Sophia’s 3rd Birthday and Annual Review

Present opening with James

Present opening with James

Another delightful, albeit low-key family and close friends birthday party. (So unlike James’s affairs!) Although I did see on the internet there’s a mobile ‘soft-play’ bus you can hire for functions and I think that would be a great idea for Sophia in the future if we can find a parking area big enough. She could go in it with just a couple of people and crawl and tumble to her hearts content. The few soft-play places I’ve taken her to have been filled with too many excitedly manic children and as soon as she has tried to tentatively explore the tiny tots area another child bamboozles in immediately, much to her frustration. It’s very sweet in that the other child wants to play alongside her, but Sophia doesn’t understand that yet and becomes upset. (Plus, I’m definitely getting too old to be crawling around the tunnels, lifting her up the steps and wriggling through snake-like rope climbers. And don’t you hate it when, after all that effort to get to the top, your jeans stop you going fast on the slides! Although I didn’t dare mention my age concern when Poppa, heading towards octogenarianism, scrambled out, red-faced, having been dragged into a play area with James this summer.) Actually, I’m not convinced the cleanliness in these places is great for Sophia’s health as she is poorly within 24 hours of visiting them. I think she’d like the bus though…

And this year, James happily helped the birthday girl unwrap her presents which she showed immediate interest in. A very exciting development. But there was a big box to scramble in and out of which inadvertently won present of the day – again.

Developmentally, we have had some incredible news regarding Sophia’s vision. Since the increase in vision stimulation after the backwards slide due to Sophia’s ill health and my complacency, it has literally gone from strength to strength. Miss Cottenham, Sophia’s Ophthalmologist, saw her for the first time since she went on maternity 18 months ago and was absolutely blown away by her sight development. Blown away. It’s the best sight development she has ever witnessed in a child with CVI (Cerebral/Cortical Vision Impairment). From the tests they carried out she reckons Sophia has the vision of a 12 month old typically developing child which in turn absolutely blows me away. I’ve always thought 12 month olds can see pretty well – wow! Her vision is still not consistent, however, in that it varies on a daily basis depending upon health and situation and is stronger peripherally to the left than to the right, and she avoids eye contact where possible, although obviously we’re working on all these areas. The potential operation to straighten her eyes is looking less likely now though, thank goodness, and glasses still won’t improve her vision although this will be assessed annually, if not more frequently.

Interestingly, because her eyes aren’t in alignment, Miss Cottenham said that she won’t see in 3D but her brain will have learnt to adapt to this hence her reaching out for things and negotiating objects when crawling. She has bumped into an awful lot of objects since she took off on all fours, it has to be said, but far less than I was expecting. I find the whole concept of her not seeing in 3D most odd, but it does explain why she is extremely tentative when putting her hand down on a different visual surface i.e. if she’s crawling from a carpeted floor onto a wooden floor, she stops crawling, slowly explores the wooden floor first with both her hands obviously assessing if it’s OK for her to move onto it. Once she has become familiar with a floor transition she simply continues her crawl without pausing. Excellent self-learning. Plus it explains why she constantly misjudged the step in the middle of the lounge when going down it – faceplanting with regularity (ow). I thought that was because she couldn’t negotiate going down the step as well as she could climb up it and not because she didn’t realise there was a drop there with both floors being the same coloured carpet. She has learnt through her pain, thankfully!

The other massive vision development is: Sophia has started to comprehend primary colours (blue, red and yellow) as well as bright pink. Finally, the colour tins have proved their worth. This is actually ahead of her overall development. According to our Portage Checklist this skill is rated to be that of a typically developing 2 year old – way past our expectations. As well as having the colour tins with specific colour related objects in them, we’ve played an enormous amount with coloured bean bag frogs this past month. Starting with 1 colour, then introducing a 2nd and getting Sophia to chose a requested colour and then find a requested colour when I threw the frogs a few feet away or hid them amongst other toys etc.. All this she absolutely adored and often giggled and screeched in delight as she pelted (crawling at full speed) across the floor to retrieve the thrown or hidden frogs and then proceeding to drag them back and give them to me with immense pride and joy. My heart bursts with absolute adoration for this wonderful being although I must admit to also feeling a sense of disappointment with myself that I was so busy being Slacker Mum at the beginning of the year I didn’t produce this level of stimulatory development play then. I can’t bear the thought that I could have wasted what was still prime brain development time because I was so caught up with her desire to crawl. Hey hoe.

