I have been really bad about updating the blog very regularly. When I started writing this blog, I was hoping that it would help at least one parent/child. Based upon the calls/emails I received I hope that it has helped at least one life positively. When I finished writing all of the hardest phases, it seemed to be a catharsis. I was done shedding all the unshed tears, recalled all of the instances I would rather not and was moving forward. As I moved forward, the day-to-day existence did continue but we were all so positive that the worst was indeed past. And so it is I believe.
Convincing other parents that this route truly helped, that it requires time, patience, dedication and discipline is something that is really challenging sometimes. People will not really understand how they can dump their vegetarian beliefs for their child's health or how they could just take matters in their hands and not follow what the neurologist said even though their child may be suffering a great deal. Some truly have no idea how and why to resort to alternative therapies while others do not understand the medication aspect and how it truly impacts the brain. I think each one must find their path but in the process I do hope that the child is not at the point of no return. Someday maybe there will truly be a cure.
One of the superstitions I lived with until yesterday was not travelling back home on the 31st of December. This stemmed from the fact that V's first seizure was on the night of the 31st of December about 2 hours after we had arrived home from a long trip. So when my husband booked return tickets for our recent trip on the 31st, I was still wary. I insisted that the flight be booked for the morning. We reached fine, everything went fine and for the first time ever, V stayed up until midnight to usher in the New Year - and seems to have done fine so far. Yes, he did have a meltdown soon after waking up - his body still does not take to the changes well and continues to need his sleep routine but after the meltdown for a few minutes, went about his day just fine. To me that is a big step for him and me in this journey of life.
As V turns 11 on the 3rd, there is so much to be grateful for. His initiative in taking his diet in his hands, figuring out what might and might not work, coming up with various alternatives, recipes, understanding what and why he should and should not do things, my daughter's growing up and handling of the situation, my understanding and empathy for the children who suffer this way and what their parents may be going through... So much learning and so much more to learn....
The food stays more or less the same but V has learned several new options as workarounds and travelling is so much more manageable. Less to carry, less to worry about. He continues to struggle with being at a more mature level, making more friends, Math and his number concepts but the kid works really hard. It is sometimes so hard to see him work hard over something that should come so much easier but he understands why he needs to and continues plodding along, happy almost always.
And so as he turns eleven, I think of all of the various people who have had such a positive impact on his life, who have helped him (or us) in any way big or small, from the time he was a baby, through preschool and elementary (he moves to middle school in the fall) and who continue to look out for him, knowing that V is truly blessed.
Sunday, January 1, 2012
Saturday, August 20, 2011
It gets easier
While the days fly past, one thing I have neglected to do is update this blog on a regular basis. V has been getting better in terms of several subtle ways. Academically, he seems to have just absorbed things and synthesized these over the years. In terms of his social skills, he has made progress and I would say a great deal of progress. He has been doing a private class for social skills which has helped him on several aspects, one of the hardest being "Letting go". As I started to do the follow-up sessions with him at home and checking with him what was done in class, I realised that "letting go" is so hard for adults. We tend to cling on to the bad things/things that went wrong and it is so hard to just let go. He continues to do very well with the adults, charming them with his conversations while being simultaneously annoying to his peers.
Food continues to be the same. There has been very little change in his diet. His pallette has increased and he continues to look for options in foods where there seems very little choice at the surface. The primary diet is still vegetables, fruits, meats (he doesn't seem to like anything other than chicken), dairy. Over the summer I tend to try a few new things to see if it works out or not. One thing is for sure that his body just cannot handle sugars. He has meltdowns an hour or two after consuming a food with high sugar. That continues to be a challenge because he does get tempted by cakes and other pastries. The alternative is to let him taste a little bit so that satisfies his curiosity and then he is fine moving on. The fortunate thing is that there is no allergy.
While travelling though, with the ups and downs in schedules, he had nightmares three different nights - that just told me that the schedule and what he ate in the night still made a tremendous difference. He hadn't had these nightmares in a long time so it wasn't exactly pleasant to know that he wasn't over them.
