Autism Therapy: Alzheimer's disease (AD)

            We’ve been having good days and bad days recently.  Some days, Thomas has gone to bed and stayed there without getting up and making requests; other days (like today, for example) he’s still up after being put to bed, playing with a car on the counter.  At least he’s being quiet.  I’ve been trying to wear him out during the day and especially during the early evening, if possible.  Exercise during the evening really seems to help.  For instance, there was a school fundraiser at Chuck E. Cheese’s on Thursday night.  We went and stayed for a few hours and when it was time to go home and go to bed, Thomas didn’t protest.

            Friday night, we had to take Thomas to the hospital for a chest x-ray.  He’s had a heart murmur since he was about eighteen months old and his pediatrician only recently asked me to take him to a pediatric cardiologist for evaluation.  Unfortunately, the cardiologist to whom we were referred doesn’t have an appointment available until July 5th, so that’s when we’re going.  The doctor wants to see a chest x-ray when we get there, and I decided to get that out of the way now.  When I called the scheduling service, I peppered the poor woman on the phone with lots of questions:  “Will he have to wear a gown or will he just have to take his shirt off?”  “Do they ever sedate children for x-rays?”  “How many pictures are they going to take?”  “Will he have to lie down or will he be standing up?”  She must have thought I was crazy, but I eventually explained to her that Thomas is autistic and I need to draw him pictures and explain everything in detail to adequately prepare him.  She understood, but couldn’t answer many questions.  I had to guess a lot when I was drawing the pictures.  I told Thomas that he would have to take his shirt off (which he didn’t; he was able to leave it on and didn’t have to put on a gown), but most everything else I got right.  Except my rendering of an x-ray machine.  The last x-ray machine I saw was a portable one, so I drew something that looked like a cross between an old-time camera and an accordion on a large ceiling-mount.  Jonathan went into the x-ray room with him while Hayley and I stayed in the waiting room.  It only took a few minutes and Jonathan said that Thomas did really great!  He was scared at first because the x-ray machine was much larger and more intimidating than I had depicted.  When Thomas is afraid, he uses a very quiet voice and Jonathan said he was doing that when they first walked into the room.  He became more comfortable after a minute, though.  Also, the technician was very nice and understanding.  Thomas responded well to him.  They gave him a little panda bear Beanie Baby for being a good boy (the receptionist gave Hayley a little teddy bear too, “to avoid fights,” she said) and then, as promised, we took the kids out for ice cream.  Ahhhh.  So that’s behind us.  I can’t wait to see what happens on July 5th, when they stick EKG monitors on Thomas’ chest.  More expert (stick-figure) rendering is in order.

            Anyway, he went to bed very nicely on Friday as well.  Earlier that day, we participated in a “Moms and Tots” playgroup organized through a church in the next town over.  I found out about it from a very nice lady whose daughter is in the same play-school class as Hayley on Tuesday mornings.  We met at a park very near Thomas’ school (he was off on Friday) and played for a while.  There were tons of kids there and plenty of moms for me to chat with.  Thomas and Hayley liked it and I got a schedule for the rest of the summer.  They meet at a different park in town every week during the summer, and in the winter they meet in the church basement where there are lots of toys for the kids to play with.  Best of all, once a month there’s “Mom’s Night Out” when the moms all go out for dinner together.  I’m looking forward to that!

            When it was time to leave the park, Thomas protested at first but when I grabbed my bag and started walking to the car with Hayley, he joined us and was very good!  Of course, that was after I explained to everyone that Thomas has a really hard time with transitions and leaving “fun” things.  They got to watch me waltz my two children to the car and calmly strap them into their car seats.  Actually, other moms had more trouble than I did, which was refreshing…sort of – not in a mean way.  A lot of the other moms have little babies, so they were weighed down with double-strollers and huge diaper bags.  It feels good not to have to lug that stuff around anymore…and a little bittersweet.

            We keep spending as much time outside as we can to get plenty of fresh air and exercise, but Thomas seems to have more energy than I can possibly wear out him.  We’re still waiting on that swing – I’m going to call again tomorrow and complain because the wait is becoming ridiculous.  We are very eager to see if this swing can help us at home.  I’m going to call Thomas’ neurologist and discuss some medication options that might help.  There’s a student in Thomas’ class who was autistic but is now taking medication intended to help Alzheimer’s patients and his symptoms have improved dramatically.  We saw him at Chuck E. Cheese’s on Thursday and he was very excited to play with Thomas.  His mom says that he talks about Thomas all the time at home and was looking forward to seeing him at the restaurant.  He took Thomas’ hand and said, “Come on, Thomas!  Let’s go down the slide!”  Thomas went willingly, but didn’t really say much to this boy, probably because the whole thing was out of context; Thomas expects to see him at school.  He recognized him and was happy to see him, but seemed a little confused. 

Anyway, I’d like to discuss the Alzheimer’s meds with Thomas’ neurologist and maybe talk about medication that could help calm him just a little bit and help him focus.  Thomas is like a broken record sometimes with the repetitive behaviors.  He’s re-started his obsession with opening and closing (slamming) doors, and when he starts talking about something that has piqued his interest in some way, he won’t change the subject for anything.  It gets exhausting.  Hopefully, I can take Thomas to see his neurologist and he’ll do better than he did a year ago.  Last time he was awful, but he’s improved a lot over the last year with doctors in general.  I’d like to get that done before vacation, because that was exhausting last year.  Every year we question whether we want to do the family vacation thing next year, but by the time the next vacation rolls around, we’ve largely forgotten what last year was like.  My parents keep telling us that every year it gets a little easier, but it seems that just the opposite is true!  Either way, going on a family vacation together every year is important to us, so I’m sure we’ll keep doing it. 

P.S. - I just checked my e-mail...the swing should be here tomorrow!