Where did THAT come from?!

So thankfully it's been a while since bathtime was a full-on battle.

Which is why I was totally surprised the other day when I went to give Bitty his bath only to have him not only refuse (yeah, that's not so rare but usually he gets in even while he's complaining and saying he's not taking a bath) but actually start to have a meltdown over it. A screaming, flopping, fit.

When he jumped into the tub specifically to pull the plug, I took the opportunity to very quickly start scrubbing him down. Because I could tell this wasn't going to be one of those times where he fights it and eventually goes along, he was digging in for the long haul. And I just wanted to get it over with, because he needed to go to bed earlier than usual to get up for a dentist appt (checkup) early the next morning.

(As an aside, gotta love this little exchange with dh:
dh: "who scheduled their dentist appt for 8am?"
me: "you did."
dh: "are you sure?"
me: "yes. you scheduled it when you were there for their last appointment."
dh: "oh yeah... why would I schedule it so early?"
me: "I have no idea."
dh: "oh wait... I was thinking of their school schedule, I forgot they wouldn't be in school."
(in July, hehe)
me: "hehe")

Anyway, so I quickly grabbed the soap, blocked his exit from the tub as best I could, and did the fastest wash-down I have done in a long time. As you can imagine, he screamed at the top of his lungs and tried in true linebacker style to push his way out of the tub.

He eventually succeeded, but luck was on my side. The drain was still plugged, and for whatever reason, he just couldn't leave it alone so he jumped back in to pull the plug again.

I had just enough advance warning that he was going back in to grab the shampoo and do a quick scrub of his hair (good thing he's sporting a buzz). I had to get him back in there a couple more times to actually rinse it sufficiently, all the while he was screaming and going ballistic, but we made it through and then I got out of his way and let him out.

In typical Bitty fashion, the end of the bath didn't calm him down in the least. He was so mad he tried to kick the bathtub (to "break it" although I was more worried about his feet than the tub), still shrieking about the injustice of having a bath.

It took him a while to calm down, and he got upset all over again when I told him it was time for bed.

He pointed indignantly out the window, "but it's still BLUE out!!!"

I tried to argue the point, but quickly conceded since I could tell it would only be a continued meltdown in his bedroom and totally defeat the purpose of going to bed early (for him to actually get some rest). So I told him he could stay up until it was "black" out.

And he was fine after that, aside from a few more muttered complaints about the bath ("do I want to take a bath? I don't, do I!! I don't look happy about dat bath!"). And it dawned on me that the whole reason for the bath fiasco could have been the fact that I started bathtime before it was totally dark out.

What was I thinking?!

In hindsight it seems obvious, but it wasn't at the time. With some effort we've managed to convince him that baths are needed every night and we've more or less gotten into a routine of baths right before bedtime. It's not always at the same time (but now that I think about it, it is pretty much always after dark), so I didn't really consider the time factor and didn't think about the fact that the sky turning black is apparently part of the whole bath / bed routine for him.

We have two weeks to undo that particular part of the routine, because school is about to start and it's going to be a while yet before it gets dark early enough to wait for dark on a school night.

Wish us luck!


(p.s. the dentist appt went well, no cavities, yay!)

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Stress and gratitude

Apologies in advance for a bit of a "downer" post (it gets more upbeat at the end of you'd like to skip ahead, lol). It was an exhausting weekend (and not really just this weekend) and sometimes writing about it helps me sort things out in my own mind, see patterns that I miss "in the moment," and brainstorm ideas.

Little Bitty has been having more difficulties than usual lately and it's wearing us both out. Part of it has to do with all the disruptions in his schedule. He was doing much better before the break over the holidays, and then before he could adjust to being back in school we had a snow week, and another holiday. A day off for a dentist appt (scheduled six months ago). Then we had two early-release days. And then last week we had to keep him home sick a couple of days. I guess considering all of that, he's actually handling things better than might be expected.

But it's more than the schedule issues (or maybe it's just all interrelated?). He's going overboard with being fixated on things and he's adding new "phobias" too.

