My Dad used to say, “You can’t take your eye off them for even a minute.”
At first it was a sort of parental advice--sage experience gleaned from raising four kids of his own. Accordingly, I would roll my eyes as though I was the first to have ever reproduced and remind him (rather helpfully, I am sure) that a lot had changed since he had small kids and things were *sniff* different now.
When Gabriel came along and I was receiving this advice while cleaning up yet another destructive rendering, it was met with the exasperation of a person at the end of her rope. I was watching him constantly. Or as much as I could, as much as I had with Emerald. Something was different now.
The last time Dad ever said that to me, it was after he had watched Gabe without my mother for the first time. He looked so comically stunned that I could have laughed, his voice filled with an entirely new appreciation for the sentiment and the weight of its implication:
“You can’t take your eye off him for even a minute.”
I have asserted before that raising Gabriel is the sum of his cumulative ages until this point, and never has this been more on display than since stay-at-home orders have gone into effect.
His sleep schedule has always been unpredictable at best; we try and maintain a routine the night before. He gets his dose--one Mirtazapine (antidepressant), two clonidine (blood pressure medication to promote sleep), one Risperidone (an atypical antipsychotic to help with manic episodes--basically keep him calm enough so he -can- fall asleep), and one Benztropine (anticholinergic to counteract some of the more intense side effects of the fistful of pills he takes a day) around 7.30 at night. Because he does not have to get up to ride the bus at 6 in the morning lately, we can push that back to 8 or 8.30 in the hopes that he may sleep later, but that runs the risk of him burning through it on the front end and never getting to sleep because he is too worked up.
If all stars are in alignment, after about fifteen minutes he starts calming down and getting drowsy. We set him up in the trundle bed made up for such a purpose in my room because it is 1) cold, 2) dark, and 3) far away from the rest of the house so that our sounds of existence don’t disturb him. We change his diaper and set him up in bed with a weighted blanket and a heavy quilt, the room cold enough that it is slightly painful for me to be in there. We turn Disney’s “Alice in Wonderland” on for him. Michael or I will have to usually hang out in the room nearby so that he doesn’t get up and wander off but within an hour or so (before the movie is over) he will usually be asleep.
This routine in and of itself is an improvement.
At some point during the night, he is going to wake up for whatever reason. The two main issues are either he pees out all over the bed and wakes up cold and wet, or else he gets hungry.
Regardless, he stalks the house loudly vocalizing (repetitive sounds like “ah ah ah” or undulations of “ahhhAHHHHH! ahhhhAHHH!” not unlike an exceptionally loud crow) in search of a screen to watch and something to eat.
Therein lies the heart of my problem.
He is relentless in his efforts to obtain these two, as I hope to express adequately in this post. To the screen first: he has an apple device set up to be both a communication device and to allow him to complete his school work from home, but it also serves as an entertainment/free time screen for him to watch his shows from.
The school work has been an odyssey, as I am sure it has been for most parents, school personnel, and really truly anyone affected by it. When it became apparent that students would be unable to return to school, teachers had to rush to provide schoolwork to complete from home. Special education was an entirely new consideration, but ended with Gabriel receiving a paper packet hand delivered by a couple of paraprofessionals that had worked with him. This packet was quite thick, as it contained stories, worksheets, projects, and explanations for parents.
Dutifully, I would go through a portion of the packet every morning with Gabe to the best of his ability and focus. It wasn’t much, but it was an attempt to prevent some regression that we are undoubtedly going to see when he returns to school, whenever that may be.
Then we were informed that each week for the final six weeks, we would need to turn in one completed assignment for each subject for each student. This has been a logistical nightmare.
For one, most of Gabriel’s work is centered around “adaptive behaviors”, or functioning independently in the classroom. Things like expected classroom behavior--sitting still, attending to a task, transitioning from one activity to another, following rules, etc--and activities of daily living such as using the toilet, brushing his teeth, and washing his hands. Not only do those not actually fall within traditional subjects that I can submit as proof of work, I can’t exactly send a picture of Gabriel sitting on the toilet to his teacher. It would not benefit anyone.
Another issue is that all of his classwork is modified by a special education professional in his Individualized Education Plan (IEP). I could go through and work on each of those goals as written in the ARD paperwork, but a lot of those are hard to visually express in a meaningful way to submit to the teacher as well.
Gabriel is not the only child that is required to send work, either. So I am trying to figure this out for three very different students across some nine teachers, including physical education and I am not even entirely sure what they are looking for there.
All of that is fine. I can troubleshoot it. But once the screen is pulled out for Gabriel to do his work, he is going to scream and fight and try hard to get to be able to watch his shows, which results in injured adults and damaged devices we can’t replace.
