[ Post a Response | ECHO Dialogue ]
Posted by pippa duffy
on April 24, 2009, 22:03:55, in reply to "22q deletion"
81.145.108.74
Evening Amanda
I'm so glad you had a fruitful session today. It sounds like you've got a great candidate to join 'Team Lucy'!
I use Maketon with my girls, and have been amazed with how much Jazzie was communicating with it at an early age. And we have fun with it too. Last week, she was offering me some of her plum. She offered it to me by using the 'food' sign and raising her eyebrows at me, saying 'Mummy, pum?' and then when I said 'yes please' she looked at me, and made the 'please' sign, and looked at me expectantly, so I had to sign 'please'. Then she made me say 'thank you' and also 'more'! I am on the waiting list to do the Maketon signing lessons, as I'll definitely be using it with Leo. I can already see that his ears get full of wax, so I think his hearing will deteriorate, as is very common with Tri21. But aside from the Tri21 aspect, it has been so helpful with the girls, so why would it be any different with Leo? It has definitely avoided some of the frustrations that youngies have when they are trying to communicate but haven't got the language skills. It's also handy as a communication across a busy playground!!
We also went to the Physio a couple of weeks ago, for Leo's first assessment. She was lovely, and I immediately made it clear that Leo HAS Tri 21, and IS NOT a 'Downs' Baby'! She was really sweet with Leo and said that her assessment will take a couple more sessions, but that she can see that he has hyper-extending joints, and that his muscles are hypotonic (under-toned). I guess I knew this, but I find that seeing him through somebody else's eyes brings me the reality of awareness that he is quite floppy and very small versus other babies of his age. I've had quite a few people cooing over him recently and then being surprised when I say he's 5 months old, and on holiday last week, there was a little boy of 12 weeks and he was bigger and looked 'older' than Leo. I guess I just see Leo when I look at him. My perfect, gorgeous, smiley, couragous little boy! When we bathed him tonight, I tried to look at Leo objectively, and I can see that his body is still very small and he's very scrawny, aside from his bloated belly (my baby dinosaur!) but then I just want to stop and wrap him up and hold him close, because I think he gets enough of people 'evaluating' him without his Mummy doing it too! I think I realise now that as the weeks go by, Leo's differences are more obvious, and I don't have issue with that, and it's important that as much as I don't want him to be set apart as 'special' (i.e. a PC way of saying disabled etc.) it's also important to have an accurate perspective of where he really is and what his needs are. Otherwise how will I know how best to support him in his development?
I feel that Leo has come on really well in the last few weeks. He's cooing and very alert, follows me wherever I go in the room and adores being kissed! He's able to lift his head a little and shows me that he wants to be helped into sitting position and although he can't quite look up into my face, he can hold his head and look straight ahead. He's also discovered his legs and is now doing those kangaroo kicks when he's on his playmat, and grabbing the dangling toys or trying to kick them with his feet!
I just long to be 'on the other side of the mountain' that is his OHS, but I know that everyone reading this will know what that feels like. Bowel appointment on Monday, so at least we can start to find out what they plan to do about it and when.
Do keep me posted on Lucy's progress and also any other stuff that you learn via the CDC. I imagine you feel pleased to have got some 'data' that validates your own instincts.... plus a starting plan to take Lucy forward! x
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