Everything must revolve around his favorite numbers: 17 and 7. And his favorite colors: pink primarily, followed closely by red and now green. We had to send our Wii to "Japan" for "repairs" because that's all he wanted to do and he could NOT handle having to turn it off. Ever. It was like watching him go through mega-withdrawal every time we had to leave the house or go to bed (or just wanted to take him outside to play, or heaven forbid, give his brothers a turn to play). NOT cool (and I realize it's not fair to his brothers that the Wii has "disappeared" but they are handling the hiatus admirably).

He is increasingly particular about what he will and will not wear (down to minute details). Getting him dressed every day is a drawn-out, agonizing process of finding whatever is going to be acceptable that day (for every. single. item of clothing). It doesn't help that he is outgrowing some of his favorites and wearing holes in many of the ones that still fit. He obsesses over water and is constantly filling up the sink (bathroom, kitchen, whatever) and wanting to play in the water (yet he fusses about having to take a bath). He loves to make "ponds" in our sinks filled with ducks and other bath toys, which would be ok if he didn't try to fill the sink to the brim and then splash water everywhere (and then let the water out, run it again, repeat repeat repeat). One day I even caught him trying to take a "bird bath" in the sink. You can imagine how well it goes over when we inevitably have to put a stop to his water play in the interest of safety and home preservation.

His fear of fireworks and balloons (he's not afraid of the balloons themselves necessarily, but he's terrified of the prospect of one of them popping) has been joined by strong aversion to other sounds. Yesterday it was the sound of a bouncing ball and nerf guns. He was going nuts and kept running to the window at least once every minute to confirm that he did indeed hear basketball bouncing and nerf battles going on outside. At which point he froze and did his little "shiver." We kept the window closed but I guess he could hear it still (I couldn't but I guess his hearing is better than mine).

Often he doesn't want to leave the house, to go to school, church, or even Chick-fil-A or the park. Last weekend we took the family to the park and Bitty spent the entire time in the car. Dh went with Bearhug and Cuddlebug to ride scooters around the park (yes dh rode too, he borrowed Bitty's scooter, lol). I waited outside the car for a while, thinking he'd warm up to the idea and we'd eventually be able to make our way to the playground, but he never did and I got tired of standing around in the parking lot so I finally got back into the car with him. He seemed really stressed out by the whole thing. I know it's been a colder-than-usual winter but seriously he's going to have to get used to playing outside again!

Like many kids on the spectrum, he seems to hold it together reasonably well at school but then he lets loose with all his frustration and anxiety at home. I totally get that, really I do. Home is his safe place where it is ok to let that stuff out. I also understand the desire to stick to what is familiar and comfortable.

Sigh. Honestly, I have no problem accommodating his "quirks" whenever it is reasonably possible to do so. We all have personal preferences and taking the time to recognize and meet those when we can is one way to show our loved ones that we care about them. We want him to feel the sense of security that comes with sticking to the familiar. On the other hand though, learning to deal with the unexpected, or with disappointment, is an important life skill. So we do "force" compromises on his part sometimes also, and we try to push the boundaries of his "comfort zone" without going overboard, because that's the only way to expand the range of what's in the comfort zone. As with most things, it's a balancing act.

