Hoarding Spoons

These have been the most turbulent three weeks ever. It's like suddenly one day someone flipped a switch and the meds stopped working again. For some people, I think that giving their kids meds is lazy. I resisted for a long time. But now I know that meds are the only way BW has a chance at anything resembling normal. He screams, and fights. Not like any NT kid who just wants to get his way. We've had such violence here that I've never seen before. He's hurting people, and not just the ones his size and smaller. He's so strong now! He even gave his therapist a bloody lip one day.

Last week we tried a new med, and after adjusting times and diseases, things seem to be calming down. The med is scary, and it freaks me out that its actually working on him. He's almost back to 'his' normal now. I think a little more time and tweaking will do the trick. It hurts my heart to know that my 7 year old is doing well on strong antipsychotics, but that's for me to deal with, not him.
I've had to pick him up early from school many many times in the past few weeks. The last time being yesterday. I went to the next county to pick up prescriptions from his doctor, then got back to our hometown and went to the pharmacy to fill one. They said 20 minutes, so Little and I cruised around the store for a little bit. She decided she needed to potty, so in we went. As I walked her into the restroom, the school called. He was boiling up to nuclear meltdown time, and they knew putting him on the bus at the end of the day wouldn't be good or safe for anyone. So Little and I packed up and headed to school. (We didn't even reach the school before I got a text saying the Rx was ready at the pharmacy. Sigh.)

When we got there he was doing "just okay." I signed him out and the principal walked us out to the car,while I apologized for the trouble, like usual. On the way out to the car, his shouting and whining and growling stopped. He stopped dead in his tracks. (oh boy, here it comes, right in the school bus lane.) He kicked off a shoe. (Crap.) He tried to steal the principal's umbrella. (Why couldn't I have kept his in the car?) He looked at me and started growling again. Then I saw the strangest thing. He picked up his show and dumped out a plastic cafeteria spoon, bent in half. (WHAT??) I asked if that was his problem and he held up his palm, and calmly said "yeah, I'm good now."

I wish he would have just told someone that his foot was uncomfortable, instead of this huge process. It was true though. As soon as the spoon came out, he was fine. He wanted to wait until he was outside the building before admitting the spoon was there, so it wouldn't get taken away. So bizarre.

Then he insisted on washing the spoon and eating his dinner with it. What in the world? (Ok, so I'm the one who insisted it get washed.)

Tell me about some simple things that have turned into a huge fiasco in your corner is Special Needs Land ;)

Why does my kid keep getting strange illnesses that kill the Pioneers on the Oregon Trail game?

Quite the series of events has unfolded this past week.  I’ll save you the details on the stuff that isn’t autism-related (unless you really want to know), and just get on with BW’s stuff…

We went to the surgical consult at Riley Hospital for Children with the ENT doc, and he said that BW doesn’t meet the criteria for recommendation for tonsil and adenoid removal (I know I touched on this in my last post...)  This concerned me, not that I really want for him to have surgery, but because he gets sick SO. OFTEN.  And because on any given day of the year, if you look in his mouth you can see these giant, ping-pong ball size tonsils just sitting there blocking his airway.  He gags on his food, and he stops breathing at night. This freaks both him and me out.  So we were referred to the sleep study team.  Whomp-whomp.  Nothing there either.  So two  weeks go by and here we are, BW is sick again.  It’s so hard to tell sometimes with him if there aren’t any visible symptoms.  He won’t tell you when his throat hurts, you have to just listen for smurfiness in his voice.  He won’t tell you when he has a head ache, he will just scream and terrorize the entire household (including hurting his sister on her head).  He doesn’t tell you when his stomach hurts, he will just look you in the eye and then throw up on the white carpet.  He doesn’t tell you when his sinuses are clogged, but that one is at least easy to identify.

So on Thursday we noticed the stuffy nose.  Friday we noticed the drainage changed colors and his voice got a little crackly.  Saturday during the day he was ok, but he started gagging a lot, from mucus drainage.  So I begin to wonder: Is it seasonal allergies? The farmers nearby have been tilling the fields to prep for planting. That usually brings about some sinus gunk.  Yeah, that’s gotta be it, right?  So we went to the church’s fundraiser, then had some lunch with friends  that afternoon while daddy was working. He started doing the gagging thing and both kids were getting cranky, so we went home.  As the next few hours passed, I started noticing his eyes getting puffy, and his sinus area swelling some.  Time to watch more closely.  He felt cool to the touch, so I didn’t see a reason to take his temp just yet. (He fights it, and it makes for a rough next several hours, even with just the temple scan).  Daddy gets home from work and we watch him closely.  7pm rolls around, and we started seeing big changes, so we decided that it was time to go to UrgentCare. 

