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.

Sincerely,

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.

Sunday, March 15, 2015

I experienced firsthand today what Anthony's assigned staff member at the service provider did last week.

Anthony had been a little on edge at times yesterday, and had not had a bowel movement.  My wife and I discussed whether it would be all right to take him to church this morning, and ultimately decided to do so with the idea of taking him home immediately if he started acting up.

Since I'm always looking for ways to get him (and myself) more exercise, I chose to walk with him to church. This 15-minute trip isn't terribly unusual for us when the weather is reasonable.  My wife and other two kids were planning to come a few minutes later by car.

Within three or four minutes, Anthony started trying to hit my arm as we walked; that is an indication of dissatisfaction.  I didn't give it a great deal of thought because he hadn't been completely happy yesterday either.  After a few more minutes though--but still a few from our destination--he had progressed to the highest level that I customarily see, wherein he lowers his head and tries to butt it against my elbow multiple times.  We were now closer to the church than to home, so I tried to just keep him at a distance, use a stern tone with him, and get him to keep walking.

However, he next swung his clenched backhand and hit me in the jaw. I have never seen him do that before, but I am certain this is what his handler described to me as his punch.  At this point, I abandoned designs of making it to church and turned around.  But Anthony was now in full attack mode.  I was simultaneously concerned with getting him home; keeping him from attacking me; keeping him from wildly flailing himself into traffic--we were by this time out of the purely residential area onto a main street, albeit two lanes--and hoping I wouldn't end up with a ripped suit through it all.

I tried staying behind him and directing him to walk; I tried walking a little away from him to the side; I tried walking in front of him.  But rather than getting him to return home without further incident, he instead charged at me every few moments, head down, trying to butt me in various places.  He succeeded in butting me in the chin (the same spot he got me with his backhand), the elbow, and the wrist.  My elbow doesn't feel anything to speak of, but my chin and, to a lesser extent, my wrist, are somewhat sore.

I tried calling my wife but got voice mail--probably because she was trying to get the other kids out the door.  Anthony and I were by now back in the residential area.  A lady and her daughter or, perhaps, granddaughter, were crossing the street in front of us while Anthony was howling because I was doing my best to stay away from him.  I called out to them, "Please keep your distance.  He's autistic and he's really upset right now!" Anthony was so unpredictable at this juncture--kicking a water meter cover, throwing himself on a lawn next to the sidewalk--that I just didn't know if he would have any sense of reason if other people were nearby.

My wife and other kids finally showed up in our smaller car rather than the SUV (as I anticipated, which was why I tried to call so they would change vehicles).  We discussed whether they would return home and get the SUV or go to church since they were running late, and then have my wife drive home and change cars.  We decided on the latter.

Perhaps due to the break in the action, so to speak, with me talking to my wife while Anthony was standing a way apart, after they left I was able to get Anthony to walk with me without charging.  He was still howling quite a bit and clearly not happy, but I managed to keep the distance AND get him to come along without another attack.  Because of this, I called my wife again and told her I thought we would get home without her needing to come retrieve us.

As I was outside with Anthony, at one point putting him in a headlock to reduce his ability to butt me (while in a suit!), and then later after we had gotten home, I realized this incident would not have gotten very far had we been in a controlled environment.  Here at home, I would have gotten him into the headlock as soon as his intentions were clear.  I would have wrestled him to the floor and, possibly, leaned on him to make it uncomfortable to breathe.  Those strategies have worked well enough for me in the past, effectively taking the fight out of him after a while.

But those tactics aren't available outside.  Even if I weren't in a suit, I would not have wrestled him to the sidewalk.  And it's even worse for those working with Anthony, because they would not choose the same tactics--even though I would give them permission to do so--because of perceived potential liability issues. It is little wonder that the police officer put Anthony in handcuffs the other day.

The overarching aspect of all this that is particularly unsettling to me is the escalation beyond anything we have seen previously.  I have never really feared Anthony before, but I did a little today.  Of course, I was not in the position to use the usual tactics at my disposal, as I wrote above.  But my wife agreed with me that if it had instead been her walking with Anthony, the ferocity of his attack would have left her crumpled on the sidewalk with a concussion.

Naturally, this opens a new can of worms for us.  When upset, Anthony has always been willing to attack if he thinks he can hurt someone.  That has uniformly precluded adult males.  But if he has gone beyond that, and if he continues to be even more aggressive than in the past, that will change entirely the way we look at who he can be with, and when he can be with them.  It is altogether possible that we will be without alternatives to either keeping him at home or getting him into a facility that is designed to handle those who are dangerous to others on a regular basis.

Sunday, March 8, 2015

Anthony had another seizure this afternoon.  It's been just a little over six months since the first one in September.  Interestingly, I had been thinking recently that if he could go for just a little while longer without one, we would probably be in good shape.  One week beyond six months is statistically insignificant, I'm sure, so I'm guessing we shouldn't be surprised to see more in the future.

I was again here when it happened, and was happy for that coincidence so my wife didn't have to deal with him; I also recognized what was occurring immediately whereas she didn't see it happen previously.  This time, he was sitting on a chair rather than standing when it came on.  I managed to get him off the chair quickly, lay him on the floor on his side, and get our other son to bring a pillow to place under his head so he wouldn't hit it on the floor.  I thought about trying to get him to his bed after it ended but my wife talked me out of it, so he went to sleep with the pillow in a walkway.

He lay there for four hours, intermittently sleeping and waking up.  We weren't sure about when to intervene, and did so only when he started to lift himself up and then turn to lie down again.  We're hoping he will be able to sleep without waking us up in the middle of the night.

My wife and I discussed whether to send him to school tomorrow, as we are of the understanding that we should be watching him for the next 24 hours.  However, we did subsequently send him to school when this happened before without incident.  We have decided, however, not to have him go to his service provider after school, just in case something were to happen there.  Given the handcuffing incident on Wednesday, they can use a break from more issues with Anthony again so soon.