Saturday, March 24, 2012

World Down Syndrome Day party

March 21st is World DS day - the 21st day of the third moth standing for the 3 copies of chromosome 21. It is also the anniversary of Paul and I getting engaged, Paul very romantically chose the first day of spring (as it is in the northern hemisphere) as he liked the song "If I ruled the world every day would be the first day of spring." We got engaged 34 years ago.
Yesterday the zone 21 youth group here put on a party for all the families who have a child with DS in Palmerston. People had to wear orange and purple which are the colours of the NZDSA. It started at 6pm and Noah and Isaac lasted over an hour before Isaac nearly fell asleep and Noah's behaviour deteriorated and he punched Hannah.
We can tell things are returning to normal by the way Noah is no longer so well behaved - I think when he was sick he was really quite afraid and felt the need to behave so we would look after him (and perhaps didn't have the energy for many exploits).
He is back to saying (or shouting) "NO" to those demands which mean a quick change of activity or leaving his Ipad, and got into trouble at school for being uncooperative like this to his drama teacher - he had just returned from an out-patient visit and abdominal X-Ray so his was pretty disrupted with presumably a few bad memories.
Obviously the whole time of being sick has had a major impact on him and the other day when Lily said she had nightmares about were-wolves Noah said "I had a nightmare that my stoma had come out and wouldn't go back in". He often asks where 'Oswald and Epic' (his pet names for his stomas) are now. I told him they are back inside where they belong and he said "Does that mean I am pregnant with Epic and Oswald?"
He was also obviously a bit upset about his rectal prolapse and tells us to be careful when we do his washouts, he is scared to push very hard when on the toilet now in case 'the phantom blot' reappears - you need to know the wii game 'Epic Mickey' to understand his naming of his prolapses!

1 comment:

Karen said...

I hope you all had fun at the party (for as long as you stayed) - sorry that Lenny and I couldn't make it. Karen.