This being the national month of epilepsy, there have been a few articles.
1. The Boston Globe
2. The New York Times
Sunday, November 21, 2010
Thursday, November 11, 2010
Epilepsy Awareness month and an interesting point
This is Epilepsy Awareness Month. So I was posting the link to my fb profile while V was reading next to me. As I included the link, I put in a comment saying that I hope that there is a cure sometime. He was reading what I was writing which I didn't realise and he then added after I put in the comment, "Me too". That was so very touching - this is something he thinks about and wants but has never openly expressed it until this time.
Basically, he and I have talked quite a bit about why he needs a restricted diet, the consequences, when he was on medication and why, etc. He once said to me about a month or two ago - I wish I was not this way, I wish I was like the other kids being able to eat anything and it did break my heart but he did it in a very practical way.
His tenth birthday is coming up. He was checking with me what treats he should take to his class. We went through a few options. At one of the options he said that once a girl brought those treats in and everyone except him could eat it (his class has other kids with dietary allergies and restrictions); he said it without remorse, without desire. It was simply remarkable. He hadn't even felt bad about it or I would heard about it that evening at home.
Something similar happened at a birthday party two weeks ago. This friend of mine said to me that he was absolutely amazed at V's ability to refrain from treats and that his maturity on that aspect was impressive. So, even though it might feel like he is being denied and deprived, he really knows the consequences, is able to understand them and knows that we are doing what is best for him. It is something I can really learn from.
Basically, he and I have talked quite a bit about why he needs a restricted diet, the consequences, when he was on medication and why, etc. He once said to me about a month or two ago - I wish I was not this way, I wish I was like the other kids being able to eat anything and it did break my heart but he did it in a very practical way.
His tenth birthday is coming up. He was checking with me what treats he should take to his class. We went through a few options. At one of the options he said that once a girl brought those treats in and everyone except him could eat it (his class has other kids with dietary allergies and restrictions); he said it without remorse, without desire. It was simply remarkable. He hadn't even felt bad about it or I would heard about it that evening at home.
Something similar happened at a birthday party two weeks ago. This friend of mine said to me that he was absolutely amazed at V's ability to refrain from treats and that his maturity on that aspect was impressive. So, even though it might feel like he is being denied and deprived, he really knows the consequences, is able to understand them and knows that we are doing what is best for him. It is something I can really learn from.
Sunday, September 19, 2010
Different food choices
So, over the past year, V's food choices have expanded. Due to the fact that his options were so very limited, we started coming up with new ideas; several were his own; as he was growing, his appetite was growing too and so were his taste buds. The following got added to his diet:
1. Pizza: He will eat all the toppings of a pizza minus the crust. That way he derives the satisfaction of eating a pizza. Every Friday for over six months, he has been ordering pizza at school on pizza day. He gets a slice; eats the cheese and pepperoni; I asked him how that was enough; his response was that he anyway eats the carrots and milk that go with it and maybe apple. So this is working well; once a week I make pizza for his lunch or dinner.
2. Melted Cheese: He melts cheese either in the toaster oven or in the microwave at a consistency that he desires.
3. Eating salad with melted cheese.
4. Eating the inside of a dumpling for instance.
I hope to keep adding to this list.
1. Pizza: He will eat all the toppings of a pizza minus the crust. That way he derives the satisfaction of eating a pizza. Every Friday for over six months, he has been ordering pizza at school on pizza day. He gets a slice; eats the cheese and pepperoni; I asked him how that was enough; his response was that he anyway eats the carrots and milk that go with it and maybe apple. So this is working well; once a week I make pizza for his lunch or dinner.
2. Melted Cheese: He melts cheese either in the toaster oven or in the microwave at a consistency that he desires.
3. Eating salad with melted cheese.
4. Eating the inside of a dumpling for instance.
I hope to keep adding to this list.
Night terrors again
So after being event free for several months as far as seizure activity goes, the night terrors happened three weeks in a row, once a week. No idea what might have triggered them. Tried different food combination elimination possibilities and tried different sleep patterns. So far, the past week was uneventful. Lets hope it continues that way. After all, life would not be half as exciting without its challenges!
Saturday, April 3, 2010
Far too long; first time in public
I have stayed away from this blog for far too long. V is having an excellent year; really enjoys having a male teacher who has a great sense of humor. He has had his ups and downs of course. Several things are still day to day and it has become for us commonplace to realise that and take each day as it comes. The good thing is that his teacher realises that he has to take one day at a time and that makes life easier for everyone.
