Fragile X Awareness Day 2016

Thought I’d take a moment to reflect on all the things both my kids have achieved over the past 12 months.

Sir is now in Year 8 at school and apart from a few teething problems he has settled into his new class very well. At the moment his major problem is actually going into the room first thing, once in there he’s fine. He does this every now and again, we’ve never really got to the bottom of it, currently he is being bribed with the promise of water play πŸ™‚ It works and to be honest, what parent isn’t above a little bribery to make the wheels of the day turn smoothly. He is toilet trained at school.. but not at home.. still a work in progress. He seems a lot more confident lately, I’ve had a couple of really nice conversations with him. He is also starting to tell us what is wrong when he feels frustrated or upset which is good. Yesterday I found a game under his bed that hasn’t been played with in years, he got all the stuff out and started to play with it. It was a Kerplunk style game, but with plastic monkeys instead of marbles. Madam and I played too, it was really nice.

Madam is in Year 5 and we have agreed she can go on a residential trip in April next year. That has meant she’s ditched her night pants and I have to say she has done really well. Last night she had a bit of a funny tummy, I told her that if she wanted she could wear her night pants just for that night if it made her feel more comfortable. She said no, she wanted to wear her stripy ones πŸ™‚ She was very grown up about it all. In fact this past few months she’s become a lot more grown up about a lot of things… and is growing up physically as well. Can’t help wondering where my little girl has gone.. πŸ™‚ She’s okay this morning though and has gone to school. We are in the process of deciding on a High School for her, we would like her to go to the same one as Sir, they have different classes according to ability/disability but they are smaller and give more one to one attention.

The thing is with our Little Dark Horses is that everyone will tell you they can’t do this or that or the other thing, but give them time and they will. When Sir was first diagnosed we were given the impression that the future was bleak, but it isn’t. He can ride a horse, he can sail a boat, he can do more with a computer than I’ll ever know how to, he can talk, he’s extremely bright, he only has to see you do something once and he’s got it. He more or less taught himself to swim, he can ride a bike, he’s funny, he loves cuddles, he’s very empathic, he can make a cup of tea, he’s using his imagination when he plays, he can be stroppy, he likes his own company sometimes, he’s very domesticated! loves to help with housework, he’ll make a lovely husband! LOL!

Madam has the floppiest ankles ever seen, instead of standing at ten to two she stands at quarter to three.. but that doesn’t stop her doing anything. She rides a horse, bounces on the trampoline, runs at a million miles an hour, dances, does her best at PE and loves swimming. She tries hard at school – she’s even starting to like maths a little bit, just don’t mention the 12 times table to her.. – loves reading, loves to watch Bake Off, goes to gardening club after school, can be a 9 year teenager.., but can be very cute and funny too.

For more info go to

Follow @fragilexuk on Twitter and Instagram




2 thoughts on “Fragile X Awareness Day 2016

  1. vswamp27

    Karen, I got wet eyes reading your post. So happy the kids are progressing so well. Bless them. BTW I do not know what ‘stroppy’ means.

Leave a Reply

Please log in using one of these methods to post your comment: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.