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.  

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.

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

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.