Another thing I started doing was to let him try just a little bit of egg every time it was cooked. He has been handling the really small portion very well. So after a few weeks I will try and up that is my current thought process.
Not having a regular schedule did make a difference this summer but fortunately, for the most part, it did not have much of a negative impact on his behavior or sensory system. The one thing he did miss out on which still helps him tremendously is having a bubble bath. It helps his sensory system as well as calms him down, helps him sleep better. Coming back to a half hour in the tub was a real blessing to calm his nerves.
The biggest change has been in his sleep. Not only did he start sleeping by himself in his room without an adult around, he has slept through the night without nightmares, crying, screaming, anything negative. This was big for me in terms of letting go. I don't know anymore if he is jerking or twitching a lot in the night. However, given that he gets up on his own, all rested is good for now. I will see how it goes.
The other big change has been in his independence as he has decided to take on his tasks all by himself. This has helped with several things he now does and it is what helped him take the step of sleeping in his room by himself.
I continue giving him Ovaltine in his milk for extra vitamins without giving any supplements. He tends to eat several more vegetables now, including some greens that can be very bitter.
V doesn't need OT anymore. He does continue to need speech - that is going to take a really long time, especially with his "r"s and "l"s. He did really well academically last year which keeps me alive with the hope that when you believe in your child and think positive, the impossible becomes more of a reality; this is a child who didn't know his letters in kindergarten nor could he count beyond 5. Every task was daunting to him. Eventually, the friends will also become a reality and more and more events will get pushed to the back - did those nightmares really exist?
Food continues to be the same. There has been very little change in his diet. His pallette has increased and he continues to look for options in foods where there seems very little choice at the surface. The primary diet is still vegetables, fruits, meats (he doesn't seem to like anything other than chicken), dairy. Over the summer I tend to try a few new things to see if it works out or not. One thing is for sure that his body just cannot handle sugars. He has meltdowns an hour or two after consuming a food with high sugar. That continues to be a challenge because he does get tempted by cakes and other pastries. The alternative is to let him taste a little bit so that satisfies his curiosity and then he is fine moving on. The fortunate thing is that there is no allergy.
While travelling though, with the ups and downs in schedules, he had nightmares three different nights - that just told me that the schedule and what he ate in the night still made a tremendous difference. He hadn't had these nightmares in a long time so it wasn't exactly pleasant to know that he wasn't over them.
Another thing I started doing was to let him try just a little bit of egg every time it was cooked. He has been handling the really small portion very well. So after a few weeks I will try and up that is my current thought process.
Not having a regular schedule did make a difference this summer but fortunately, for the most part, it did not have much of a negative impact on his behavior or sensory system. The one thing he did miss out on which still helps him tremendously is having a bubble bath. It helps his sensory system as well as calms him down, helps him sleep better. Coming back to a half hour in the tub was a real blessing to calm his nerves.
The biggest change has been in his sleep. Not only did he start sleeping by himself in his room without an adult around, he has slept through the night without nightmares, crying, screaming, anything negative. This was big for me in terms of letting go. I don't know anymore if he is jerking or twitching a lot in the night. However, given that he gets up on his own, all rested is good for now. I will see how it goes.
The other big change has been in his independence as he has decided to take on his tasks all by himself. This has helped with several things he now does and it is what helped him take the step of sleeping in his room by himself.
I continue giving him Ovaltine in his milk for extra vitamins without giving any supplements. He tends to eat several more vegetables now, including some greens that can be very bitter.
V doesn't need OT anymore. He does continue to need speech - that is going to take a really long time, especially with his "r"s and "l"s. He did really well academically last year which keeps me alive with the hope that when you believe in your child and think positive, the impossible becomes more of a reality; this is a child who didn't know his letters in kindergarten nor could he count beyond 5. Every task was daunting to him. Eventually, the friends will also become a reality and more and more events will get pushed to the back - did those nightmares really exist?
Sunday, November 21, 2010
Articles
This being the national month of epilepsy, there have been a few articles.
1. The Boston Globe
2. The New York Times
1. The Boston Globe
2. The New York Times
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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