I am embarking upon one of my most loathsome tasks of the year... that's right, summer camp planning. Ugh. Those of you who have done this know what I mean when I complain about its aggravating nature. For those of us working parents, we rely on camps to keep our kids occupied during the summer while we work. Planning for 10 weeks of summer one week at a time is tiresome. When you have two kids with different interests, it's doubly harder. When you have two kids when one is aging out of camps (Sasha is aging out of many camps since he will be starting high school next year), the number of available camps shrinks and it's harder still. When your teenage kid has special needs, it starts to get downright stressful.
Sigh.
Well, it has to be done nonetheless. In the past, I have wavered between wanting to tell the camps *everything* they need to know about Sasha (including his many medical issues, emergency medical care protocol, behavioral problems i.e.: food seeking, visual impairment, etc.) so that they are prepared to handle him versus wanting to give them minimal information so that they don't turn him away because he has too many problems. I have erred on the side of being very transparent with these camps and have been very pleasantly surprised by the welcoming nature of most camps we've tried. Some camps have been so accommodating, I have felt touched by the kindness shown to us. Now that he is aging out of most camps, one option is for him to be a Counselor-In-Training (CIT) for the younger kids at camp. Funny, just last year he required extra supervision for his food seeking, water drinking (Sasha has Diabetes Insipidus with absent thirst), heat intolerance/temperature dysregulation, fatigue, visual impairment, etc. This year, he still has most of these problems but we are actually considering having him be a CIT in certain camps. After some thought and planning, I believe he may do well as a CIT camper at some of the familiar camps (with the super supportive camp directors/staff). Sasha is excited about this opportunity- he has always had a special affinity to helping younger kids or kids with special needs (autistic kids).
This summer, we will also send Sasha to a sleep-away camp for kids with vision impairment. Two years ago he tried it for the first time and had a relatively successful time- his first week EVER being away from his parents for an entire week! He tried the camp last summer but had some behavioral problems (we think this was the week he started sneakily acquiring tons of chocolate) and was asked to leave camp by the nurse. We are going to have him try attending the camp again and hope that the improvements he has made with oxytocin/naltrexone will help him have a successful week with minimal problems. Of course, we still have our doubts and anxieties about these upcoming challenges but we will "fake it until we make it" as they say.
In our attempts to entrust Sasha with increasing freedom as he matures, we also feel it is now appropriate to apply some consequences for his undesirable behaviors. Before Sasha started to benefit from oxytocin/naltrexone treatment, he was engaging in frequent and regular food/non-food sneaking and stealing but we did not have the heart to punish him for his behaviors because we did not think he could fully control them. Furthermore, he was only interested in food so it was hard to find useful leverage to use as consequences. In effect, there was nothing we could take away from him (no privileges, fun activities, toys) as a punishment for his misbehavior because none of them would have mattered to him. The only thing we could have taken away was food and we didn't think it was a good idea because his brain tumor was already giving him a big enough complex about food and we didn't think he needed any more baggage from us. Also, it was heartbreaking to see his shame and self-loathing whenever he was caught sneaking/stealing food. We felt that it was punishment enough for him to experience these terrible feelings and only hoped that they would deter him from continuing to engage in these behaviors... sadly, they didn't. Fortunately, oxytocin/naltrexone has helped.
Now that Sasha has had a few months to demonstrate a more normal appetite, more normal relationship with food, and an ability to feel sated after eating a moderate amount of food, we feel that he is ready to take more responsibility for his own choices. I wrote in a recent post about free will and I believe that Sasha now has the ability to exercise his own free will to decide whether or not to steal food/non-food. Until recently, we were merely incentivizing him to "make good choices" (not engage in food/non-food seeking) by letting him "earn" money (kept by us) for every week he is not caught stealing. Now we will add the additional incentive by docking his earned money for every incident he is caught stealing or attempting to steal food/non-food. Since Sasha has made a friend and has a hobby (Magic the Gathering cards), we have leverage (yes!) and he has two good reasons to stay on the path of good choices! He understands that if he ever stole something from his friend, he would risk losing this friend and risk ruining his reputation among the group of kids with whom he plays cards. He also really values his cards and would be very sad to have his reward money confiscated for his misbehavior.
I had a talk with him about this a week ago and he was upset when I presented it to him. However, after I explained that the new consequences are 1) an indication of his progress due to our belief that he can now make good choices (whereas before, he was controlled by HO Monster) and 2) yet another motivation for him to make good choices to earn his growing independence- he calmed down and was able to agree with me that it was a good idea. We have yet to catch him being sneaky or dishonest since starting the plan so we haven't yet had to take away his earnings but he knows we are still watching and that we will do it if necessary. Let's hope that the additional incentive will keep him honest!
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