Friday, January 3, 2014


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....

5 comments:

Manjiri said...

Happy Birthday! It already is :-). So moved reading this... God bless. Always.

Sarbani said...

I salute your caring, patient and positive attitude, Smokon and no discounting on the kid's attitude too... God bless V and the entire family ...I am soo proud of the lovely Mom !!!

Sarbani said...

I salute your caring, patient and positive outlook, Smokon and V deserves a big hug for being such a sweet and patient kid , admirable attitude really !!! May God bless the kiddo and the entire family ...I am soooo proud of the lovely Mom ! I am sure your writings will go a long way in adding hope and good cheer to many more families who might be feeling deep despair right now ...

Holly said...

Wonderful to hear Smita! You are an amazing mom and he is a lucky kid=)

Sanjay Singh said...

What an amazing Mom you are Smokon, more power to you! Just read the beginning days and the detail was so touching. So proud of you for being there with V and taking him through...he will be so proud of his mom! God bless the whole family & give you more strength!
All the Best Smokon, live on....V also stands for Victory!
...will be following this magnificent life story of extreme strength, emotional care & enduring hope!
Hugs to you!