Goodbye Rug

Recently I have been terrible at blogging, leaving long gaps between posts that I need to write for my sanity. So before I start this, here is some proof we have been at least getting on with life in between:

Ikea is to Wriggles a gigantic dolls house. A whole day can be spent climbing on or off sofas with peculiar names and hiding inside show wardrobes. All in all, a marvellously cheap day out. Actual shopping with her is a nightmare still but if a stuffed mouse can be located somewhere it makes is mildly more manageable...

One big change we have made at home in finally taking the side of the cotbed off. Until recently, Wriggles still feeding tube feeding through the night and would get so tangled with the tubing that the safest thing was to thread the tube through cot bars. However once this wasn't necessary (for now), I grabbed the screwdriver and I must say it feels great to move her into a more age appropriate bed. So many things are dictated by her abilities or disabilites that normal things like a big girl bed feels just brilliant.

Wriggles LOVES water. Now she can independantly stand and do some "wobbling" (walking to you and me. She picked this term; I am not that cruel although it sure is accurate), puddles are hers for the taking. She loves stamping her feel if you her holds or hips to keep her upright. And of course, the British weather is happy to provide!

Wriggles is still a bit of a titch so can still fit comfortably on her (cheap substitute) Smart Trike. She can't always get her legs to stay on the pedals and can't pedal herself, but nevertheless, just staying upright on it is brilliant when you have cerebral palsy as your core strength is weak. Wriggles often slumps and folds like a concertina when she tires, but she managed nearly a whole mile walk of me pushing her on her trike, holding on to the handlebars and staying upright sitting on the seat herself. Even a few months ago there is no way she would have managed this distance, so it was a great reminder about the "invisible" progress that children make.  

Then this week during half term we had our 6 monthly development review. I knew it was going to be one of "those" meetings that tax the brain and merit large bottles of wine, as a few weeks ago we had our TAC (Team Around Child, ie. multidisciplinary meeting) during which several issues were flagged up by nursery which are consistent across the board and in front of the paediatrician our SALT finally admitted she can't always make head nor tail of Wriggles' speech despite telling everyone it was all 'fine with no concerns' for months. There have been things which I have put down to being 'Wriggles-isms' for ages but as she gets older they are beginning to stand out more. On the whole she is a delightful child, but there is something I can't always put my finger on that stands out. Things very much have to be on her terms beyond the remit of being stubborn or a 3 year old and she acts as if children don't exist, despite if they are standing next to her calling her name. She still hand-flaps when excited and has language issues outstanding. If you put a gun to my head, I probably couldn't tell you yet the differences or significant things which make me thing that our journey isn't over yet within the realm of SEN, but there is something. 

And it turns out our paed agrees. In fact, he was quite upfront and told me about 10 minutes in that he was mentally assessing her for austistic spectrum disorders before I had even mentioned some of my concerns, those of nursery and some of her 'quirks'. She doesn't yet fit an obvious profile but shares quite a few ASD traits. Our paed has long said she comes across unusually-there are no clear explanations for lots of her past. Her clinical notes never match up with her presentation in real life and the only concrete thing we have to fall back on for anything is prematurity. At the TAC, our paed stated that we shouldn't be surprised if there are further diagnoses along the way which came as no surprise. At that time though, I hadn't been thinking ASD might be one. I have vaguely read things in the past about it, but discounted it as Wriggles doesn't obviously match the triad of impairments. Then I was talking to somewhat about some of her unusual patterns of speech and they mentioned echolalia. Several Dr Google hits later, and someone could have been writing about my child specifically. What I also noticed was that ASD often came up in conjunction with the hits and read a bit more about atypical presentation and within girls and begun to make me think more carefully. In hindsight I am glad I read a bit as it made it much less of a shock when our paediatrician suggested it being a possibility we couldn't rule out at this stage.

The thing which complicates things and may yet be our diagnosis is good old prematurity. Whilst many babies do escape relatively unscathed, premature birth and the sensory overload that comes outside the womb can cause brains to develop unusual pathways that will go on to process information differently which will not be immediately obvious. The upshot is that many display strong traits linked with neurodevelopmental disorders, often across many, but not fully fit the profile traditionally of any of them. They are still not 'neurotypical' but don't have a 'name' to explain it away. It can be pervasive or resolve depending on the extent and individual child. Wriggles has already had an MRI which reads as normal, which as our paed says, really tells us nothing as it can't tell you the tiny pathways which must be affected or simply put she wouldn't have cerebral palsy which she obviously does.

It is all rather complicated and a bit of a muddle: it comes as no surprise, but yet it is always a blow to hear a professional say "there is something else" even when you wholeheartedly agree. Until those black and white words are uttered there is that thread of hope called 'so -called normality' and the idea that maybe, you have just gone neurotic. Obviously to have escaped this conversation until past 3 years old, things are on the mild end for which I am truly grateful. Of course whatever end of any spectrum, Wriggles would still be Wriggles and I would love her with a ferocity and fight for her corner and what I see as her needs whatever. But some days all the mild things stack up and feel overwhelming. Much, I imagine, like how Wriggles' brain probably views the world incoming. Which when I stop and think gives me great sympathy for her and explains a lot. It also makes me feel very tired when I think what we have to achieve yet. Every time I rearrange the metaphorical rug of life under our feet, someone gives it another yank. 

