So after this weekend and after answering these questions I have one word that summarizes Jason and how I feel "hopeful"
I look at Jason and despite everything I see such hope in him and I am so hopeful for his future. My last update was when we ended up staying overnight with fevers after his polygam infusion and it turned out he had bronchitis. Well yes he did have bronchitis but he managed to fight it off without extra antibiotics (he is already on a chronic antibiotic) and without a long hospital stay. We continued with nebbing him at home and continued with his nose sprays and meds but he avoided hospital which is huge.
One thing I firmly believe in with our situation and with anyone in a similar situation to us is don't constantly dwindle on the past. If you had to constantly think about what has happened you would not be able to move forward and progress in life. We have been through a lot with Jason, a lot of which we can stress and worry and go "boo hoo poor me" but we don't (well we try not to anyway). I try and learn from what has happened and move forward. I firmly believe that if you constantly look at the bad and the negative, your whole outlook on life will be stunted and your future stuck in the past.
I see how far Jason has come, I see how well he is doing, I see how much he tries and I am so proud of him. I am so hopeful for his future and seeing what he is learning at school, how well he is talking and enjoying life. This gives me huge hope.
Today we managed to go to the crocodile farm without a gagging episode. The funny thing is two people actually asked me how he coped with it and honestly I had forgotten how he would have reacted in the past. In the past there is no ways he would have coped with going there. First of all from a sensory point of view, the smells and sensory input would have been way too much for him and secondly he would have started gagging, sweating and probably vomiting and scaring the living daylights out of everyone including those huge crocodiles. We had none of that, all we had was our little boy running around as excited as can be, taking everything in and having the time of his life - a "normal" day :-).
This afternoon I did his homework with him and it's amazing to see what he is learning and how he is progressing. Never in my wildest dreams would I think he would be learning to read and he is. He is learning to read, he has learnt the art of the pencil grip and he is loving every minute of it. It is so rewarding seeing how well he is doing. Thanks to his awesome teacher, therapists and school that put in hours and hours of hard work with Jason. This is one thing I have learnt with special needs. Don't let your child be left behind in a "normal" school just because you long and want them to be "normal". Bruce and myself were so scared and so reluctant to put Jason is a special needs school but at the end of the day it was the best thing we have done for him. They don't get the stimulation, the care and the attention that they need at a "normal" school. Jason's school day is crammed with therapy. Everything they do is therapy, from working to eating, to playing and it's amazing the progress you see.
So here I am waffling again - I can't help myself!! I just speak my mind and say what I am thinking. Tonight I am thinking "YEAH I see so much hope"!!!
Just check out Jason reading and learning his colours - click here
and check out his amazing school - click here