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:
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.