UrgentCare, not emergency.

When we got to the office 40 minutes later, I noticed a few red spots on his face.  I filled out the paperwork, and waited to be called back to see the doctor.  15 minutes passed, a very reasonable time frame for a place where we had no appointment.  During that 15 minutes, the few spots turned to huge red blobs with a few little bumps here and there  around his eyes, nose chin and cheeks. 

So the verdict here is:  Although his skin was strangely cool to the touch, his temperature was 103 F. He has an ear infection, sinus infection, and Scarlett Fever (a severe form of strep that resulted in the death of many a Pioneer in the pre-antibiotic days.)  BW had strep in February, again in March, and now the Scarlett Fever.  How does this not make him a good candidate for removal of these bacteria-trapping, always swollen and painful glands that keep him from  sleeping well at night, and keep him sick all day?  (Yes, before I get told-off, I know that for most people the tonsils serve their purpose well and keep people from getting sick, but for some they do the opposite.) 

On a lighter note, when I told my husband the diagnosis, he said “People still get that?”  This has been the same response from just about everyone.. I didn’t realize it was still around either.  But if something is to be found, this little Ninja is apt to find it. Unless it’s something we want him to find, that is. ;)

So now I say again, Why does my kid keep getting strange illnesses that kill the characters on the Oregon Trail game? in elementary school? (you know, on the old IBM computers with the giant game disks?)  I’d better watch letting my daughter play outside.  She is 3 years old and weighs 27 pounds.  She might get carried off by a hawk or bald eagle or something.        {O_0} 

Adapting, and Trying to Find Answers

[NOTE: This was posted a day after it was written, because I dozed off while typing..]

This year has definitely had its ups and downs.

In January BW spent six days in Methodist hospital in the C1 unit.  This was SO hard for all of us.  Hard on him being there, not able to come home, hard on us as parents in so many ways we can't even list them all, and hard on extended family because they took turns caring for our younger daughter, who wasn't allowed on the unit.  We drove over an hour each way to see him every day, and although we got there in the morning and most of the day, they said it wasn't enough.  They wanted both of us to be there for his every waking moment, and just watch us parent him.  It was hectic all around, and we couldn't do it as long as they wanted us to.  We understand that we need to be there, we do.  We WANT to be there.  But we both have jobs that we weren't able to go to, and a daughter who needed us.  And our families were being bothered by watching her.  And a dog.  He was released early from C1, and we were put on a waiting list for in-home behavioral therapy.  I have called and called, and I'm not getting any answers as to when a place might open for him.  The only place who offers in-home visits from the therapist doesn't return my calls, and passes me another number within the company every time.  But I keep trying, because I keep hearing that once you finally get in, it's the greatest thing since sliced bread.

He has had some progress since The January Incident (by the way, after insurance paid their part, our share is over $11,000), but I think getting back into the school routine has helped tremendously.  He even had great notes in his communication book the last two days before spring break.  Yes, the dreaded no-routine, again hectic time when there's no school and still no day care in town will (or "can") take him during these school breaks to give him some sort of structure..   He always seems to regress and take forever to recover from school breaks, but when he went back this Monday, I got another good note.  This is progress, people!

February brought strep throat and an otic infection for both of us.  Twice for him...  This led to this Tuesday's visit to the ENT specialist at Riley Hospital for Children in Indianapolis.  Concerns of mine were frequent strep, and sleep apnea, shouting out in his sleep, thrashing, and getting out of bed every night.  This was supposed to be his second day back to school since spring break, and he missed it for this appointment.  Another break in routine.  He did fine here today, so this means he is adapting.  This is yet another good thing.

Did you notice I said "here," and not "there?"  That means that we are still at Riley, and it's just after 3:30am on Wednesday.  The ENT specialist said there was a need for an immediate sleep study.  So as I type this, BW is snoring away in a bed a few feet away.  He likes going to the doctor sometimes, and today was no exception.  He smiled all the way here (an hour drive), and we talked about Mommy and BW having a sleepover together at the hospital.  When we got here, he was ready for bed, very sleepy.  Awesome, right?  Not quite.  He got scared when he was told that we needed to put some "stickers" on him in certain places before he could go to bed.  We started out by showing him the sticky pads without the wires attached.  This went ok-ish.  We took a little break, then she opened the cabinet and pulled out the wires that would be attached.  He instantly started gagging, then vomited all over himself when he saw the wires (from nerves and fear).  He freaked out when he saw them because he said he didn't want to be a robot.

