Autism Therapy: Down Syndrome

            We’ve been so busy that I just haven’t had the energy to write lately.  At night, I just want to hang out in front of the TV or escape into the world of Harry Potter for a while.

            Last week was very busy for our family.  Thomas had that video EEG on Wednesday and Thursday so he missed school those days.  He was actually very good for the test part which consisted mainly of just hanging out.  The hook-up and un-hook was very traumatic for us and Thomas especially.  Jonathan had to hold him down while the EEG technician super-glued twenty-four leads to Thomas’ head; each lead taking approximately one and a half minutes from start to finish.  It was awful.  Thomas was freaking out, and the nurse who was putting these things on Thomas seemed extremely frustrated with him.  He kept screaming “Ow!  It hurts!  Mommy, help me!”  He certainly knows how to play his mom!  The “Mommy, help me!” thing went on for quite a while.  I cried intermittently.  But the nurse, despite Thomas screaming about how much it hurt, kept telling Thomas that it didn’t hurt, there was no “ouch,” no boo-boo, etc.  I was getting mad!  How does she know how that super-glue and air-gun combo feels to Thomas?  No, there weren’t sharp needles and certainly nothing that would hurt an average person, but to Thomas, that air-gun thing and the acrid smell of the glue might have been torture. 

            During the testing part, especially after hook-up on Wednesday, Thomas was really good.  Because it was a video EEG, Thomas was on camera the whole time.  A nurse/technician was in the room with us from beginning to end making sure that the camera was pointing at Thomas every second (except in the bathroom).  He stayed on his bed most of the day and was very well-behaved.  Nice volunteers kept coming in to bring toys and movies for Thomas and he was very pleased to learn that this whole test thing included all the chocolate ice cream he could eat.  And he ate plenty.  Whenever he seemed to be getting restless or antsy, we’d run to the freezer and get a little ice cream cup.  It worked really well.  He had ice cream with every meal and for every snack.

            During the night on Wednesday was the really important time for the test since it is Thomas’ sleep problems that brought us to this point initially.  We were not allowed to give Thomas his sleep medication, so he was up until 11:30 p.m.  He got up a couple of times in the night.  He tried to crawl into my recliner at 4 a.m. but it was too small for both of us, so I got into his hospital bed with him.  We stayed there until he awoke at 6:30 a.m.  That was when his breakfast came!  Is it just me, or is 6:30 in the morning way too early for food service employees to be bringing clattering trays of lukewarm food into children’s hospital rooms?  Anyway, that’s what woke Thomas up. 

            In addition to keeping the camera trained on Thomas, the attending technician also kept a log of Thomas’ activity every few minutes or so.  When we woke up on Thursday morning, I looked at the log and noticed that the computer recorded two “events” during the night.  One was at 12:30 a.m. and the other was about two hours later.  These are obviously neurological events, so I’ll be eager to hear what the doctor has to say about them.  We have to wait two weeks for the doctor to review the test and call us back.

            While Thomas was being really good on Wednesday, Jonathan’s mom came to see him.  Thomas sat in his bed and talked for nearly two hours, nonstop.  It was exhausting for us to listen to, but it was so funny too!  Jonathan finally realized what was going on with Thomas; since he was tethered to a machine and unable to go very far, he was getting rid of all his energy through his mouth.  He would not stop, I tell you!  It was really funny and interesting.  I knew Jonathan was right…I couldn’t believe that Thomas was being as still and well-behaved as he was, yet his body had to find some way to expend the pent-up energy.  Thank goodness he decided to talk it out.

            The frustrated nurse came back again on Thursday to take the leads off Thomas’ head, and this experience was almost as horrible as putting them on.  They put mineral oil or some kind of spirits on his head to dissolve the glue (non-acetone nail polish remover, I think) and Thomas was not having any of that.  He freaked out again, but at the end of it the leads were off instead of on.  We rinsed his head and Jonathan took him to the play room down the hall while I waited (and waited and waited…why are hospitals so slow to discharge patients?) for the nurse to give me discharge instructions.  Every time I have been in the hospital, I seriously consider just walking out after the doctor gives me permission to go home.  What were we waiting for?  Thomas was not sick, not post-operative and had no wounds or dressings or fevers that needed care …why do we have to wait forever to be officially discharged? 

