Autism Therapy: epilepsy

            Finally, the new school year has begun!  And everyone reading this is going to laugh at me because I actually miss Thomas a tiny bit when he’s at school.  If you read my blogs from May, there was a lot of apprehension and downright horror at the thought of three solid months with no Thomas-breaks.

            The neurologist finally got back to me about the EEG, but not that Friday or Monday right after it.  After I had left repeated messages inquiring about the results – the latter ones conveying a great deal of frustration and desperation – the doctor finally called back and did apologize for the delay.  She mentioned that she really wanted to comb the results and it took longer than usual.  Fine, I understand.  Why couldn’t anybody call me to tell me that?  Who knows?  They know how to bill insurance companies.  They know how to send bills to patients’ homes.  They definitely know how to cash checks with lightning speed and efficiency, but there seems to be a problem with picking up the phone and calling a worried mother.  Hmpf.

            Anyway, the reason it took so long to call back had to do with an abnormal “spike” in the EEG.  So I guess this is good, sort of…Thomas may have a seizure disorder, and we found something on the EEG, so it wasn’t a waste.  I’m kind of worried about what this spike means, though.  It was nothing so obvious that the doctor could diagnose epilepsy, but it was a tiny something.  She also mentioned that she was going to call Thomas’ pediatrician, but after she told me that I wondered why.  What are they discussing?  If she wanted to simply let the pediatrician know about the EEG, then why wouldn’t she just send a letter?  She’s actually going to call?  Herself, in-person?  So that’s been pressing my “worry” button.  She asked about the Clonidine again and when I said that it still helps Thomas fall asleep but doesn’t keep him asleep, her exact words were, “Yeah, see?  I think something else might be going on here.”  But what?

            To find out what, she has ordered a 24-hour in-patient video EEG for Thomas.  She assured me that the EEG people would be calling.  They never did.  I finally called them and was informed that the video EEG machine was broken.  Broken?  Can’t someone fix it?  Do they only have one of these machines?  Then she said that there weren’t any appointments available until the end of September anyway.  This sounds like an angry restaurant manager who doesn’t want your business telling you that they’re out of coffee just so you’ll leave.  I don’t get it.

            So this possible seizure disorder is apparently not life-threatening or very serious because surely the doctor would have known that the EEG machine was not working and would have sent the order to another hospital with working equipment.  I just don’t know what to do now.  How long am I supposed to wait for this stuff?  These people at this particular hospital have never been good about calling me for any reason, so how long should I wait for them to let me know what’s going on?  I’ll keep everyone posted.  Right now, I’m so frustrated that I’m ready to march in there, demand Thomas’ chart and EEG results and go to another doctor.  That may be what I end up doing.

            So Thomas’ teacher called last week to set up the long-awaited and much-anticipated home visit.  She is very nice (and young…it seems like every teacher and doctor I meet lately could be my age or younger) and Thomas seems to like her.  Her aide came over too and colored with the kids while Miss Teacher and I chatted.  Luckily, she didn’t have a long list of required supplies, just a few “must haves” and a list of “optional” things that would help out.  I mentioned to the teacher that I hadn’t yet heard from the transportation center about when the bus would be by to pick up Thomas and she thought that was strange.  She called me on Friday (as I was preparing the family for Labor Day Weekend out-of-town) and said that Thomas’ file was empty.  No bus request form, no emergency card, no permission slips – nothing that I filled out at the end of the last school year!  I had to take the kids and go into school and fill everything out again, but the bad part is that it takes the bus at least one week to begin picking up a new student.  So I’ve been taking Thomas to and from school these last two days and will have to transition him to bus service when SOMEONE calls me SOMETIME to tell me when they’ll begin picking up Thomas.  So if it wasn’t for Thomas’ inquisitive and diligent teacher (who also found that the school had lost the papers for three other students in her class – AND I’ve met several other parents who have the same problem) we would have been waiting for the bus yesterday morning and it would never have come.

