Wednesday, 21 March 2012

Aaaand I'm Back...

I've been a little lax with my blogging since December. It's always such a busy month and we've had lots going on since then so it sadly had to take a backseat. But I'm back with a vengeance and intend to keep it updated as often as possible. Much has changed since I last blogged yet in some ways things stay exactly the same. Maybe that's an indicator of having a special needs child.
 Our biggest change is Bee is that walking confidently without the aid of her walker. She's still a little wobbly sometimes and especially clumsy when she's tired but in the main she walks everywhere now. I can't tell you how thrilled we were. More than thrilled. Even now, months later, I watch her toddling round the living room or down the aisle at the supermarket and marvel at how far she's come. Bee revels in her new freedom and it's created some challenges for us in how to deal with a very strong-willed toddler who wants to go left when you need to go right. We've invested in a LittleLife Daysack (the bumblebee design of course!) and I highly recommend them. Even if it did take Bee some time to realise that the handle is for us to hold, not her!

We've always considered ourselves very lucky when it comes to Bee's behaviour and thanked our lucky stars when the 'terrible twos' never materialised. She's always in a good mood and very rarely cries, unless there's a good reason. She says 'please' and 'thank you', most of the time without needing to be prompted and is generally charming and sweet with everyone. Or so we thought. We've recently seemed to hit the terrible threes. On top of this Bee has learnt how to be devious, highlighted in a recent trip to my Grandparents. We change her nappy on the bed there and she also likes to bounce on it when supervised. Whilst sitting in the living room chatting and drinking cups of tea Bee came over to me and asked:

"Mama ba" (mama bed)
"No Bethany, we can bounce on the bed when the drinks are finished"

And with that she toddles off so I rejoin the conversation. Minutes later I felt a small hand on my knee and looked down to see Bee, with a nappy in her hand and patting her bum. "Mama ba". You devious little minx! But clever at the same time, very clever!

So now we're having to become requainted with our toddler. Her likes and dislikes have changed, she's tolerant of and aversive to things she wasn't before. It's been a challenge as through all this her speech delay is still causing us some communication problems. She gets very frustrated when she can't express to us what she means or wants.

Something that hasn't changed a great deal is Bee's compulsion habits. We still have to close doors behind us, sit in the same seats in the living room, read the same book over and over again...the list goes on. Sometimes it can be difficult finding the line between accomodating her obsessions and not reinforcing them. It's hard to know where one ends and the other begins, especially when we know it's something she can't help.

Health-wise Bee has been doing very well, with just the one nasty bug over Christmas which landed us in the emergency GP's on Boxing Day. She seems to be much stronger these days, although with a constantly snotty nose (thanks nursery!)

Talking of nursery: Bee loves it. She is now asking to go every day using the Makaton sign for 'nursery'. We're really happy about it as she struggled to settle at first and would scream and cling. Her confidence has soared since starting there and we're really hopeful that Bee will be able to attend mainstream school.

Overall our girl is coming on really well, exceeding everything we were told to expect for her. The fact that we're even able to think about mainstream school is testament to what a clever, strong, beautiful daughter we have. Love you Bethany May xx

1 comment:

Toni said...

Clever Bee! Clearly her mother's daughter :) You should seriously consider contacting the day time TV programs to tell Bethany's story and raise more awareness of Kabuki Syndrome. I know you do a lot through the website, but people need to hear about success stories like yours. I have a feeling that this young lady will accomplish great things!