Odds and Ends and Indian society

One of my college friends decided to post the links to my blogs. So the blog saw a lot of traffic these past 24 hours. I have been blown away by some of the responses and reactions. There are so many good and sensitive people out there, so many who have their own share of problems. Over the years various people have reached out in ways that have been really touching. Even folks spending time reading about V's journey is impressive. After all, why should anyone spend their own time and energy on something that is not their own? 

Through all this, one of the things I have always maintained is to believe in one's child. Of course, there are situations which are different. The believing might be within certain other boundaries. For instance, a friend of mine has two boys who are autistic. She has handled their situation with a lot of grace over the years, been really strong and practical from what I can see. The fact that she has been working on alternatives for her boys, knowing that they probably are not going to go through a four year college, and handling it all so well has been an immense source of inspiration. 

Even though Indian culture dates back to thousands of years, there is so much that we Indians tend to club under the cultural bucket as not allowable is simply callous. The fact that a child has to struggle under the existing school system in India without support, assistance and services that may be needed in certain cases, and the fact that parents have to accept and support the child and work with family members to have them also accept the situation, as well as continue to shield their child from psychological harm because he/she is not an "A" student is a great deal of burden to carry. It is one that needn't be that way. Together, we all need to start changing that society, no matter which geographical location we may be situated in.

Today is V's thirteenth birthday. The last few months have been fantastic. Not only has V started eating all foods - no restrictions, he has been able to hold it together. In the past, we have tried adding in different foods during big school breaks. However, they haven't worked out - no seizures - but either he would have meltdowns, or there would be some negative impact on his behavior. This time though, it was different. We started experimenting in the summer as always. He started having bits of eggs, toast, and a few other foods that were a complete taboo earlier on. Waited to check and there was no negative reaction. So, I started letting him have more - portions of rice for each meal, slowly increasing it to adding a slice of bread or roti (Indian bread - whole wheat), eggs, waiting and watching after each step, then slowly increasing it. By the time school started for V, he was eating the same food as all of us. It came on unsuspecting, at a time I was probably not expecting it - but then I hadn't expected it. The idea was to take a day at a time and we had finally reached a stage when it was all working out!

My superstition got the better of me and I did not say anything until Thanksgiving when I put it up on Facebook that I was grateful that he was off his restricted diet, in addition to being seizure free (and nightmare free and almost meltdown free)!

He has been really enjoying the freedom to try anything and everything, to feast on things he couldn't, to not have to ask me or check labels each time he wanted to eat something. I have mentioned before that we are very lucky that he is by nature, a very happy child, and so this made him happier. I kind of felt lost initially - I just had to make the same lunches and dinners for both kids. It has made a difference somewhat but is always a reminder of how I need to count my blessings.

Keeping up the optimism has paid off. He had a great birthday and celebrated it by not just eating the toppings off the pizza or a bite of icing, but the entire pizza slices with crust and a whole piece of cake!

In terms of academics, Math continues to be a struggle but given the circumstances, I think he is coping reasonably well. The biggest challenge continues to be his executive functioning. He has been getting a tremendous amount of help and that is great. Middle school has been super from a social perspective. He has found friends who are truly friends, those he can think on the same wavelength, those who will put up with his idiosyncracies, those who may be at a similar maturity level and those whom he can share a reciprocal relationship.

My message continues to be (I use the same for all my students as well) - keep positive, no matter what and keep believing....

Another birthday coming up and over a hurdle

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.

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?

Articles

This being the national month of epilepsy, there have been a few articles.

1. The Boston Globe


2. The New York Times

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.

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.