            Why, why can’t anyone call me?  Doctors and schools have our home phone number, my cell phone number, my husband’s office number, his cell number, my parent’s phone number, their cell numbers, my mother-in-law’s phone numbers and my e-mail address.  So many ways to get in touch with me, but nobody seems to think it’s necessary.  Nobody (except the teacher – thank God for her) even thinks it might be a nice thing to do to keep me informed.  And I hate having to call and harass people, but you know what?  I guess that’s just the way it is.  Information will not be forthcoming, so I have to badger people until I know what I need to know.  I’m so angry about this blatant and frankly rude lack of communication I could just scream.  You pick up the phone, dial eleven numbers and tell someone something.  Is that really so hard?  Is it really so much to ask?  Clearly, it is.

            On a not-frustrated note, Thomas’ first two days of school have been great!  He’s been telling me so much about what he did during the day.  Today on his sheet, the “housekeeping” activity was circled, which blew me away.  Thomas, pottering in the kitchen?  Only if it means sprinkling a bag of flour over his head!  But he was apparently doing some pretend cooking in the little classroom kitchenette!  I asked him what he cooked and he said, “I cooked some little burgers.”  I thought that was so cool!  During his bath tonight, I asked him if he sang any songs and he said that he didn’t, but then he said, “Oh yeah.  ‘Open and shut, open and shut, the doors on the bus go open and shut, all through the town!’”  It’s typical that he should pick that particular verse, since he is so OCD about doors.  Earlier in the day, he had mentioned that a classmate was “driving the bus,” which made no sense, but I put it together with the information garnered from the bathtub conversation and concluded that they must have been play-acting the song.  I was delighted!  I remember a year and a half ago, when he first started preschool.  I would ask him about his day and he was completely silent.  He would look out the window of the car and I would glance back at him in the rearview mirror and see that he was paying no attention to my questions.

            We were at the cottage this weekend.  Thomas, if you can believe it, went swimming in the lake!  We were standing on the pier on Saturday and there were some other kids on the pier next door, getting ready for a boat ride.  Thomas asked, “What are those kids doing?”  I said, “I think they’re going on a boat ride and they’re going swimming.”  Thomas stood there for a second and then said, “Mommy, get in the water with me.”  I said something completely weird like, “What, this water?” indicating the water near the shoreline.  He climbed right into the water and began splashing.  After a minute, it became clear that our swimsuits were needed, so we changed and Hayley wanted to join us, so the kids spend a good two hours splashing in the water!  Thomas kept saying, “See, Mommy?  I’m not afraid anymore!” as he rolled around on his back in the water and thoroughly enjoyed the whole thing.  We were and still are completely shocked by this turn-around, but also overjoyed!  I just couldn’t believe it.  We’re thrilled!

            Everyone in our families has been talking about how great Thomas is doing and we know that he is doing well, but people say things like, “See?  See how he’s playing with those kids?  That’s great!” and “See how much he’s talking?  He’s doing so well!” and “Wow!  He’s in the water!  That’s amazing!”  Jonathan and I take these comments with a bit of an unsavory attitude because we’re the ones who had to teach these things to him.  Nobody gets that.  Everyone thinks that Thomas is doing these things of his own natural instinct.  He’s not; we have urged him repeatedly to talk to other kids, play with other kids, do what the other kids are doing.  It’s only been after repeated discussions about the lake water and watching other kids swimming that Thomas came to the decision that there was nothing to be afraid of.  We’ve had to teach him so many things that come naturally to Hayley and other “typical” kids and nobody seems to understand that.  My mother-in-law was saying to me, “Wow, Jen!  He’s playing with those other kids!”  I said, “Yeah!  Playing with other kids, swimming in the lake – he’s cured!”  We laughed about that, but these things have only come after so much hard work and talking to Thomas until we’re out of breath and showing him and guiding him and teaching him until we’re exhausted.  We just want a little credit for filling in some of the holes that autism has punched in our son’s brain.