Thursday, April 26, 2018

A constant issue for us with Anthony is the need to monitor him virtually all the time.  If there is food he wants to eat (that he knows he shouldn't), he will eat it. If there is something he can rip, he will rip it. If there is something that can be broken or snapped, he will break or snap it. Unfortunately, that last obsession has recently come to include razor cartridges.

For Anthony, I have gotten a handle-and-cartridge kit from Walmart. He snapped so many purely disposable razors that I had to go upmarket a bit with him. Now when he snaps the cartridge off, it doesn't actually break, and I can snap it back on. But the problem is worse for my razors.

I have settled on Harry's® razors as the best balance of price and effectiveness for myself. But Anthony has gotten increasingly aggressive recently about going after razors, including mine, and when he snaps off the cartridge, the design is such that he actually breaks it and renders it unusable. I have thought about contacting Harry's to try to persuade them to change the design, but I can't imagine the demographic of parents with autistic kids breaking their products being worth the likely-sizable investment necessary to re-tool the razor cartridge molds.

Gratefully, Harry's are now sold in some physical stores in addition to the mail subscription I have, so I can go buy more before the next scheduled shipment. But, beyond the aggravation and extra cost is of course the extreme worry that Anthony is going to badly cut himself--I'm amazed it hasn't yet happened.

I believe I have mentioned that we don't usually stay with him while he's in the bathroom; if he needs to have a bowel movement it's rather unlikely to happen without leaving him alone. But we do leave the door open so we can hear what he's doing. Generally the worst is that he will get into the trash to pull out a toilet paper core to rip. However, it has also usually been at those times that he gets up and grabs razors from the shower shelf.

Recently, though, he surprised my wife by suddenly heading to the bathroom and grabbing the razors before she could get to him. He's uncharacteristically fast when he wants to be.

So, my wife has hidden my razor behind her shampoos and conditioners. I fear it's a temporary solution and that he will figure out in short order its location.

That is, unless he's already aware and is again biding his time to bolt into action when he thinks he can't be stopped.

Monday, January 29, 2018

Anthony recently "aged out" of the public school system (he had to leave at the end of the calendar year rather than stay until the school year was over), so we have had to find a service provider for him during the day when both my wife and I are working. That's something of a tall order for us, as we've had a number of places refuse him because of his ability to hurt people when he's upset. And already with this new provider--less than a month with them--it took three people to restrain Anthony after he head-butted a fourth member of the staff there. When I heard about it, I suspected that he needed to have a bowel movement, and that turned out to be the case at home.

He has certainly had a number of these incidents at his previous school; most of what Anthony does goes unwritten here because this blog isn't meant as a comprehensive "web log" as much as it is about highlighting new issues without being redundant. But the school staff knew him well and had a general idea of what to expect. We have found that, even though we are specific from the start about the danger with Anthony, it seems each organization has to see it first hand to truly appreciate what we have told them.

In that sense, this is a re-hashing of something I wrote a few years ago after he sent a staffer to the hospital and we were then told they could no longer take him, though they had initially assured us they could handle him even with our cautioning. The difference now is that we are quickly running out of options.

Another recent issue is a morphing of an intermittent problem. We have more than enough of most kinds of clothes for him thanks to the past generosity of people at church, but lately he has started ripping his coats. I am sure that some of this is due to the change in his routine, not being at school, and being with two different service providers (one until 2:00pm and another after that into late afternoon) each day; I believe he has lost the sense of obligation to forbear doing something that provides stimulus to him. Whatever the reason, it's more serious for us than ripping shirts or pants (which he still does); it isn't as common for people to have spare coats hanging around at home as it is for other clothes that have fallen into disuse.

He had a new coat to replace a medium-weight jacket that had lost the use of its zipper. He ripped that in fairly short order, so I went to the thrift store and got him another. That lasted one day. He went back to wearing the one without the working zipper, but then ripped that as well recently. Not wanting to take a chance with his heavy winter coat, I went again to the thrift store and thought myself quite lucky to find a surprisingly decent leather jacket for $10.