Whenever I do not want him to have screens, I charge it in the garage so that it is inaccessible (as long as he doesn’t know where it is). That does not deter him, however, and he ransacks the house and steals whatever phone or tablet he can get his hands on, regardless of who it belongs to. There is a wake of destruction in his path. If he can’t find anything at all, he yanks and tugs and yells trying to get one of the adults in his life to locate one for him.
Not ideal, but it is something we have lived with long enough at this point that I actually barely notice it anymore.
The larger of the two issues is the food.
The Risperidone (atypical antipsychotic) has a known side effect of “increased appetite”. This phrase does not adequately describe it. When I say he acts like a starving, feral creature, I say so with the greatest sincerity. Since he started taking it at three years old, he has become a racoon thieves food from other people’s plates and hands, off of the stove or straight from serving dishes, no matter how much we try and dissuade him. Scooping handfuls up, he runs away stuffing it in his mouth because he knows what he is doing will get him in trouble.
Between meals, he raids the pantry, fridge, even the medicine and spice cabinets and takes whatever he can get his hands on. This isn’t a once-in-a-while thing, either--several times during this break, I have awoken to him having eaten two weeks worth of groceries for six people in just a couple of hours before we got up for the day.
First the pantry: it is a long cabinet with five deep shelves and one tall door. We started with using industrial zip-ties to cinch the door of the pantry and the fridge closed. Gabriel learned that with enough force, he could pull the door open and the zip tie would break.
So I went down to Lowe's and found this solution:
It worked for about a week or so. When he realized it would be harder to get into the pantry, he focused his attention on the fridge. We have a side by side door set up so it is hard to close--we used to be able to tie plastic Walmart bags around the handles and that was mildly successful until he just started ripping them off.
That was taken the morning AFTER I had done full two week shopping. I was crushed. Not only was it hundreds of dollars worth of food gone, but I would have to go out all over again and there was no guarantee he would stay out of it.
I went back to Lowe's and discussed my problem with a couple of employees who set me up with a 5 3/4 inch steel keyed padlock that goes around both handles. He can only open it a crack, not enough to get his hand into.
Ths stymied, he redoubled his efforts toward the pantry.
Then he found out that if he pulled on the very bottom of the door of the pantry, he could pull it open just enough to grab packaging from the bottom shelf and yank it out. So we put all the food in plastic storage bins with lids so it would be harder to access quickly, buy us time to get in there before he stole anything.
Pulling on the side of the door opposite of the lock, he yanked hard enough to pull the hinge off, giving himself access to the foods on the bottom shelf.
Tula started out by tattling on him when she saw he was taking food, so he figured out he could give her a portion of whatever he stole to buy her silence. It was quite effective, and her blood sugar would skyrocket. Emerald and Benjamin would try to stop him when they heard sounds of thievery, but they are just as frustrated as we are. The one silver lining is that he heard a word often enough that he started saying it verbally recently: whenever he was caught, he would skitter away yelling "OUT! OUT! OUT!" Like, I'm getting out, you don't have to tell me.
If the fridge and pantry were too much, he would get into the spice cabinets. He ate a bottle of dried chili powder and another of Parmesan cheese; the cholula and flav-a-col were not to his liking, so he dumped them out all over the furniture and carpet in the playroom. Packets of taco seasoning and gravy mix were better, and he tears them open with his teeth and pours what he can into his mouth.
Or he will get into the medicine cabinet and eat a fistful of gummy Melatonin vitamins, a bottle of tums chewables, take a swig out of the DayQuil. Also did not taste like he was hoping, the DayQuil was also emptied on the floor. That room is getting redecorated a rather unpleasant shade of orange.
Last night, he found his way into my bathroom and sampled my sugar body scrub.
I am at the end of my creativity, feeling discouraged and impotent. What else can I do? This has become a full-time job, even with three adults in the house (Gabriel's personal care assistant Miss Stacia is still coming to work with him in the morning) and two very beleaguered siblings watching him. In the interest of keeping this post a manageable length I have not touched on the aggression or fecal smearing, both of which are certainly problematic but are not the primary concern at the moment.
It is behavioral. We have tried leaving cheap and acceptable foods out for him like vegetables; for our efforts, we have torn up food strewn about the house.
And if we are successful and completely lock down everything that could possibly want to eat?
He leaves the house and goes into neighbors' homes looking for food.
That is our front door.
For the most part, we are doing alright. All of us are healthy, we are adjusting to quarantine just fine. It is actually kind of nice getting to spend time with the kids, and the weather has been so beautiful. We go for walks and look at flowers, play in the backyard. I got a little lavender tree on clearance and the kids have enjoyed taking care of it while petting its soft velvety leaves.
This issue with Gabe is just taking up so much processing power that I have little time for anything else. Michael and I are exhausted.
So here is me reaching out, asking for an outsider's perspective--seeing if anyone has any ideas we have not tried, or any advice. We would greatly appreciate it.
Thank you for reading, and for your patience between posts.
--Andie