By the time it was all connected, he looked like a Borg drone, and I felt so bad for him because he was SUPER scared the whole time.  We stopped several times to let him regain composure, pray for calm, and once to call Daddy we could do bedtime prayer together on speakerphone.  It did calm him for about 2 minutes, then panic mode struck again as more "stickers" and electrodes were attached.  He didn't like the head wires. (who would?)  He told the technician that putting "toothpaste" in his hair was gross and he didn't want it.  So we had to do a lot of convincing to get the rest accomplishied, but it happened.  I got him cleaned out of his vomit clothes, and gave them to the front desk to wash.  I laid down in the bed next to him until he fell asleep with his entire head wrapped and taped to keep all the wires from detaching.

Update to come. It's 3am and I'm signing out for the night.

Quality Time

My husband took a couple of hours off work Thursday and went to Dad's Doughnut Day at school with BW. According to BW, they ate doughnuts, sang the "I love my Daddy" song (which neither of us knew about), and played a board game called Green Eggs and Ham. That would have been the highlight of his entire week, but then he spent Friday night with Meemaw and Saturday night with his Aunt and cousins.... This is very good for him. He doesn't get much time away from home other than school. He hasn't stopped talking about the game and doughnuts with Daddy, and all the things that happened during the sleepovers. He needs so much more time like this, it just seems hard to find someone willing to give that extra time to him. We're not trying to get time away from him, but the boy needs more interaction with family and friends. It's good hearing him talk about these things, he keeps going on and on! When he came home, he SHOUTED "Mom! I came back!!" ..like he was concerned that I thought he wasn't going to come home. ♥ my boy. I just wish everyone saw the sweet sweet brilliant kid that lives inside the shell of anxiety and behaviors that is seen in public. Did I mention that I love him?

I heart that glorious time between 9-4 or 5.

BW has been so calm and polite and compliant lately... From the hours of 9-4 or 5. The new meds are making things so much easier for him to concentrate and sort things out. He is speaking in full sentences when reminded to, and is learning to be more patient. Not completely patient, but more patient... Between the hours of 9-4 or 5. Besides those hours, it is total chaos here. Resume the screaming, obsessing, violence and nuclear meltdowns over trivial things. This combo is brilliant, but there is a definite line that gets crossed the very minute they wear off. (no, when the meds are in effect, he doesn't seemed "doped up," and it is for his benefit, not just our convenience.). Just a peek into how our days have gone lately. People at church the last couple of weeks have been encouraging in saying they have noticed big changes the past couple of weeks. (some of them know about "the big break" and others don't.) I've been in love with the new "coctail" he's on, but only between the hours of 9-4 or 5.

As for me? My nerves are still a wreck, and any prayers would be greatly appreciated for our whole spectrum family. Because really, when there's someone in the house on the Spectrum, everyone is affected. Keep BW, sister, Mom amd Dad in your thoughts please, as doors continue to open for us.

The Dentist, Sedation and Mommy not being present.

BW has a sedation dentist appointment tomorrow morning.  No major work done, but he has to be sedated in order for the dentist to come out of this with his fingers intact, and for BW's nerves to not be fried.  They are doing a cleaning, and considering sealants for the back teeth since he is a grinder.  I told them if there are any cavities that need work, to just do all they safely can while we are in there. I'm somewhat ashamed to admit that this is his first dental exam,  but at least I'm taking him now, right? I was told at the consultation that his teeth seem healthy and they don't anticipate any issues.  The boy jad better have healthy teeth, he didn't even jave any until he was about 10 months old!  

The bad part? Mommy can't be there for the appointment. He will be in the capable hands of his Daddy while I drive my grandpa to have a medical procedure out of town. 

NYE

Given the incredible stress that BW had over the past couple of weeks due to a bad med change and breaks in routine, we opted to stay home and have two friends visit for NYE. This was a good good decision, and the only thing that got broken today was a plastic cup and set of RCA jacks that came with the new DVD player that got set up a week ago.. one of the pins from the plug got broken off inside the tv when BW yanked it out. But all in all, he had a good day. He even said Happy New Year to every single dag-blasted person we saw in Walmart this morning, and hugged most of them (while I begged him not to and rolled my eyes as I coaxed him to the next aisle). Normally he just screams in Walmart. I'd call this holiday a success.

.. And by "this morning" I suppose I mean yesterday morning. Since I'm still awake at 5:30am, you could see how I'd make that mistake :/