He just seems to be increasingly rigid lately in his willingness to accept alternatives for his preferred items / activities. And it's getting harder and harder to keep up with the growing number of things that find great importance attached to them. Suggestions welcome.

~~~~~~~~~~~~~

So ok, now that I got that out of my system, I'll move on to something more uplifting.

Just this weekend alone, in the midst of all the stress, we've had two small yet powerful reminders of Heavenly Father's love and I want to share that too.

Yesterday at church, Bitty wasn't up for the children's Sharing Time and kept telling me "Primary iss cwosed. You can't go Primary." (anything he wants no part of is either "closed" or he requests that we "take it back to da store!"). After a rough day prior and more of the same that morning, I wasn't in a mood to argue with him so I took him to get some Scriptures (he loves to look at them, especially the pictures in the back). They put numbers on all the library copies of the Scriptures to help keep track of them. You should have seen his smile when he saw the number on his... #17 :). I took that as a personal "I love you" straight from Heavenly Father to my Bitty.

Another one Saturday, we took the boys out for lunch and had gone out of our way to go to a place that is usually quiet and uncrowded (it's a bit off the beaten path). They have those little machines by the door that you put in 50 cents and get a ball or a gumball or a little play-dollar with Spongebob on it. Bitty wanted the Spongebob dollar but we knew it wouldn't last the day so we steered him to the little bouncy balls instead. Big mistake. The closest thing they had to pink was a red ball, but obviously you don't get to pick, you just have to take whatever comes out.

His was orange.

If you noticed a large mushroom cloud in the distance early Saturday evening, that was Bitty freaking out when he saw the orange ball.

And just our luck, for once the place was crowded. And you couldn't help but notice a little guy screaming at the top of his lungs. "Put it baaaaack!!! NOT DA OOOOOWWWWAAAAANNGGGGEEEE!!!!! DA RRRREEEEEEDDDD OOONNNNEEE!!!!!!!"

Long story short, after several trips to the car (dh and I took turns) to give him time to collect himself, we agreed to let him try one more time.

Knowing that all heck was going to break loose if he got another "wrong" color, but also knowing that he would not be able to stop fixating on the ball and eat if we didn't at least try, we held our breath and waited to see what would come out. I was praying for a miracle and I'm sure dh was too.

Red. Whew!

It truly felt like a "Hallelujah" moment and I said a little prayer of thanks in my mind. Dh and I looked at each other in relief.

All was right with the world again, at least until a few minutes later when he saw that the toast we ordered had been sliced in half (this particular place usually doesn't cut their toast, so he's used to it being all in one piece). "Iss cwacked! Iss bwoken!!!" The offending toast was about to become a raging projectile, but thankfully one piece had been left intact, so we were able to make a swap and diffuse the situation without anyone being pegged in the head with flying toast. Another sigh of relief from a grateful Mama (and Dada).

~~~~~~~~~~~~~

Are not five sparrows sold for two farthings, and not one of them is forgotten before God? But even the very hairs of your head are all numbered. Fear not therefore: ye are of more value than many sparrows.
~Luke 12:6-7

The Lord hath appeared of old unto me, saying, Yea, I have loved thee with an everlasting love: therefore with lovingkindness have I drawn thee.
~Jeremiah 31:3






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Update on Bearhug (part 1)

So, last month we had Bearhug's appointment with a psychiatrist. We drove almost an hour away to see one who specializes in seeing children on the spectrum. I've kind of debated with myself how much to share here, but how many hours have I spent scouring the internet hoping to find a similar story to ours, in search of some answers? I don't have any answers to offer yet, but here goes...

We felt a little awkward going to the appointment, since we scheduled it back in November in the midst of some very difficult times for Bearhug. Since then, he'd been doing better, minus one big blowout in mid-January. But since it took so long to get in, we wanted to keep the appointment, figuring that if he started to have a rough time again it would hopefully be easier to get in for a follow-up without having to wait another three months.

I'm soo glad that we did.

The appointment went well. She talked to Bearhug for a while before inviting him to play with the toys in her office while she spoke with us. She started out with basic questions, and I had to laugh when he answered a question about his siblings with this:

"'Cuddlebug' says he was born ten minutes earlier, but I'm stronger!" lol (Cuddlebug was actually born two minutes earlier, not ten, but who's counting?).

After a few minutes of chit-chat, he asked her, "are we going to talk about why I'm here?" We had talked to him beforehand about what kind of doctor she is and why we were taking him to see her. I think he is as much hoping for some answers and help with these problems as we are.

I was really impressed with his ability to articulate the experiences from his perspective. He described how he feels so angry that he just "goes nuts" and "runs to get away" or "attacks people."

At one point she asked him if he's ever thought about killing himself. He said yes, and my heart broke for him. He is only 8 years old. She asked if he's ever tried to do anything about those thoughts, and he said yes again. I admit I was stunned to hear that, I wanted to cry but I needed to stay calm so that he would continue to answer her questions honestly and not feel that he'd said anything wrong. She asked what he had done, and he told her he hit himself in the head and banged his head against the wall. I've seen him do that, but had no idea that he had that intent behind it (at least some of the time apparently).

