More!
My boy said 'more' yesterday! Clear as a bell, and at the same time as he made the sign. Andrew and I stopped and looked at each other to be sure we'd just seen and heard it right.
It's the little things that make my day. :)
In early 2011 my son Connor, was diagnosed as Autistic and Mosaic Fragile X, he was not quite 2. It was both shocking news and an explanation of the incredibly hard few years that had led to that point. But I knew, that was just the beginning for us, we still have Connor's whole life ahead of us and since then his baby sister Merryn has also been diagnosed FXS.
My boy said 'more' yesterday! Clear as a bell, and at the same time as he made the sign. Andrew and I stopped and looked at each other to be sure we'd just seen and heard it right.
Last night was one of the worst nights I've ever had with Merryn. She went to bed OK, but was awake by 9pm. By 10:30pm, both Andrew and I were getting cranky with each other from the stress of her constant screaming and Connor had been woken up in the process. If you went in and cuddled her or patted her in the cot she would settle to sleep, but 5min later she was going nuts again.
Over the past month Merryn has gone from being easy to put to bed for her daytime sleep and in the evening, to a screaming banshee. No amount of breastfeeding, cuddles, leaving her to settle, back and forth or any other technique known to man or beast works. She just goes nuts.
Connor has started to sing!
We are trying a new application for the iPad to help Connor communicate. The app is called Sounding Board and the Speech Therapist has recommended we try this approach because the PECs and sign language attempts have been largely unsuccessful. Although Connor does use one or two of the cards, he ignores them mostly and won't use any but the few he really likes. This has made it impossible to expand on it and use it as a communication system.
We have been doing quite well working through all the anxiety stuff.
We were featured in a story in the September edition of MiNDFOOD along with two other families who also have inherited genetic conditions. The stories of the other two families made me cry. As always I'm just so relieved that we get to keep our kids and don't run the risk of them dying of this condition. Just click below if you'd like to have a read.
The whole assessment has been completed. They ended up doing a full Bayley Assessment (a series of measurements to assess cognitive, fine and gross motor skills and receptive and expressive language). As I mentioned she did really well in the cognitive section. The results for fine motor skills were good too. The other three sections were below average though and bordering on very bad. Basically she isn't great at understanding what is being said and she can't tell us what she wants (other than by screaming at me, which she does often). She also has trouble with things like stairs because her gross motor skills are delayed.