Another very social weekend for Sasha! He went to his friend's (there, I said it!) house on Saturday to hang out and play games. They had a great time together and his friend's mother indicated that Sasha was a "delight" to have over. The get together went so well that the boys made additional plans for the following day!
Yesterday evening he was taken out for a belated birthday dinner by a friend of mine who has known Sasha since he was an infant. She (Kathy) has been coming over on a regular basis for 13 years to babysit Sasha (and his sister) so that my husband and I could do date night. Needless to say, she is a close friend who knows Sasha well, both before and after his brain tumor. She hadn't seen him in a few months and noticed a very big difference between him, now and then (pre-oxytocin/naltrexone). According to Kathy, Sasha now exhibits a calmer, happier and more relaxed attitude. She noticed how he no longer exudes the anxious disposition he used to have when he was hyper-focused on food. During their dinner (at a Thai restaurant), Sasha ordered his favorite dish with some brown rice and left enough unfinished to bring home leftovers. After a couple of hours of hanging out at home playing cards, they went out for frozen yogurt and he had his (usual post-oxytocin) HEFY (Half-Eaten Frozen Yogurt). She also commented that he now has "things to talk about" other than on the subject of food. In talking with Kathy, it made me also think about how much calmer and relaxed I have felt being around him and how my irritable Kitchen Bitch persona has pretty much vanished.
Besides receiving this feedback from Kathy, I also received feedback yesterday from his educational therapist (with whom he has been seeing on a weekly basis for three years). She, too, commented on how he has been more energetic, happy, and focused in his school work over the last couple of months. And just a few minutes ago, I received a random text from a neighbor who saw him walking in the neighborhood today and commented to me that he looked "GREAT"- it was very gratifying to hear such positive feedback about Sasha from other adults in his life who have known Sasha for years!
As I mentioned, Sasha and his friend made additional plans yesterday to get together and today I brought them to a store (with dog in tow) where they attended a "pre-release" MTG card event... pure gaming geek heaven! I stayed around on the outskirts of the vicinity for the duration of the game (two hours) to give him extra supervision/support since the store sells junk food, just in case. Fortunately, I could see that he was plenty occupied by the game since he was playing with another individual and was in a separate room not at all connected to store with the candy access. Sasha had a great time at the event and reported "no temptations" to want to sneak any food or cards that did not belong to him... what success (and what relief)!
Finally, our good neighbor friends invited us over to their home for dinner tonight (my birthday was yesterday) and we were treated to a delicious homemade cassoulet dinner. We purposely did not restrict or nag Sasha at our friend's home in order to see what he would do. He hung out with the kids before dinner and did not eat any appetizers before dinner. He ate a hearty amount at dinner (like everyone else) which was fine. What was NOT fine was that he was tempted by the bag of Lindt truffles that were sitting atop their refrigerator and I caught him with his hand in the bag (literally) trying to sneak some chocolates after dinner.
Ugh.
It is times like this when it is difficult not to feel discouraged. After all, I started the experiment with the main goal of helping him normalize his relationship to food and to make it possible for us (his parents) to stop having to police him. When we catch him engaging in sneaky behavior, it is hard not to have the black and white attitude that he is NEVER to be trusted. Catching him stealing money from his father's wallet or trying to sneak chocolate at a friend's house is certainly grounds for believing that he is at risk for more dishonest behavior, right? Does it mean that we should never let him enter a store with candy? Does it mean that we should go back to policing him heavily again or restricting his access to social gatherings? I hate to expose him to situations he cannot handle and have him blow it. I also hate to return us to the old days of extreme vigilance or avoidance.
What to do? If only there were a parent handbook to help us figure this out. To be fair, he has definitely made progress in improving his relationship to food, his metabolic health, and his new friendships over the last 6 months. I can say this with confidence. However, he isn't cured. In my earnestness to find a solution to his HO, of course I was hoping for a miracle cure but there is no miracle cure for HO just like there is no miracle cure for being a flawed human being...sigh. All I can say is that we will do what we can to continue to support and correct him as needed- to restrict him from high risk situations, monitor him in moderate risk situations, and expose him to lower risk situations and hope and pray that he will be able to learn how to use his best judgment in each situation in order to earn more freedom from us and gain confidence in himself. After tonight's attempted chocolate sneaking, I asked him about the incident and reminded him that he could have simply asked our host for a piece or two of chocolate (which we would have allowed). I can only hope that he considers this as an option the next time he meets this temptation.
I can remember when I was a sassy teenager and when I acted not in accordance with my own parents. My mother would plead with me and ask me why I was so oppositional. It aggravated me to think that she assumed that I was reacting against her and I remember telling her that I did not necessarily always react for or against her. I told her that there was a thing called "free will" and that I used my own free will to choose my own actions. As a mother to Sasha, I can certainly appreciate the many factors that cause him to behave in the way he does... a brain tumor affecting his endocrine function... his hormone replacement medicines... a traumatic brain injury affecting his impulse control... a home environment restricting his access to food... a hunger for and a genetic predisposition to being a "chocoholic"... etc., and yes, even his own free will to make his own choices. Perhaps the most humbling thing about being a parent is the realization that no matter what we do, we are still not able to steer the course of our children's lives whether it is due to the circumstances of their environment, physiology, unknown and intangible forces, or because of their own free will.
I could decide to dig into doing more intensive research into finding the "right dose" or the right cocktail of medicines for Sasha. I could throw up my hands and call the experiment a failure because he still exhibits sneaky behaviors. Tonight I will do neither. Instead, I will consider the big picture and sit still with acceptance... that ALL of it (the good, the bad, and the ugly) is part of this mysterious journey we call Life.
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