Apr 042014

Jack was three in December.  Over the past year he’s continued to do well and exceed our expectations.  The terrible twos’ have been tricky at times (help!), but we think this is more to do with personality (Jack remains very independent!) and age rather than sight. 

This year we have seen Jack’s head wobble more, particularly when he watches TV and tries to focus on things in the distance.  We‘ve also seen vigorous eye movements on an afternoon/evening as he’s started to fight his afternoon nap with a vengeance.   And yet although we’ve seen, we rarely notice – it’s just “our Jack”.

With Isaac and Fletcher not having nystagmus, we‘ve also had more to compare Jack’s with.  Isaac points a lot when communicating which Jack rarely did.  And Fletcher gazes directly into my eyes for long periods whereas Jack was always more interested in staring at the ceiling or out of the window.  I know this could equally be down to personality as we’ve learnt all three boys are very different already!

Jack is very active and likes to do things “by his self”.  We go for regular walks and he happily runs alongside us to keep pace.  He’s also good on his scooter, which he mastered straight away.  He loves baking scones and cakes, and has recently fallen in love with Peppa Pig – which he asks for over and over.  His other TV favourites are Mr Tumble, Cars, Toy Story and Monsters Inc.

Isaac loves eating food and would eat non stop if we let him.  He’s very caring and tries to make Jack and Fletcher feel better when they are crying.   We have officially named “Isaac Cuddles” (whole body cuddles with arms and legs wrapped round) as they are so special!  Isaac is approximately six months ahead of Jack with his speech which we think is due to having his brother to copy from.

Fletcher is smiley, and talkative – he babbles constantly in different pitches to command our attention.  He’s crawling now and has his fourth tooth poking through.  He loves practising standing and cries every time we sit him down.  He watches Jack and Isaac with envy and desperately wants to join in – not long now!

A few further things we’ve noticed about Jack that may or may not be related to the nystagmus;

– When he is tired on an afternoon there’s lots of testing barriers.  Now Isaac is nearing two and starting the “NO” phase, Jack seems better behaved in comparison so we’re hoping it’s just a phase.

– When he watches tv he stands with his face right at the screen.  Everything we’ve heard/read suggests we should let him position himself where he wants but both our Mum/Mam were concerned that this may cause more damage from the glare than good.  I checked at our last eye appointment and was told we are right to let him stand this close if he chooses.

– He doesn’t like fast moving scenes on TV e.g. when he watches The Snowman and the Snowdog (sequel to The Snowman), about 15 minutes in when the characters start flying through the air he gets frustrated and either says “stop it, start again please” or moves away to do something else.

– About a month ago he ran into a door frame.  He was tired and running a wobbly course towards it, but I couldn’t stop him in time.  He usually runs fairly straight.

– He loves lights.  A great trip out for us is the lighting department at stores like Ikea and Wilkinsons.  If he’s able to turn the lights on and off even better!  We’ve been to some parties recently with disco lights and he likes standing right in front of them watching the changing colours.


We’d like to say a huge thanks to everyone who has been in touch and supported us over the past year.  We love hearing your stories and what has worked well for you.  Have a great 2014.

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