being classed as 'term'. Once she came home I would show her pictures and read the story to her when I became stuck on what else to say to a newborn. (The books say talking to them is vital, but they are not very conversational!)

Augustus is a happy tiger until one day his smile goes missing. He sets out on an intrepid adventure to find his pesky runaway grin, taking in the treetops, the desert, the sea and the mountains. Rayner's pictures transport me instantly and her colour palette (it's the former art student in me!) is gorgeous. I love then enormous pictures that you feel like you could step into.

Luckily for Augustus, his smile is not far away. As he skips through the rain, he catches a familiar sight in a puddle....you'll never guess..his smile! Have a point and a chocolate biscuit all round if you got that one. 

It is a sweet tale without being nauseatingly twee, and I think the tiger and jungle setting makes it loveable for both boys and girls alike. I like the simplicity of it and the purity. toGranted, I have never met a materialistic tiger hellbent on this season's antelope handbag, but I think it has a really strong message that all you need to be happy is to be yourself and to enjoy life and all the experiences that it throws at you. My baby daughter already seems quite keen on throwing herself into life, and she has the most blissfully gorgeous cheeky smile that I hope will be plastered on her face for eternity. 

This story reminds me of all that I want for her-happiness. I can try to provide as best as I can and doubtless will sometimes fall short. I may not be able to literally bring her the mountains, the desert and the sea (THINK of the carbon footprint, not to mention airport tax... ) but I hope I can show her, or guide her through the richness of life enabling her to sample everything.
I think children become your "puddle" so to speak. We all have moments when we wobble and fall down and feel really, really rubbish or lost. But the magical thing about being being a mummy, is that you have this little mirror trailing around your legs; an infinite reminder about what life and living is all about. When I came home from work today, my daughter didn't want to play with her toys, she wanted me. It was either one of the more explicit times that she demanded unadulterated affection, or one of the first times I've really noticed since starting to shake off the fog of depression. We played on the living room floor, she sat on me as if I was a seaside donkey and we sang, tickled and laughed. As I plonked her into the bath, she would turn to me every few seconds inbetween gleefully splashing (her new trick), offering up a huge toothy grin. It made me feel all wibbley inside. It's such a soppy cliche, but her smile is my smile. 

When she looks at me, nothing else matters. 

When I was really struggling in the past, in the thick of hospital admissions and uncertainity and horrible doubts, I never thought I would be able to think as simply as that. I have always known that was the 'right answer' so to speak, but there always seemed to be a "but". I'm not naive enough to say that's it, the bad is all gone away and shall never return, life is so more complex than that and the human mind is more complex still, but I know what is real and what really matters. 

And that is what I want Wriggles to know most of all out of life: that happiness is more important than perfection. If you can be happy and make other people happy, then you're doing pretty well. As you become an adult, then a parent, it becomes a very intricate balancing act taking all sorts of factors into play to achieve such an end. What I'm learning is that you don't have to have it nailed completely, not all the time. Life evolves, what is important one day is not the next. But that's the great thing about special people. They don't change. My baby will be my baby in 50 years time and will be as cherished then as she is now, just a lot bigger. I don't know how our lives will pan out, I'm pretty sure that there will be hardships and heartache as well as lots of fun. I know realistically I can't keep her grinning the whole way through and that by the time she is grown up, I will be one of many people who are at the core of her life but I was there at the beginning. It's quite awe-inpsiring to think I set her on this journey as she makes her world around her. To go back to the book, that is why stories are so important. They help the smaller people see and equate things in their life with names and experiences. They provide pictures and words to confusion and consolidate rules that surround them, both the spoken and unspoken. And they always have a happy ending! (Or at least the good ones anyway) I think it is equally important for adults to sometimes be reminded of that, and hark back to very clear cut facts. We all know that good isn't always good and bad isn't always bad by the time we've grown up, but sometimes you need to shake off all the heavy 'stuff' and just look back into your puddle or whatever metaphor you want for yourself, and just relish in the better times. to stop thinking and worrying for a moment and just be.

My Letter

Dear Me,

It's ok to have a bad day everyone-everyone else does.