As he has been destroying his coats while in the car with his second service provider in the afternoon, I informed her of this new jacket (that I hoped would be much more difficult to rip) and asked her to take it off him and put it somewhere he couldn't easily reach it. But it turned out that he tore apart this new one, sturdy leather and all, at his first service provider, the same day he head-butted one of the staff there.

Ultimately, I know that both problems would be solved if we could keep him home. It seems like a simple thing, but I'm pretty certain that Anthony prefers to be with us. Likely because we understand him better, his behavior is better with us whether it is at home or taking him outside to run errands. And I do like taking him with me to go places as long as he isn't in a questionable mood. Because he doesn't speak and it's difficult to tell exactly how he feels, my relationship with him isn't the same as what I have with my other two kids, but there's still something of a quiet joy to it that I would be happy to have more often.

On another note, I have felt for several years that I needed to write a book about Anthony once he was out of childhood, and that time is now here. This has been the plan while acknowledging the unlikelihood of such a book finding an audience of any particular size. If, however, the planets somehow align and it ends up on a book club reading list or two, that just might be enough to give me the freedom to venture into another line of work that allows me to keep Anthony home. Here, then, is to inexplicable celestial phenomena!

Thursday, September 14, 2017

My kingdom for a screw-on cap.

Anthony's obsession with ripping things has extended to flip-top caps of toiletries for quite some time now. That of itself would be tolerable except that the edges left over are sharp enough to inflict a good scratch if considerable care isn't taken in the handling of them. Clipping off the edges only makes a different sharp edge, and I'm not going to the trouble of trying to file them down *each and every time* he does this. Burning the edges is another option, but the results are inexact and, hey, I'm literally playing with fire.

For shampoos, conditioners, and body soaps, we have resorted to re-filling pump bottles of more expensive (read: my wife's) products with the suitably inexpensive ones Anthony and I use. It should be noted that he doesn't discriminate; even some of my wife's products have flip-top caps, and he's quite happy to go after those as well.

Some products such as face washes don't work well with pumps, however, and for those it's a matter of finding ones that are both worth using and also come with a screw-on cap. I have happily used one that meets those conditions from a dollar store a number of times, but it is difficult to find except at a particular location, and now it appears it might have fallen victim to discontinuation altogether. I'm actually rather stressed about this; the following example illustrates the problem.

I am taking a few days off currently. Last night, Anthony was edgy but we determined it was a bathroom issue. He didn't go after sitting on the toilet for a while, but seemed all right, so we had him go to bed as usual. When I went to get him out of bed this morning to get ready for school, though, I found that he had vomited on his bedding, including his pillow, and had slept in that so that the side of his head was covered in vomit. (As an aside, although this is the first such instance in his lifetime, obviously we don't want him to go through that even once. My wife and I are trying to think of what will work for him and for us to ensure we can minimize any future time spent in similar situations). I cleaned him up and put him in a warm bath, hoping that would help him to feel better if he was still feeling sick.

I went about some other tasks and came back about 15 minutes later to completely wash and dry him, then had him sit on the toilet because he had given me reason to feel that might still be an area of concern. I took all of his bedding outside to wash off the dried vomit, then put what I could of it in the clothes washer. But when I returned to check on Anthony, he was holding the ripped cap of a new face wash, which I had ensured he would not see me hide behind my wife's shampoo and conditioner in the shower. That meant that, despite my efforts to attend to his needs and give him comfort, I either misunderstood how he felt, or his obsession was so strong that it took priority over how he was feeling.

In the end, I will probably have to bite the bullet and pay more for better bottles or containers. Maybe I will start a Go Fund Me account....

Sunday, April 9, 2017

"Yeah, but what about Anthony?"

