We often get people say to us that they are 'sorry' for us and what has happened to Noah, but we always say that they shouldn't feel sorry as we love Noah and actually feel very lucky to have him in our family. We hate it that he gets sick etc. and our lives definitely are not what we had planned - sometimes it would be nice to just do 'normal' things, but we wouldn't change him for anything.
I often remind people that Noah is very loved and well cared for - just look at all the women he has pampering him all the time!! How many other people get massaged each and every day?
Yesterday at school Noah has both of his aides together with him - all day! Usually Di is his aide from Wednesday to Friday and Angie is his aide on Monday and Tuesday. Because he had a couple of days off sick last week, Di also took a day off so she could make it up on the Monday, so she could spend some time together with Angie. It was a good chance for both of his aides to work with Noah on the same day, to share ideas with each other and to just make sure that they are on the same track with what they are doing.
Noah was very spoiled all day long. Di and Angie are both very different, but both are so great with him. Di knows him very well and actually worked with him at home, as his In Home Support worker, before she became his aide at school. When we were discussing with the school about Noah starting, I joked with the Principal that I knew someone who would be a great aide for him. He said I could ask her if she wanted to be his aide and lucky for us - she did! It worked out so well as it meant that he had someone who already knew him - including what to do when he has a seizure (usually between 3-10 a day) and how to tube feed him. During In Home Support she usually massages him, does physio therapy, takes him for walks, plays with him, makes up his feeds and baths him - she comes after school two nights a week, which allows me to take Jalen to basketball and different activities, without having to worry about Noah as well.
Noah's other In Home Support worker is Bridget. She has been working with Noah now for just over three years. She also does 4 hours a week at home. This year she helps get Noah ready for school two mornings a week, and also does physio therapy and postural drainage - lots of banging on his chest and back to keep his chest as clear as possible. Noah loves it when she does the postural drainage and always smiles. Bridget just got engaged and is going to be moving to Hobart at the end of the year so we will have to find a new In Home Support Worker. It is always hard to change workers. It took us a long time to actually ask for support in the home as you lose your privacy and it is hard to have other people in your home on a regular basis - although they do become your friends after a while. It is just hard to have new workers who we have to train up all over again.
Some people are not very confident with Noah at all. At school they have a roster of different teachers who take Noah for half an hour a day while his aides have their lunch break. At the beginning of the year the Principal was going to be doing it once a week, as well as the Assistant Principal and the Support Teacher. After a couple of times the Principal decided he would rather do duty in the 'time out room' at lunch time, than be with Noah as he was very nervous around him!! We all stir him about it - saying that he can handle the kids with bad behaviour, but not Noah!! Noah often has seizures or vomits or coughs and almost chokes and you often have to intervene to help him through it. A seizure or two and a couple of coughs was too much for the Principal! The Assistant Principal is also funny - she is confident enough to be with him, but not to go too far from his aide! She only sits around the corner on the computer from the aide so she can grab them for help if anything happens.
So we are very lucky that Noah has such great aides at school and also such great help at home too. He is very well looked after and loved :)