It's ok not to be perfect. Who have you met that is? Brilliant, yes. Perfect, no. Your mum was not perfect. Your nanny was not perfect. So why do you have to be?

A good family is not always two parents. It is a loving household.

A good home is not a big house (by the way, you will not live in a council flat forever)

Few people want to go to work.

Everyone has a tough time sometimes.

Tomorrow is a brand new day.

You live in a happy house. 

You have a happy and contented and clever baby.

So you must be doing something right. That means that you can relax.

Love from,

Your more rational brain 

x

Ready, Steady.....nearly...almost...get set....hold on a minute....

Wriggles is at the stage of development where she is teetering on the edge of many things. She is on the right track for many things but Not Quite There Yet. I am amazed at babies who seem to develop new things overnight without so much as previously hinting that they ever felt an inclination to bash boxes together or starting clinging on the sofa for dear life. Every milestone of Wriggles' is a proud moment that is the culmination of months and months of frustration and practise. She is ALMOST at the crawling stage, NEARLY using two hands together, GETTING THERE at the idea of being able to sit up from lying down, GEARING UP for speech...ish... Sometimes waiting feels forever as others move on quicker and sometimes it feels as if it all goes so quickly that each day is a bonus as my baby is very quickly turning into a not-so-baby anymore.

She is roughly 16 months old now, nearly 13 months corrected. She can now sit unaided, bash things together, blow raspberries, 'say' "mamammamama" "bababbabba" "gggagguuuu" and "llllllllllllllllalllaallaoooloooo" though none with meaning, wave at her reflection, kiss her reflection, blow kisses/do a fish impersonation (it is questionable), roll over from back to front, get up from front onto all fours and then get stuck and to be able to reach out to all inappropriate objects she cannot have. It is uncanny that babies are willing to go on intrepid adventures to try and nibble to plug cable but will not shift for a Proper Educational Toy.... We're still a bit at the stuck beetle stage of mobility but she is very good with a wooden spoon and a toy xylophone and cardboard box.

Today we had a really positive physiotherapy appointment. When discharged from SCBU, we automatically got physio as Wriggles had bad torticollis (sqwiffy neck) and pronounced plagiocephaly (shorn off head). As she was also born under 28 weeks and had a negligible history, it was also advised to keep up the physio once the torticollis sorted itself out. This turned out to be rather good as it was about then that the Great Hospital Obsession started. Shortly after PICU, Wriggles appeared to have forgotten her left side existed, rather worrying both me and the physio. Typically by the time we saw a paediatrician she had remembered and luckily has kept remembering. We have been very lucky in that the two community physios we have had have been wonderful and a credit to the NHS. They have easily been some of the most supportive and helpful health care professionals I have met and are willing to go above and beyond, and have helped me chase up referrals and access opportunities. Just prior to Christmas we had a developmental assessment with the paediatrics team which was so-so; it was nothing I didn't know, notably that all her skill areas carry a 'lag' (2-3 months behind average age of mastering a skill, but showing signs of getting there), her gross motor skills are 'delayed' (a more noticeable delay that may need attention) but cognitively and socially she is a bright button with brilliant hearing and sight. All in all, considering prematurity, a cardiac arrest and the ten or so admissions over the year, they were pretty pleased. At the next assessment, if her gross motor skills are not looking vastly improved they will arrange an MRI to determine if there is any long-lasting damage in the brain that may have occurred since the last brain scan carried out at 6 weeks actual. And I thought we had kicked the hospital! 

Watching my little girl grapple with a large inflatable toy today, I was astounded again by how much she has come on. Both at birth and after PICU, both the doctors and myself did not know what to expect. "No promises" they said. "We can't tell you she will be fine". Sometimes wait and see seems a horrid deadline of worry and anguish, but on days like today, there is no wait and see, just my baby and me. She seems relatively and miraculously unscathed. Albeit with a 'lag' and some 'delay' but I have no doubt she will catch up in time, just maybe not as fast as hoped. And on her terms-she is certainly a stubborn personality who knows her mind.

I think in the mean time I had better start baby-proofing the flat in earnest!