My wife has been working for an airline for several months now.  In so doing, members of our family can fly on her company's flights for free domestically (when they aren't full with paying customers), and at discounted rates on other carriers internationally.  My wife has already utilized this perk to travel overseas for a long-overdue visit with her family, and with our daughter to see a play in New York.  Shortly, she will travel to Boston with our younger son to bring some American history to life, and in the summer he and I will fly to Los Angeles to see Manchester City--his favorite soccer club--play Real Madrid.

But there is a common denominator in all of that: we aren't traveling as a family.  My wife has also talked about going back again to see her family and a lifelong friend, traveling to Sweden to see a friend there, and flying to France to fulfill a dream to go for a milestone birthday or anniversary.  The rest of us would also love to go to these places, and I would particularly like to go with just my wife to France since she spent a few months there before we were married and has spoken ever since about going back with me. But the discussion always comes back to, "Yeah, but what about Anthony?"

The longer a flight, the less likely it is that he will make it through without incident.  Even a trip to the West Coast for us is the same amount of time as sitting through a movie, and we don't try that.  Of course, that's a different environment; he can certainly make *some* noise on an airplane without incident.  But at issue is the inability to take him somewhere else if he gets upset.

That doesn't happen as often as it once did, but we need only look at yesterday's soccer game for our younger son as an example of the risk; we left Anthony at home with his sister rather than having him out in anticipated rain, but she contacted us almost immediately to say he was upset.  We asked her to close the laptops on the table so Anthony wouldn't target them, but she felt that if she even got up to try to do that, he would attack her.   She did eventually get him to go to his room without injury to herself, but his behavior was suspect until we were able to return a couple of hours later.

This general theme of accounting for Anthony has us thinking about how we will take care of him as we get older as well.  We want him to be able to stay with us, but we recognize that the difficulty of handling him on a day-to-day basis will increase over time; already, we are looking at how we will be affected when he ages out of the school system at the beginning of next year.  To that end, we are looking at something along the lines of a house with a mother-in-law apartment; to be more specific for our case, ideally we would have his room be part of our house but with the ability to lock it off from the rest of it, while opening up to his own extended living area where he could be attended to by a service provider when we are either temporarily or no longer able to handle him, including for times when it might be important for the rest of us to travel together.

But in order to do that, we would first have to sell our current house, and, in no small part due to the damage he has caused to it, we have considerable work to do before that even becomes feasible.

Friday, October 21, 2016

Family Picture

We recently went out to eat (at Benihana, obviously from the picture) for my wife's and Anthony's birthdays in October; my wife has enrolled to get birthday discounts, and it's still expensive with them! But Anthony really likes the food, and seemed especially happy with the complimentary ice cream after the meal.  The last time I posted a picture was about four years ago; our younger son is now taller than his sister, much to her chagrin.  

Sunday, October 16, 2016

I may have found a way to get Anthony to exercise.

I have tried running with him. That of course entails my jogging a couple hundred feet to entice him to follow along in his special-needs running style--and, as I write that, I acknowledge that it doesn't have a positive connotation, but the intent is that he doesn't know *how* to run because he didn't grow up running around or playing sports like children normally do--but he tires of it quickly, both physically and attitudinally, and I obviously don't want him to explode on me. 

We have tried getting him to ride an exercise bike, because we've heard he does it here and there at school. But he loses interest fairly quickly, especially if we aren't standing right near him telling him to keep going.

I have a rebounder (mini trampoline) that I use for my own exercise now and again, and have tried getting Anthony to jump on that.  He is OK with that for a little bit, but won't do it long enough to make much of a difference, and I am always concerned that his weight is too much for it anyway.  I'd love to have a real trampoline for him, because I have seen him jump on one for an extended period on his own, even to the point of starting again after stopping because he was tired. But I don't see us forking over the cash for one of those at this point because of the need to monitor him and the lack of space to put it inside our house for year-round use.