            Of course we didn’t just walk out.  We waited around for the very important instructions that told us that Thomas is on a “normal” and unrestricted diet (knew that) and can resume normal activity (knew that, too).  Thomas was very glad to be home and just this weekend got rid of the rest of the glue in his hair.  I’ll make sure to let everyone know about the results when we receive them.

            Thomas and Hayley had a fun weekend!  It started on Friday night when the Cubs clinched the National League Central division title!  Woo-hoo!  My sister and her fiancé came over to watch the game and we had a great time.  Saturday, my mother-in-law picked the kids up and took them to her friends’ ten-acre property for the big Hayride and Bonfire Party that they have each year for everyone’s grandkids.  Thomas and Hayley went with their cousin and Jonathan’s cousin’s son.  That meant that Jonathan and I had some time to ourselves to remember what it was like before we had kids.  We didn’t do much.  We bought a movie at Target and brought it home to watch.  We baked an apple pie and I did a lot of painting (we’re re-painting most of the rooms in our house).  Very exciting, I know.  But it was so quiet!  It was so peaceful!  Then the kids came home this afternoon just as the Bears were officially losing the game against Detroit and thus ended both the quiet and the peaceful.  Especially for Jonathan.  I never realized that a football game, either won or lost, could so greatly affect the general atmosphere in our home.  So alas!  Another week of grumbling and head-shaking.  Thanks for nothing, Bears!

            Thomas’ teacher called us yesterday.  She mentioned that Thomas is the highest functioning child in her class as far as language is concerned so she wondered if it would be okay if he spent some time in another classroom with kids who can help him learn some of the nuances of social language.  Apparently, there’s not a lot of talking amongst the kids in Thomas’ class and his teacher (and the principal, with whom this was discussed) wants to challenge him a bit more and help him really progress this year.  I was very happy to hear that from her since I’ve been a little disappointed in Thomas’ curriculum so far.  The first week was all about colors.  Great, but Thomas already knows his colors.  The next three weeks are about shapes.  I’m a little more on-board with that, since Thomas could use practice drawing shapes.  But still, he knows a lot of shapes.  I don’t really want this year to be a review for Thomas; it has to be a little more challenging so that we can really prepare him for kindergarten.  I never really understood the reasoning behind Thomas’ class-placement this year anyway.  There are no other autistic children in his class, but there are at least two kids with Down Syndrome and other varying disabilities.  I’m not sure what this means.  I know that Thomas is one of the oldest in his class, but I don’t really understand anything about why this class was chosen for Thomas.  Duh…maybe I should ask!

            So Thomas will go to spend play time in another teacher’s class just a couple of times a week at first.  Depending on his response, they may take him there more often.  I’m very interested to see how that goes and if it helps Thomas with social language skills.  His teacher said that the “demographic” in the other classroom is mostly kids with slight to moderate language delays.  I’ll make sure to let everyone know how Thomas responds to this new routine.

            I was really dreading the video EEG thing, but now that it’s over I feel like things are calming down a bit.  The first half of the week is usually a little hectic for us with Hayley’s dance class and Kid Rock.  We’ve been doing okay with the dance class so far; Jonathan has been home by 4 p.m. the last two Tuesdays in a row so my sister Tina didn’t have to come and take care of Thomas for us.  We’re having our windows replaced sometime in the next three weeks and I really want to get the air vents and ducts cleaned before winter hits, and the bedroom carpeting…I always feel like I can only have a few tasks on my mind at a time and no more than that or something will have to give.  The EEG is off my plate, but depending on the results, there’s a good chance that I’ll have to take Thomas in to see the doctor soon.  I can’t really file all of that away until I have the results, if any.  If any medical professional says the word “inconclusive” in reference to that EEG, I’ll scream.  You’ll probably be able to hear me from there.