Ups and downs

The ups and downs continue even as V has been weaned off all medication. This past week he had a virus. Now, for several months, when he has caught a cold, the cold is not a running nose. He might wake up with a stuffed nose or he may blow his nose sometime through the day. He might cough a little. This week, however, was different.

Monday was a difficult day for him in school. It has been almost three months from the start of the school year. He has gone for the past six weeks without a single break through the day which is soooo very different from the past two years where he needed fairly frequent breaks, last year less frequently than the previous. Monday, he had to be given a break as also Tuesday. On Tuesday in addition to the break, he had a meltdown in school. I was at a loss, thinking maybe because he ate out more often than he normally does on a weekend, even though I monitor all the food he eats. Wednesday was his hardest day, having to work 1:1 with his aide through the day, and not with the class. On Wednesday evening, his cold started - bingo! It was not any food, but his body was trying to figure out this virus which had attacked. This was always the period I dreaded the most the past five years. The good part is that he didn't have any active seizures, but he did have two difficult nights - lots of jerking and restlessness, sensory issues going on. The poor boy - he didn't even know this was going on. The cold was so bad this time that he was blowing his nose almost non-stop and woke up on Thursday morning at 5:40 a.m.. I checked in with him about school and he replied, "No. I have library today and I wouldn't want to miss it."

Once the cold actually starts, he does better and sure enough, his day was way better. It is still- take one day at a time - almost - and this season can be the worst. Fortunately for us, his body has been good about repelling viruses. All those extra vitamins through his food can make a world of difference. Until the next time that it may hit this season, I am enjoying his good weekend...

The next month

So, a whole month has gone by and more after the last medication was administered to V. He is doing just fine under the circumstances. His brain seems to be taking leaps in catching up with all of the deprivation so it seems. For example, he is obviously learning compound words in school. I had no idea till he asked me if journalism is a compound word and we talked about the differences between compound words and words with suffixes and prefixes. So, the day went on and then towards the end of the day we were watching something and then he suddenly goes well, boyfriend is a compound word and so is girlfriend. I mean things like this are miracles to say the least. Not only is he able to absorb what is being taught in school but also, he is able to retain the information, think about it actively, relate it to other things he is experiencing and connect. I mean, that is so wonderful, I would have never dreamed of it. These are small, simple pleasures that keep me going.

He loves school, his teacher this year is so very understanding of his needs and accomodations, it is absolutely wonderful. Not only do I not have to ask for anything, on her own, she realises and lets us know about assignments that he will need more time. He is really happy, is just so getting back to his old self. I mean, he was happy through his bad times but now, he just seems differently happy.

I still worry when he gets emotional or worked up because he used to work himself upto a frenzy so that he would get seizures. He was highly worked up last night and it took me over half an hour to calm him down, all along worried that he would work himself upto a frenzy. All along, I need make sure that I keep calm, that I don't show him that I am worked up, that I have a calm voice and hand, all along soothing him to ensure that he gets the right message. He does have to hold it up in school and that's why he tends to have more of these meltdowns at home which is kind of alright given that he can only do so much and physically he is exhausted by Friday.

R does show signs sometimes of jealousy, despite an effort on my part to try to stay fair. Every once in a while she needs a reminder that not everyone's brain is like hers and that there is some accommodation she needs to make for his differences. It is a high expectation of her and it does seem unfair sometimes when one sees other ten year olds who do not carry the same responsibility but then why should everybody undergo anything similar?

Meanwhile, life carries on. Diwali and Halloween just went by. Thanksgiving will be here soon.