I tried taking him outside with me recently to help me pick up small rocks (of which we have an unexplained overabundance) in a front area where I have gardened. That didn't go over so well--I had to goad him to keep picking them up; I even thought to myself that he exhibited some signs of being a normal teenager! So, I sent him back into the house while I continued on my own.

But yesterday the routine was a little different; I gave him a haircut in the middle of the day and gave him a shower. Because of that, I didn't shower with him in the evening but instead had him change into his pajamas and go straight to bed. When I went to get him out of bed this morning, I recognized immediately that I had committed the cardinal sin of leaving a diaper on him, because the ripped contents of it were all over the floor. But, later, I thought I could try to get Anthony to pick them up and put them into the trash bag I was holding... and he did, without complaint! That involved quite a bit of repeated bending down, and he did a lot of it without me having to urge him on. Could it be because he understood it was his fault? I don't know, but I'm going to have him wear a diaper to bed every night so we can do this each day!

Well, no, of course, I won't.  Beside the fact that it creates residue other than what can be readily picked up, the diaper clearly keeps him awake for a while at night until he rips it off, and that isn't in anybody's interest. So it's back to the drawing board. I did have him later following my lead in bending down to touch my toes, so maybe there's some hope there, but I still foresee an organizational and motivational challenge to ever get him enough exercise to lose significant weight.

Wednesday, July 13, 2016

An Open Letter to Universal Studios

To whom it may concern,

Our family recently visited Universal Studios Hollywood.  We have a 20-year-old autistic son who doesn't do well if required to wait a long time in a line, so we availed ourselves of the opportunity to receive the disability pass so graciously offered to those needing it.  The gentleman who assisted us at the Guest Relations desk was extremely cordial and helpful, a true credit to Universal.  It seems to us that you have gone to great lengths to try to accommodate those with special needs, for which we and surely many others are grateful.

With all such efforts, however, we hope that you will appreciate feedback when the results end up being out of line with your intent, and unfortunately our experience in this regard could have been substantially better.

The improvements we would like to see are specifically in relation to The Wizarding World of Harry Potter, but, given that training for staff is probably standardized throughout the park, it may well apply to other venues as well.

With the disability pass, we were assigned a time later in the day to get on the Harry Potter and the Forbidden Journey ride.  When we arrived, the young man to whom we showed the pass informed us that we would need to stow our purses and backpacks into lockers provided, and ushered us into line. We were happy to find that the lockers were free, but it took us some time to navigate the crowds and the instructions provided to appropriately stow our belongings.  We then went out of the locker area to find a couple of staffers directing people to general boarding.  We didn't see people going any other direction, and no mention was made of an alternative, so we followed the throng.  After some time, we determined that if there were an entrance for those with disabilities, we were not going toward it, so we made our way back to the aforementioned staffers and found that, yes, there was another direction to go, and it was behind them.  So, we made our way down to that line, where we were asked for "the password" by a Hogwarts-themed staffer.  Not knowing what "the password" was, we made a feeble attempt to play along by saying Harry Potter-themed words.  Then she informed us that "the password" was our disability pass.

Believing that we no longer needed it after showing it at the appropriate point earlier, we had stored our disability pass with the rest of our belongings in the locker.  No mention had been made by the first staffer to keep the pass with us while stowing our things; neither was it noted by the staffers directing riders when we asked about going to a disability entrance.  So we got out of line a second time, made our way back to the locker area, fought the crowds once more, retrieved the pass, and finally made it down to the ride.

But there was a bit more for us regarding Harry Potter and the Forbidden Journey.  It was a terrific ride, and our other two teenage children enjoyed it immensely--they went on it again themselves later.  But, while we didn't have any incidents, our autistic son riding next to me could have very easily had a negative reaction from not understanding the concept of the ride, along with its pronounced gyrations as the characters fly virtually all over Hogwarts.  And given that the ride is not short, any reaction to it could have quickly turned extreme.  While such theme park rides customarily bar those under a certain height and also warn those who are pregnant or with physical limitations, to our knowledge no mention was made (either verbally or in writing) of concerns for those with mental disabilities.