At The Spring School they’ve put her on the MOVE programme (a unique activity-based programme focused on the skills essential to independence within the home, school and community. It draws together knowledge from the family unit, education, therapy and social services in six steps, to teach severely disabled children and adults the skills of sitting, standing, walking and transferring – http://www.themovepartnership.org.uk/the-move-programme) to ensure she has access to maximum movement for her development which in turn will help keep her brain developing. The more she moves, basically, the more her brain will develop. Apparently severely cognitively impaired children thrive through physical stimulation. This is something that Sophia has had forced on her from being 9 weeks old without us realising the long term impact. An incredibly fortunate coincidence. (Obviously some profoundly physically disabled children don’t have a cognitive disability and I have no idea of the impact of movement on such children, although I would work on the premise that anything’s got to be worth a try until proven otherwise.)

And she’s finally happy to be riding again, much to all our delight. The cheers that escalated from the volunteers when Sophia produced a beaming grin of happiness when on the pony was indeed a joyous sound and of course made me ridiculously emotional and I had to turn away for a moment to hide that unwanted drip! She literally settled on her last session before we were expecting to have to ditch the experience. We were supposed to only go until Christmas, but due to her health we missed the last couple of sessions so decided to try again in the new year. She hated it, but on her fourth session, at the 11th hour, she finally smiled and has flourished once again ever since. Now all we have to do is get her to wear her riding hat (oh dear).

And her 3rd Annual Review was as positive as her previous 2, however, this time it took place at The Spring School instead of the Child Development Centre at our local hospital and without our beloved Fiona (Physio) and Katherine (OT). How very dare they be on maternity!!! (I voiced my concern regarding my no longer being involved in the Physio & OT sessions etc. and have been promised more contact.) The review did, however, bring home to me the importance of our need to move house, especially if we are to ensure the MOVE programme is followed through at home as well as during her time at pre-school. I can hardly voice concerns about not having access to Physio & OT when I can’t actually continue at home a major development programme that the school encourage and our house is absolutely not conducive to carrying out this programme. Plus the doorways are too narrow for Sophia’s equipment; there are steps going into every room as well as half-way through the lounge; her bedroom is too small to fit a more appropriate bed for when she’s bigger; the staircase is too narrow to fit a stair-lift; there is no place possible for a through lift and the garden is totally inaccessible.

I love where we live. In the 6 years we’ve lived here I have never, not once, not appreciated the view of the river as I drive along our road, and I have always felt immensely fortunate to live where we do. But we have to move. In the early days, when I first realised the possibility of a time-limit on living here, a very dear friend said to me: “But at least you got to live here, it’s more than most people will ever do.” And when he first said that I thought – “*expletive* you, you don’t understand. Our world’s been turned upside down and I have to move from the one place I absolutely adore. Life *expletive* stinks.” But now I agree with him. We have to move to a more suitable home and I’m now looking forward to finding us that home. It’s another example of – when the time comes, I’m ready.

The human spirit really is remarkable.

3 thoughts on “Sophia’s 3rd Birthday and Annual Review

  1. Can’t speak for the rest of the world but you and Sophia certainly have a spirit that is truly remarkable….onwards and upwards Cate.

  2. Cate, I totally agree you are “ordinary”, but what you have done is “EXTRAORDINARY”! Extraordinary how instead of crumbling on the spot or running as far and fast from Holland as a human could, you grabbed your gorgeous (and she is gorgeous) girl and directed her down a previously untravelled path. On top of that, with all you had going on, somehow you had the foresight to know you wanted to take a whole bunch of us with you via this Blog. Sophia’s inspiring development will only have a chance to become “ordinary” for all children with profound brain damage because you have taught all who choose to read her story that Inspiring Development is possible! Well done, my dear friend.

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