I am going to have to find some metaphorical superglue.

"Why?"

As a teenager, I grew up swiping my mum's Bridget Jones books and reading them, half hoping they were purely works of fiction (as a somewhat scatty hapless seventeen-or-so year old myself) and half hoping there really would be a woolly jumpered Mark Darcy out there as well as a mildly amusing job and good Urban Singleton friends to while away adulthood with. One of the bits that made me laugh was a scene describing Bridget being 'smug-married' at a party by her goddaughter. "Bridget, why haven't you got a boyfriend?" asks the little girl.

Today, Wriggles and I were having a rather nice time at a third birthday party for a fellow special care friend. I was on my turn child-watching in the thick of soft play, when one of Wriggles' fellow comrades turned to me, frowning. She looked over at the table where her baby brother was napping and the area for small people where very-wobbly littlest people were hanging out.
"Amy," she said. "Why haven't you got another baby?"
Oh dear, I thought.
It is bad enough when adults ask; number one reason is because I haven't got a partner. However, I suspected her parents would not thank me for an early induction into the complexities of life, reality and a sampling of biology classes to come. Wildly, I looked around for back up. Where is your own daughter when you need her?
"Shall we have another go on the slide?" I asked brightly.
Thankfully, she shot up the ramp like shouting at me to follow. So I did. You can't ask too many more awkward questions whilst screaming "wheeeeeeeeeeeeeeeeeeee!". And so that was that.

It did make me think though. Really, it was more funny than anything else. Although Wriggles' language is a little delayed still, her peers we know are at the stage where asking "but WHHHHY?" is their favourite past time and for all of them, it is obvious they are watching the world carefully and piecing together information to form the basis of assumptions, beliefs and security. I know she only asked me, because I was there at the time. Although most of the mums and dads I met when Wriggles was small are adding to their families, we were by no means the only one-child family at the party and certainly not within a social circle. I'm pretty sure I was the only single parent there, but that is a whole other ball game and I am secretly quite glad Wriggles has not yet got the words or inclination to ask why she doesn't have a live-in daddy like her friends do. I have no doubt it will happen, probably far sooner than I want or think, but for now I can pass off playground equipment as distractions and pull silly faces as answers. Damn this development thing.

I remember shortly after Wriggles was born, someone well-meaningly pointing out that by embarking on the ultimately probably terribly fufilling path of single parenthood, I was possibly sacrificing things further down the line, or would at least have a lot more obstacles than I might do otherwise. Of course, I don't regret it. I didn't know then and I don't know now how things might have turned out if I hadn't had a child then. Would I have ever had one? Statistically, it is very possible I would. But maybe I wouldn't; and faced with the reality of a small, wriggling bundle of half my genes I wasn't willing to take that risk. I had that chance now and it was unconventional and far from how I imagined, but who knows how life will really turn out? In many ways it hasn't been easy but I cannot imagine life without a child; my child. I suppose now she is reaching the point where equally things medically are settling down and life is becoming more relaxing (that is, more relaxing from a developmental point of view, not actually relaxing because she is a mad as a box of frogs) and also because this is the age where many people around us are having babies, and whether you are in that position or not, it does make you think about how your life is turning out and what it may do in the future: or not. When Wriggles started preschool back in September, there seemed to be babies everywhere and for a while it really hit home that there were very much just two of us and that that was not changing any time soon.

Quite aside from being a single parent, there is also the small question of her prematurity, the effects that have shaped the last 3 years and how that might come into play even if I was in a position to think about having a different family unit. Talking with friends who are contemplating providing a sibling, they are arguing out finances, bedroom quotas, having the patience for dusting out rattles and teething toys-understandably huge decisions after you get used to having one little whirlwind and all the practicalities and emotions they bring with them. When I think hypothetically, quite aside from all of that, I would want the blessing of a very good obstetrician to hold my hand and promise me I would never have to walk into a neonatal unit again, never have a terrible birth, never swim through the fog of skewed mental health, never have to visit and re-visit children's wards, outpatients and think about disability, however small. 

Also, Mr Darcy has not yet put in a permanent appearance.

I never imagined I would have one child on my own. I never imagined until I had that one child, that loving her so much would make me wish for another. I never imagined, as a teenager back then reading fictitious books that life could get really very complicated and that things that look so simple-finding someone you care for and managing a relationship-could be so fraught.

I'll let Wriggles and her friend discover that in their own time. Preschoolers birthday parties are neither the time nor the place. Particularly when there is a Hello Kitty cake to be eaten.

Sorry, Wriggles

Some days I long to see you run off as if in flight, with the crowds of other children.

Some days I long to see you slurp up a drink noisily and blow bubbles through straws.

Some days I long to just go out for lunch with you and order something off the menu for you to eat: with pleasure. No syringes.

Some days I long to hear your voice join the little words you are learning.