She recommended scheduling to meet with a psychologist closer to home on a more regular basis for talking / play therapy.

She ordered some blood work to see if there are any biological issues (blood sugar, vitamin deficiencies, whatever) that might need to be addressed (and I think also to get a baseline of his blood levels in the event that we may need to look at trying medication). She also suggested taking him to a neurologist to rule out seizures or other neurological issues.

We saw the neurologist about a week later. He suggested that these are "rage attacks" but ordered an EEG in case there is also some seizure activity. Bearhug has mentioned that he can feel these "episodes" coming on just before they happen, so they asked what that feels like. He said he feels a pain in his arm, that moves to his shoulder, and then it starts. We are trying to work with him on letting someone (us or a teacher if he's at school) know if he feels like that so we can try to help him calm down or at least get somewhere where it's safe to blow off steam if needed before things get out of control. Not that we've been particularly successful with that yet, but we ARE working on it...






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Homework blues

Bearhug and Cuddlebug do their fair share of complaining about homework. And sometimes they drag their feet and take FOREVER getting it done when they could have finished it in 10 minutes had they just put a little focus on it.

But that is nothing, NOTHING compared to Bitty's response to homework.

What homework, you ask? After all, he is only four years old. How much difficult homework could they be giving him to do?

Well, thankfully, it's rare. As in, maybe once every couple of months or so. No big deal, right? And, it's easy stuff. Perfectly appropriate for a 4-yr-old. They send home a short book to read with his family, and a coloring / activity page that goes with it. That's it.

That's IT.

He brought home such an assignment a couple of weeks ago. The book was "The Mitten," by Jan Brett. He was ok with reading the book (only minimal whining). But you would have thought we were asking for a dissertation when it came time to do the coloring page. All he had to do was color a picture of a mitten.

He doesn't really do "coloring" so we would have been fine with just a few scribbles of an attempt to color the mitten.

That's it. That's all he had to do.

After much wailing in protest, he finally did it. I thought he did pretty good:



So, end of story. Right? Ha! I wish.

Oh no, he was just getting started. So upset was he that he had to color the mitten in the first place, that he wanted to erase it.

Well, you can't erase crayon and I knew he'd rip the page up trying, so I said no.

He grabbed his paper and headed to the sink, attempting to erase it with a sponge.

Lucky for me, the sponge was dry.

I took the paper from him, put it away so it would still be intact to send his teacher the next day, and tried to redirect him to something else.

Hahaha. This is Stubborn-and-Persistent-to-the-point-of-Obsession Bitty we're talking about here. There was no redirecting him. The screaming commenced when I refused to hand over his paper for erasement (is that a word?). I put it on top of the fridge, he started climbing up on the counter to reach it. I put it up on the top shelf of the closet, he pulled a chair over and tried to get it down (but couldn't reach). Exasperated, I carried him (kicking and screaming) upstairs hoping the paper would be "out of sight, out of mind."

Hahaha. I did mention, Stubborn-and-Persistent-to-the-point-of-Obsession, right?

It was an all-out meltdown. Screaming at the top of his lungs, tears of anguish running down his cheeks. "Aw duh-wi-da up?" he pleaded. (all done with the up, meaning can his paper come down now). Afraid that he would tear it up and not wanting to send in his homework in shreds, I held my ground. "Sorry, Baby, but no." More screaming and thrashing. This went on for over an hour, until he finally wore himself out and fell asleep.

Seriously, all this over an easy, five-minute assignment.

I am so NOT looking forward to when he starts getting regular homework assignments. :/

Although, now that I'm thinking about it, last time he had homework the meltdown was over reading the book, and this time he at least did that part. So... that's improvement. Maybe there's hope after all ;).

In hindsight, maybe I should have just taken my chances and given him the paper. Would it be the end of the world if he tore it up? No, but we've been through this enough times to know that it wouldn't stop there. And even though his teacher would not have minded if he didn't turn it in (I think technically these are optional assignments at this age), learning to do homework is important so when he starts getting assignments that are not optional he'll already understand what is expected and have a "routine" established for what to do when he has homework (preferably, a routine that does NOT involve a meltdown).