And, while that was the extent of the issues for us regarding the ride, we found that we were still not quite "out of the woods" in The Wizarding World of Harry Potter.  After the ride, our other children wanted very badly to get into Ollivanders, so we waited the 45 minutes in line there--mostly outside, so we could have taken our older son out easily enough if necessary.  But once finally inside, he started to make noise in response to that being generated before the presentation--about which we were unaware beforehand--began.  In an effort to keep him as quiet as possible, I was whispering various things to him keep him engaged without raising his voice.  Nevertheless, an adult staffer there who had apparently not heard him making noise previously scolded us to keep quiet while the presentation was going on.  My wife was able to tell him that our son has special needs, and he then left us alone-thankfully our son did stay sufficiently quiet after that.  However, we had no idea that going into Ollivanders meant spending a prolonged period in a presentation wherein being quiet was part of the "ambience".  If that is not communicated to attendees in writing before entering, then staff need to be educated on how to deal with special situations.

You may think, with all that I have written, that we did not enjoy our trip to Universal Studios.  But, for the most part, it was enjoyable, and we would like to go again.  We do, however, appreciate you taking the time to read this, and hope that you will take our experiences into consideration to improve training and park policy to make each park-goer's visit as enjoyable as we believe you intend for it to be.


Anthony's parents

Saturday, January 23, 2016

We as a family have little interest in board games in general, but we did recently buy a "The Hobbit"-themed game of Monopoly for our younger son's birthday, hoping to match the enjoyment we have had with "Sherlock"-themed Cluedo--ordered from the U.K. since there are no such versions of the identical Clue in the U.S.--for our daughter.

Because Anthony would of course not be able to play such a game, we set it up on the table and had him sit next to us with his own TV tray, turned to the side so he could eat his dinner and then use his iPad (and not sneeze on us).  But as the other four of us were focused on our turns and transactions, we suddenly noticed Anthony turned toward us and watching the proceedings intently.

To be completely objective, it is highly likely that Anthony's interest in the game was directed at the playing cards or paper money that he could potentially rip apart, or the game pieces that he might examine or tap on some surface.  But how it appeared to us was instead rather poignant: it looked like he wanted to join in.

Anthony has been with us for twenty years now, so naturally we tend to think we have a handle on who he is and what he can do.  Yet he still challenges our assumptions from time to time.  For instance, he recently surprised us by jumping up from his chair, going to the entrance where he had removed his shoes, taking them to the opposite side of the living room, and putting them in their proper place on the shoe organizer on the inside of the closet door.  We were amazed again a couple of days later to find that he had put his belt back in my closet where he apparently has seen that I keep it next to mine.

He also occasionally reveals an intellect that is amusingly infuriating, particularly given his inability to otherwise understand and perform simple tasks.  An example occurred the other day when he grabbed the remaining two bananas off the counter.  Before my wife could get them away from him, he had peeled both and taken one bite out of each.  And if left alone briefly in the kitchen--which we try to ensure he isn't--we may come back to find that he has used that unsupervised window to take a choice item from the refrigerator and eat it.  Then, of course, on a far more serious note, those who have read this blog from the beginning will remember that my first post detailed Anthony looking to see if I was around before attacking his mother.

We know of examples of autistic children who appear not to have the intellect, but in fact do have it locked up inside; they have been able to communicate intelligently via computer.  Unfortunately, we haven't seen that from Anthony--something is definitely awry other than lack of speech.  As I referenced above, he doesn't understand simple things like why we wash our hands or brush our teeth--yes, I have tried to explain it to him--so getting him to do so is essentially a lesson in mimicry, and one not well performed.

