Tag Archives: cognitive development

You know you’re a Premmie/SEN parent when…

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…you have more medical appointments in a week than hot meals.

…the guy who runs the hospital car park occasionally lets you park for free because he is worried about your bank balance.

…you can direct lost visitors to parts of the hospital people on reception have never even heard of.

…you are pleased your favourite syringe made it into the steriliser and is ready for use.

…you have a favourite syringe.

…you don’t just know how many mls of each medicine your child has daily but can convert it to mgs without thinking.

…you can say things like periventricular leukomalacia without tripping over a syllable or breaking into a sweat.

…you are mistaken for a paediatric consultant (this has happened to me: three times in two different hospitals).

…you can speak almost entirely in acronyms (PVL, IS, GDD, IVH, PDA, NEC, CLD, SEN, IEP).

…you use the term inchstones rather than milestones.

…you stop using the word normal (even with air quotes) entirely and say typical.

…6 hours sleep feels like winning the lottery.

…you can parrot huge chunks of ‘Welcome to Holland’.

…you don’t see a child with disabilities and think what’s wrong with them but notice their amazing smile or beautiful face or how funny they are.

…you see what a child can do and not what they can’t.

…you are pleased when dressing or undressing your child becomes a wrestling match because it shows they have the muscular and mental strength to fend you off (see Exhibit A below and I hope he’s not intentionally flipping me the V, by the way).

…the smallest thing (the opening of a hand, the mouthing of a word, an act of mimicry) can make you happier than you ever imagined possible.

…you are utterly floored when your child tries to wave at you for the first time in their life and nonchalantly transfers an object from one hand to another as if they’d being doing it all their lives. Both of these things happened today, and yes, I am writing this post with tears of joy in my eyes.

…despite all the heartache and anxiety you feel lucky and grateful every damn day.

I would love for you to add your own ‘Whens’ to this list. Please use the comments box below. I love to hear from you!Image

Breaking out of Baby Boot Camp

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We have a bit of a vexed relationship with physical activity in Boo Land. Obviously, we realise it’s important to exercise to stay healthy, and as I’ve blogged about before, I’ve found running (to my complete surprise) to be a real mental pick me up since Mr Boo’s birth.

As a child I was never really that into sports. I liked skipping and being outside, but I was always happiest locked away with a book, or better still, a stack of books, or painting, or messing about on a musical instrument. I was a bit hermit-like as a child because, quite honestly, real life wasn’t as much fun as the one conjured in my imagination via books, films, music or art. My parents didn’t discourage me and rather liked that I was a bit of a swot.

Sissyboo is just the same. She pours over books and films and could make things from virtual any medium or object from morning until night. But so that she’s not too much like me (I really wouldn’t wish that on her or anyone), we’ve tried to encourage her to get into physical activities to build her confidence and keep her healthy. But unless it’s swimming or dancing (both of which she loves and is good at in her wild, excited kind of way) she’s not terribly interested. Try as we might, she point bank refuses to ride her bike, partly in protest that her Dad spends rather a lot on time on all of his. Oh yes, he has a few. OK, a lot. They are the 5th, 6th, 7th, 8th, 9th and 10th members of our family.

It’s all about balance isn’t it, I suppose? I’m not sure, judging by Sissyboo’s ball skills (at 5, she reads like a 6-7 year old and catches like a 3-4 year old) that we have got it right. I’ve always gone along with her interests rather than force others on her. But I suppose it helps that her interests and mine chime with one another. If I’m honest, I’d much rather she grew up like Roald Dahl’s Matilda (her literary heroine) than Martina Hingis.

Hmm. I hadn’t expected to write that sentence. Maybe we haven’t really been going with the flow in bringing up Sissyboo. I can see we’ve made certain choices, set certain priorities. She’s a lovely and well-rounded person (much more than i was at her age) so it seems to have worked out OK, so far. Phew! We’ve got away with it.

