Ugh, today we had a tough afternoon. The good news is that we had a full two week respite from disasters and we could appreciate the difference and benefit from the oxytocin. The bad news is that we were visited today by some of the hell we used to experience on a regular basis before oxytocin's beneficial effects... and boy, was it a painful reminder of what we've been living for these past five years!
First of all, to make things worse, my husband is out of town on business and so it was just me, alone, trying to keep things in order. Disaster struck late this afternoon while I was at work. Due to my late work hours and my husband's absence, I had arranged for Sasha and his sister both to walk home in the afternoon to wait for my friend to come over to supervise them and take them to dinner. Their middle school is a 8 minute walk home in a safe residential neighborhood. I gave their after-school director permission to excuse them at a certain time and gave the kids explicit directions to walk directly home. I told Sasha that he was to "weigh and water" himself (the way we keep his electrolytes in more-or-less balance between weekly lab draws for his diabetes insipidus) and to text me his weight so I could be sure he was sufficiently hydrated. The kids were told to hang out at home until my friend arrived (1.5 hours after their arrival home). I would normally not allow Sasha to walk home alone because of his history of buying/stealing food but I thought it would be ok to let him walk home with his sister.
Well, things didn't go as planned and on their walk home, Sasha was hot and complained of ankle pain. It was an unusually warm day and he does have problems walking due to his ankles but this time, he became stubborn and when they reached our street, he refused to move and sat down. His sister tried to convince him to keep walking since they were only (literally) 11 houses away on our block. Sasha became defiant, sullen, shut down and refused to communicate and refused to walk any further. She tried to get him to keep walking but he refused and she got increasingly upset with his stubborn, locked down state. After about 10 minutes of cajoling, she knew that I was expecting a phone call at a certain time and didn't know what else to do so she ran home to make a phone call to me (no, she doesn't have a mobile phone yet but she's going to get one now!). She ended up interrupting a class I was teaching to tell me that she left Sasha on the corner down the street (and as it happens, it was across the street from the high school where there are vending machines). Needless to say, I was very upset to hear this and the timing could not have been worse. I spent several minutes trying to reach him on his phone and finally got a hold him after about 6 attempts. By this time, he was at home and could see how upset he had made his sister for worrying her and how much he had upset me and disrupted my work day with his actions. Although I was irate with him, I was relieved that he was home and that I could resume teaching my class. To add to the excitement, I received another interrupting phone call 15 minutes later from him because he had set off the house alarm (the one we installed to keep him from eloping in the middle of the night to buy/steal chocolate) and he needed the code to turn the alarm off. Oy vey! After more attempts to get a hold of his sister (I didn't want to have to tell him the alarm code for obvious reasons), I found out that they had gotten a hold of their dad on the other side of the country and that their dad told him the code in order to turn off the alarm. Well, at least the alarm was turned off but now I had deal with worrying about the lack of door security.
Going back to the original problem on the way home from school, did he act in this stubborn and sullen way in order to find a way to dodge his sister so he could go to the vending machine for candy? Maybe... there was definitely something troubling about the way he behaved.
After I finished teaching the class, I called home and my friend had arrived. According to her, both kids were upset. Sasha's sister was very distressed and worried about him. She felt responsible for taking care of him and felt so badly that things didn't go as planned. In the last five years, she has witnessed many of his meltdowns in our home including one time when we called the police after he had run away declaring that he wanted to kill himself (yet another time when I was alone with Sasha without his dad). Sasha was feeling guilty and angry at himself for upsetting his sister and was definitely in the midst of another meltdown. He reacted by repeatedly slamming his door so hard, my friend was frightened and thought he would break the door. After hearing this, I left work immediately to return home.
Once I got home, I could see that he was moody- for a few minutes he was reasonable and then he became histrionic and made declarations of wanting to be dead. It was hard to understand the origins of his extreme behavior. It didn't make sense to me but I recognized it as the way he used to behave on a much more regular basis in the pre-oxytocin days. In looking back in the last two days, there have been some subtle signs of things going awry... Yesterday he was caught sneaking some Cheetos in a classroom where he was not being adequately supervised. I heard a report from his resource case manager at school that his aides were reporting he was taking very frequent snack breaks to eat nuts in the classroom (despite his knowing that there is no nut policy at his school). He has been finishing all of his food at his meals which is a contrast to how he had been in the two weeks preceding the last two days.
What has changed? Well, it may be as simple as a mechanical problem with the oxytocin administration. We received a new bottle of oxytocin just a few days ago from a new compounding pharmacy. It was in a tiny bottle and the nozzle was so short, it was not possible to insert it fully into Sasha's nostril and we noticed that the medicine was dripping out of his nose! For the past few days, Sasha has sprayed the oxytocin and sometimes he felt a good spray and sometimes he didn't and sometimes he felt it dripping out... we have had him respray the medicine into his nostril when he didn't feel the spray or when he felt it dripping out of his nose... now we don't know if he was getting the right dose- too little or too much? ARGH! I have since tried to transfer the new medicine into his old bottle and to clean the nozzle of possible clogs and I have even emailed his doctor to get another order from yet another pharmacy in the hopes that we will find one that makes the oxytocin in a more user-friendly bottle (we could go back to the first pharmacy but it was more costly). I think I have cleared the bottle of any possible clogs and we will do our best to get the sprayer to cooperate with us tomorrow.
Is his fragile life (and our sanity) dependent upon the effectiveness of this medicine?
Yes.
How about a friggin' spray bottle?
Sadly, yes.
Is parenting the most humbling job in the world?
Hell, yes.
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