But if there is something that we're missing regarding what he understands, we certainly don't want to limit what we permit him to do because we haven't seen him do it.  So, we want to try to give him the benefit of the doubt when including him in our activities.  We know that he isn't going to get Monopoly or Cluedo.  But, if we're going to play a board game, maybe we can include him by finding one that works with simpler thought processes.  To that end, we looked for easier games at the thrift store, and among the ones we bought was a 10-in-1 game box including Chinese checkers.  If that doesn't work out, though, we may have to instead look for other family activities to do with Anthony, because our fallback purchase was a Bob the Builder matching pairs game.  

Tuesday, October 27, 2015

I heard our daughter come home today and ask our younger son, "Did you hear what's going on? It makes me really mad."  My wife had a similar reaction when she told me about it earlier in the day, and our younger son's response when I had told him before his sister came home was a predictably incredulous, "Why???" 

It seems that someone read my blog and decided that the ways in which I have described restraining Anthony when he gets violent are--I will take liberty with these assumptions--malicious or dangerous, and reported me to the authorities that deal with such matters.  My own emotions when I heard this included a little bit of anger, a fair amount of bewilderment, and a lot of sadness.  My wife and I concluded that whoever this person is, he or she obviously doesn't know us, and surely didn't take the time to read much of the blog.

So I guess this post is ultimately for that person and any others who might inexplicably (to my mind) do the same thing--although this completely blindsided me, so I don't expect it to happen again. 

Anthony didn't come with a user manual.  Having an autistic child doesn't make people experts on them, except to the extent that they have learned from experience what works.  In Anthony's case, when he is violent, he is similar to a criminal attacker.  But, of course he is our son and the sibling to our other children.  How does one handle an attacker when not hurting the attacker is paramount?  I imagine most any parent would put the same amount of thought into it that I have.

However, again, I am not necessarily an expert on the matter. I am quite happy to hear from anyone who has ideas for subduing an attacker in a non-injurious way.  But please feel free to do so in the form of a comment, rather than in a manner that has even the slightest potential to cause us unnecessary trouble.

Thursday, June 11, 2015

It has become a family tradition of sorts for us to eat homemade pizza and watch a movie one night each weekend.  Our daughter, who is a big fan of just about everything in the "Marvel Universe", asked us to rent the first "Avengers" movie for our pizza-and-movie night recently.

As we watched the part where The Hulk goes berserk and Black Widow tries frantically to get away from him, our daughter paused the movie and told us that watching scenes of that kind actually cause her to remember times she has had to get away from a violent Anthony, including hiding in a closet until he passed.  She also mentioned the Lizard in Spider-Man as another character that brings back bad Anthony-related memories.

Interestingly for me, my wife and I had gone earlier in the day to see Love and Mercy, the biopic about Brian Wilson of The Beach Boys.  I knew a little of Wilson's emotional and mental issues, but I was surprised to see something that made me turn and exclaim to my wife, "That's Anthony!"  I will try not to give away a spoiler in describing the scene, but the way John Cusack as Wilson walked and complied when being told he needed to do something was startlingly similar to how Anthony walks and complies when given the same directive.

What do these things mean? I don't know.  It's not a great stretch to relate Anthony to an animal-like creature when he is angry, as he loses virtually all sense of reason.  But it seems it could be worth researching a link between a low-functioning autistic individual like Anthony and one who would be considered a normal human being except for some behaviors that have changed over time due to mental illness.  And, yes, I am of course aware that I was watching an actor's portrayal, but I am fairly confident that John Cusack depicted Brian Wilson the way he did based on interactions with him.

By the way, we have determined that Anthony's recent spike in aggression was due at least in part to a change in medication.  I say "in part" because we are still having episodes after reverting to the dosages he had before, including hitting one teacher with his fist and giving another a concussion by head-butting her.  I have worked a couple of times from home to keep him out of school after aggressive incidents, and also once when the staffer who handles Anthony when he is upset was off due to legitimate concerns the school administration had about being at Anthony's mercy if he went off.  And, unfortunately, although the instances of aggression have lessened, the intensity when he does get upset has not.