But what about when choices are made for you? By circumstance. By illness. By disability. Where you have to get with a programme (or in our case several programmes of therapy and intervention) to achieve just some the building blocks of childhood development, let alone to finesse them. What happens when you don’t have the luxury of choosing how to parent or what aspects of your child’s personality you want to nurture?

Physio is a huge presence in our lives. We have been recommended to have at least 2 30 plus minute intensive physio sessions with Mr Boo every day. In between, at every nappy change, I stretch his hamstrings and have learned to ‘handle’ Boo therapeutically. (For the record, I hate that I have to ‘handle’ my baby as opposed to just hold him.) So once you take these sessions out of the day, add on milk feeds and meals, and a couple of naps, the day is kind of gone and there’s little time for anything else.

Having thought I would go with the flow with Boo–that I wouldn’t impose a routine on him, that I would cultivate his love of playing, music and words–we live instead in a baby boot camp. The second thing Sissyboo said to me when she got out of school yesterday was ‘Has Boo done his exercises today?’ Yes (cringe), I am that Mum. Call me Major Boosmum, Sir, yes Sir!

Therapy looms large in this house, not least over poor Sissyboo, hence her question yesterday. She asked me about Boo’s exercises because she wanted to know if his physio was out of the way to make space for more fun things involving her. That makes me sad. I truly fear the consequences of not doing enough physio with Boo, of not filling every minute with therapeutically-minded handling and positioning that might help him attain his physical milestones. But Sissyboo needs me too. Her development (social, emotional, intellectual and physical) is just as important. The juggling is so hard. I wish I knew how to get it right. (Answers on a virtual postcard, please.)

In the half-term holidays last week I really tried to get something nearer to equilibrium. I made sure there were times every day when I did things that were solely organised around Sissyboo. We played outdoors, went to the park, but there was also lots of drawing, making, and reading. Best of all, we made a trip to the theatre for an audience participation production of Wind in the Willows. We had so much fun.

It was also a revelation. Sissyboo loved learning the songs and joining in with the show. She laughed at Toad’s crossdressing, snarled and hissed at the weasels and cheered on Moley, Ratty and Badger as they triumphed over the baddies and reclaimed Toad Hall and the riverbank. I could barely watch the show for watching her excitement.

But the bigger revelation was when I turned to look at Boo who I’d dragged along, and who I worried should probably be vainly practising his rolling for the 9th month in a row rather than sitting scrunched up on my lap in a germ-ridden theatre. He was hysterical. Totally and utterly I-needed-to-remind-him-to-breathe hysterical. He was laughing at the antics on the stage, squealing as we sang and giggling at the faces his sister was pulling. I swear he got at least as much out of the experience as the rest of us. And why wouldn’t he? This is no revelation. He’s my son and Sissyboo’s brother, after all. This is our idea of a perfect day out. Why should he be any different?

And then it hit me. Yes, Boo needs physio. Yes, he needs to be consistently handled in a therapeutic way. But cognitively, for the moment at least, Boo seems to be engaging with the world as a child his age should. This may change, we know that, but for now, his brain is several months ahead of his body. And I have been neglecting this aspect of his development when compared to the astonishing amounts of time (although I never feel I do enough) spent on reaching those elusive bloody milestones.

Sure I sing to him (a lot) and talk to him (a lot). (Like the sound of my own voice? Moi?) I do read him books (he loves noisy ones, like the edition of Room on the Broom that has sound effects), but I snatch these moments guiltily as if they’re more for me than for him, as if we’re doing something naughty.

How ridiculous! Cognitive workouts are just as important as physical ones. In not realising that before now, I’ve been stifling aspects of his personality that I want to celebrate, the things that make him my Boo. To my shame, I realise I have been inadvertently doing what I constantly berate others for doing: of seeing him through the lens of the physical challenges he faces rather than through his developing and totally adorable (OK, I’m biased, but honestly, he is) personality.

Baby Boot Camp is going to continue for the foreseeable future, but not, I’ve decided, at the expense of nurturing Boo in other ways.

Thanks Boo. Another lesson has been learned. Right, let’s go blow the dust of your library card, mate.