Update: for what it's worth, this was written (just not posted) a few weeks ago, and since then he had another assignment which he did without going ballistic. So maybe we can chalk one up for Mama and Dada in this case. Or maybe we just got lucky that time... time will tell ;).





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Anyone need their floors mopped?

Bitty is your man, as long as you don't mind puddles all over the floor. We have one of those Swiffer Wet-Jets that spray and then you mop. He LOVES the spray.

He got the idea from one of his books (he likes to act out scenes from his books, not entire sequences but one little snippet repeated over and over and over). This time, it was a mopping scene.

He grabbed the mop from the closet and went to work. At first, I was happy to let him. Who am I to argue with a child who wants to mop?

But as I heard him spraying over and over, and realized he was going to use up the entire bottle of cleaning spray if I didn't put a stop to it, I told him "Good job, 'Bitty,' all done with the mop." He ignored me and kept on, leaving big puddles in his wake as he was more interested in spraying than actually mopping up.

I took the mop away.

He went ballistic.

I had to hide the mop in the garage to keep it away from him. And then stand guard by the door to the garage while he raged on about the mop and tried to forcibly move me away from the door. No attempts to redirect worked. He eventually started to settle down and I went on to other things. As soon as he figured the coast was clear, he snuck into the garage and the next thing I knew, there's that spraying sound again!

Bitty - 1, Mama - 0

I put the mop outside on the back porch. He can't open that door so I didn't have to stand guard. He went ballistic again.

After a while, seeing that I was not going to give in, he came up with Plan B.

Plan B involved throwing his sippy cup around the kitchen in an attempt to leave little drops of chocolate milk all over the floor.

Little drops that would need to be... wait for it... mopped up.

Which would force me to bring the mop back in, right?

Ah, I'm impressed with your logic, Bitty. Impressed, but not fooled ;).

Instead of going for the mop, I grabbed a paper towel and started wiping up the spilled milk. (Well, first I tried to get HIM to wipe it up but you can imagine how that went over *snort*)

Oh, he was not impressed. He grabbed my hands trying to force me to stop, shouting, "No NA-KIN, NOOOO NA-KIIIIIINN!" (no napkin).

The mop spent the night outside. As I type this, it has been brought back in but is hiding in the garage. Add this to the list of chores that must be done when Bitty is either at school or asleep (also on the list - laundry because he is forever turning the washer off mid-wash).

I know his mile-wide stubborn streak came from ME, so I guess I have no one to blame but myself... But at least that makes me a somewhat even match for his stubborn self, right? (Oh, who am I kidding?) ;).





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Still here... and an update

I feel like I've kind of gone AWOL from the blogosphere for a couple of weeks, but I wanted to say thank you for your kind words, suggestions, and encouragement in response to my last post.

Bearhug is still struggling and we have no idea why. It feels like we are in new territory here... at first I thought it was a result of sensory overload / stress but now I'm thinking it may be more than that.

Whatever it is, it has really escalated in the last few weeks. We're seeing a lot of anger, rage would be a better description really. Aside from that he seems kind of sullen, even sad. I spoke with his resource teacher and the parapros that work with her, they're seeing similar things at school. He had a pretty intense outburst at school this past week.

Sundays are the worst. Two weeks in a row he took off running at church and went missing. We found him hiding in the bathroom both times, but talk about stress! The first time I was fighting panic, not sure if he was even still in the building or not. Several people helped me look (dh was teaching a class and didn't know about all this until after Bearhug was found), and he finally turned up in the bathroom. He had his feet up so no one would see him and wasn't answering when we called out to him, but the second time someone checked, they spotted his shirt through the crack in the stall (Bearhug later said he hadn't had time to cover up the cracks with toilet paper... ugh).

The second time at least we knew to check the bathrooms and sure enough that's where he was again. Once he was found, he refused to come out and instead stayed in there screaming at the top of his lungs. We've tried to accommodate him by taking turns taking him outside for walks, but it doesn't seem to be enough.