Not only is V doing reasonably well on the academic front (reasonably when compared to the rest; compared to where he was at, he is doing fantastic), he is doing scores better socially and emotionally too. He has a couple more friends which is huge. He is actually trying to play some games at recess, not just stay in the sand box. These are huge leaps in his social growth. Not sure where this will be in a couple of years but we'll see when we get there.
V does still tend to be on the immature side when compared to kids his age; he doesn't realise that he is bothering someone; others get really flustered when he comes near, leave alone say anything. It is a viscious cycle and not one that we are to solve in the near future.
Thanks to a co-worker, I organized a fundraiser for epilepsy to raise awareness and to try and start giving back. It was a small group of friends and coworkers. Was very good. I was surprised at myself giving a small presentation, but it was a small group, in my own home and I didn't really get into details which may have been harder.
This past week however, for the very first time I spoke in front of an audience in a public setting. Apparently, there were 250 people. It was a different discussion, I was bringing up the issue of seeking support, talking openly when your child has a difficulty, health or learning and being able to cope with that. I had 3 minutes to talk, was very nervous and debated several times whether to bring in my personal piece. Without that I decided that the little speal I had was not worth its value. So I went up there, the sentence where I said "On December 31st, 2003 when my son had his first seizure..." and I could hear my voice starting to crack, so I told myself I couldn't let that happen. I went onto completing that sentence without a crackling, didn't go into details, because I didn't trust myself to complete what I had to say calmly and finished the rest.
The next morning I was feeling physically and emotionally drained. All I did was stand there in front of an audience for three minutes. The only sentence was about V's first seizure and how we need to seek support. The buildup to it all, to talk about it in public calmly and have people advocate for themselves - it was too much for me to handle. I haven't felt so mentally tired in a very long time. I was feeling so alone, and still am. All of the past seemed to come crashing down on me; I feel like I am carrying this heavy load. And yet, this should not be about me. It is about V and how he suffered. I can't explain how I am feeling but I have this thing that I need to continue on this mission of helping other parents to learn to accept, to listen, to work with their schools, to seek support. It means I have to build up my mental make up. I considered myself to be a very strong person. And I have come down in a crumbling heap with those 3 minutes. I was barely holding it together for two days, especially when people said to me - what an act of courage - I guess it was but I wasn't looking at it that way. There is a lot more work to be done.
Not only is V doing reasonably well on the academic front (reasonably when compared to the rest; compared to where he was at, he is doing fantastic), he is doing scores better socially and emotionally too. He has a couple more friends which is huge. He is actually trying to play some games at recess, not just stay in the sand box. These are huge leaps in his social growth. Not sure where this will be in a couple of years but we'll see when we get there.
V does still tend to be on the immature side when compared to kids his age; he doesn't realise that he is bothering someone; others get really flustered when he comes near, leave alone say anything. It is a viscious cycle and not one that we are to solve in the near future.
Thanks to a co-worker, I organized a fundraiser for epilepsy to raise awareness and to try and start giving back. It was a small group of friends and coworkers. Was very good. I was surprised at myself giving a small presentation, but it was a small group, in my own home and I didn't really get into details which may have been harder.
This past week however, for the very first time I spoke in front of an audience in a public setting. Apparently, there were 250 people. It was a different discussion, I was bringing up the issue of seeking support, talking openly when your child has a difficulty, health or learning and being able to cope with that. I had 3 minutes to talk, was very nervous and debated several times whether to bring in my personal piece. Without that I decided that the little speal I had was not worth its value. So I went up there, the sentence where I said "On December 31st, 2003 when my son had his first seizure..." and I could hear my voice starting to crack, so I told myself I couldn't let that happen. I went onto completing that sentence without a crackling, didn't go into details, because I didn't trust myself to complete what I had to say calmly and finished the rest.
The next morning I was feeling physically and emotionally drained. All I did was stand there in front of an audience for three minutes. The only sentence was about V's first seizure and how we need to seek support. The buildup to it all, to talk about it in public calmly and have people advocate for themselves - it was too much for me to handle. I haven't felt so mentally tired in a very long time. I was feeling so alone, and still am. All of the past seemed to come crashing down on me; I feel like I am carrying this heavy load. And yet, this should not be about me. It is about V and how he suffered. I can't explain how I am feeling but I have this thing that I need to continue on this mission of helping other parents to learn to accept, to listen, to work with their schools, to seek support. It means I have to build up my mental make up. I considered myself to be a very strong person. And I have come down in a crumbling heap with those 3 minutes. I was barely holding it together for two days, especially when people said to me - what an act of courage - I guess it was but I wasn't looking at it that way. There is a lot more work to be done.
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