Most days I feel at peace with how things are and focused on your abilities.

All days I feel so heartbreakingly proud of you (except maybe, when you are badgering me for Maisy Mouse DVD again).

And some days I feel bone-crushing guilt and sadness that I couldn't "fix" things for you.

That I can't wave a magic wand.

I feel angry we have to rely on so many people and are only adding to that team, to help you achieve what comes so naturally to other people.

When you cry during physio stretches, I am crying with you. I've just learnt to have invisible tears.

If I had a magic answer, I promise you I would have used it.

You are so good; so happy really. So full of beans, so scornful of fear.

So why do I feel so sad and guilty that I have somewhere failed you? 

How is it possible to feel so grateful, thankful and elated and simultaneously so muddled, confused and aching for this life you never envisaged to go back to being hidden?

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!

Splish, Splash Bouce

We've all had our grievances and gripes about the NHS. It can get things wrong, from a hopeless lack of GP appointments to a waiting list longer than your arm, my arm and so-and-so-over-there's arm put together for any appointment not deemed urgent. And as Beadzoid wrote this week, it can get things badly wrong. But today, I just wanted to have a little rave because it also can get things right. And when it works, it works really well and makes a difference to the life of normal people. 

This morning, we went to a group arranged by NHS community paediatrics in our area called 'Splish, Splash, Bounce'. I am lucky to live near a big teaching hospital with a huge and greatly respected paediatric department that coordinates community outreach exceptionally well. Today we started an 8-week course of hydrotherapy and rebound treatment (physio on a trampoline). It also has some other umbrella services that run alongside this group and if nothing else, is a brilliant resource of meeting parents in a similar situation. The group is especially for babies and pre-schoolers with additional needs, particularly those with physical disabilities from the milder end of the scale like us to the much more severe end. 

We went last year, and whilst I enjoyed it and Wriggles loved being in the water, I always felt out of place. We hadn't come that near a diagnosis yet and as she was only a year old I had a horrible feeling that maybe I was imaging things and making a drama out of everything, using her prematurity as a shield. Last year other group members all seemed to have "proper" diagnoses and recognised conditions under the belt. They were all more of a toddler age and their parents seemed so more savvy-in hindsight because they had been dealing with this longer. This year, we are in that position and in the year that has elapsed we did get our diagnosis which in part has made things a little easier in that I don't just feel like a mad moaning woman with "a feeling in my bones" that something is amiss. We have found that secret world of multiple therapies, medical assistance and untangled some of the whats, whys and hows. In many ways, I am still very new and naive to this all. I am still at time struggling to accept, to find where we fit in. But this year, I felt much more comfortable and also more aware of things and in turn, more grateful services like this were on offer to us. Last year, a niggling part of paranoid-me thought they think I'm making it up, they're calling my bluff inviting us to special needs groups to see if I crack and suddenly decide nothing is wrong. Now I have researched more thoroughly, read up more, tried to access more things with varying degrees of success and accepted that my child needs some extra help, and I know all too well that services are greatly strained and really, you don't get offers of things that will not be beneficial! The group is number-controlled so the children don't get overwhelmed and so the physiotherapists can pay due attention to each child. As well as the physios present (in water and on trampoline) there are early years workers whom are like portage workers and people trained in speech & language and occupational therapy. This means that using signing as Wriggles does, does not stand out but is accepted and encouraged and there are people on hand to teach new signs. And some of the group leaders even have an idea what she might be going on about, rather than just waving her arms wildly whilst gabbling! Between the hydrotherapy and the rebound, there is a snack time which for us doubles up as feeding "therapy". All the adults know and understand oral aversion and quietly encourage and support, rather than shoving biscuits in her face and shouting "corrrrr bet you're glad she doesn't eat a million chocolate buttons to rot her teeth like my one!". They offer a mix of snacks to try and explore different sensory reactions rather than trying to be the most organic/healthy/cheapest/trendy buffet as so many of the children have feeding issues. They don't bat an eyelid at giving Wriggles an empty beaker so she can be like the children who can drink. I don't have to explain a thing. It is simply, bliss. Last year I feared I was just a bad parent holding my daughter back. This year, I know I am trying until I am blue in the face but that our road is a bit jumbled up.

I would be happy paying to access a group, so to have it on the NHS is icing on the proverbial cake. It is such a relief to know that there are services to help both child and parents. There are so many stories of children being failed by lack of access to things that when you have a positive experience, like this, it makes you very grateful. We have had our own share of care that ranged from scornful to downright unhelpful and so opportunities like these make up for it a bit. It is also a reminder that the NHS should not just be viewed as a luxury. It is the National Health Service, not an add-on. Without it, millions of people would be left to flounder in both development and health. The NHS is not just about hospital procedures or primary care trusts, it is about making the lives of people more comfortable and facilitating Independence. It is about support as much as treatment. And today, it got things just right.




....and in true NHS fashion, I just recieved a letter through the post for our next respiratory follow up. Despite our consultant wanting to see us in under three months time, we cannot have a slot until June and even then they can't gurantee us seeing our resignated consultant. You win some, you loose some...sigh.