His teacher said he has made comments about feeling worthless, and since then he has made a couple of similar comments at home. She suspected it might be the influence of the "Diary of a Wimpy Kid" books, which he really seems to be taking way too seriously. He admitted that sometimes those books make him feel bad - and although I don't really think the books are the cause of the problem it's possible they were making it worse, so we took them away for now. They're supposed to be funny (I read the first one and actually thought it was cute... but what do I know?).

Some of his behavior seems to have an attention-seeking element to it (he'll do something he KNOWS he's not supposed to do and look around to see if anyone notices), but giving him extra attention (not rewarding the bad behavior, but going the extra mile to give him praise, etc. when he's doing good) doesn't really seem to be helping. In fact, today when I told him I was proud of him for his grades at school this week (after looking through his weekly folder), he got upset with me.

Yesterday, he really scared us when he took off running and hid in the neighborhood. It's the first time he's done anything like that before. I mean, we had to watch him like a hawk when he was younger because he would run off but it was different... he was usually intrigued by something or he just wanted to run, he wasn't necessarily trying to get away from us. Yesterday, that's precisely what he was doing, and it was dark outside and I'm not sure even now he really understands how dangerous it was to do that.

He was coming home from playing with his friends (two doors down across the street) and I asked him if he was hungry. Dh told him I had ordered pizza and asked if he wanted some. He lunged at dh and then took off running past our house. I heard him banging on the back door and went to open it, and by the time I got the door open he was nowhere to be seen. I thought he was just messing with me and went back to the front door, but dh (who was across the street) said he hadn't come back around and thought he'd gone into the house. At that point we had no idea where he was, but it was getting dark. There's a bunch of trees behind our house and I was worried he'd gone in there. Dh grabbed a flashlight and went to look for him while I stayed with Cuddlebug and Bitty. I watched for him out the door. The boys he'd been playing with helped look for him, and dh was about to round up the neighbors to help too, when they spotted him. He'd been hiding behind one of the houses nearby :(. He was clearly upset, resisting coming into the house and trying to run away again. When he came in, he ran up the stairs, hid under his blanket, and was crying, refusing to talk to us. We finally convinced him to eat dinner, and then he seemed to feel a little better, but a while later he was upset again and tried to run outside again. Luckily he wasn't trying too hard, and I was able to keep him inside without a huge blowout.

A while after that, he was complaining of nausea and dizziness and wanted all the lights out. He said he'd been "exercising" trying to get "those things in your stomach, I can't remember what they're called," (turns out he was talking about "abs") pretty much the entire time he'd been playing that day. I think he overdid it and actually made himself sick. It almost seemed like a migraine but he didn't say his head hurt other than feeling dizzy ("it feels like I'm moving but I'm not").

The only answer we could get from him - then and even today - was that he didn't like the questions we asked him. What horrifying questions did we dare to ask? The ones about "are you hungry" and "do you want some of the pizza your mom ordered?" Maybe he wasn't feeling well from overdoing it and something that simple was all it took to set him off. I don't know.

I am really at a loss here. It is heartbreaking to see him going through this and not knowing what "this" is, or how to help him. The bad days are exhausting - emotionally and physically - and the good days it feels like we are walking on eggshells trying to keep the peace. Every time he has a couple of good days in a row I start thinking maybe things are looking up only to get socked in the gut with a day like yesterday.

Someone mentioned hormones, and it sounds strange but I've done some reading and apparently pre-puberty hormone changes can have a significant impact on children with autism, as early as 7-9 yrs old. Maybe that's at least part of it, I honestly don't know. He is having mood swings like we haven't seen before.

He was cranky today... but this evening he seemed to be feeling a little better. He let me sit with him and we read some books together. It was nice :).

We have a checkup scheduled for him and Cuddlebug a week from tomorrow, maybe his doctor will have some ideas. His resource teacher has been really helpful, she is awesome. She's been working with him since Kindergarten so she knows this is not like him.

I'm open for suggestions... and if you're inclined to pray, a little extra prayer for Bearhug would be greatly appreciated.





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