Sunday, November 8, 2009

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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K on November 9, 2009 at 8:06 AM said...

OMG Hugs darling I can just feel the stress in your post
Many many many hugs
I am saying a big prayer for Bear hug and hope peace and serenity wraps him up in a big bearhug
So so so sorry - its the worst seeing our kiddos in pain
When R gets stimmy I feel I will just die from feeling bad about it
And its also tougher in some ways when they are grown up
a 3 year old having sulks or a meltdown is one thing and even if its the exact same thing it looks different in a 6 or 7 year old

Anonymous said...

Specifically added to my prayerlist.

You and dh are stalwart in managing the bad days. You might feel a little better if you set a short term expectation that the ups/downs will remain for one more week. A 'batten down the hatches' attitude for one week could help you feel less helpless. More and tighter structure helps rule-out reasons for his behavior. (Reducing the questions you ask yourselves.)

An assessment by a physician is a next best resort to solving his current issue. Can you change the appt from joint to just for BH (resched for CH later)?

Believing that prayer and having a plan help - that's what I offer.

Online Printing Company on November 9, 2009 at 8:09 PM said...

Our prayers are with him. I hope that everything will be okay soon. I know it will be. Just hang in there.

Anonymous said...

Oh, Danette. I don't really know of anything helpful to say. You will all be in my prayers and I hope you find some answers soon. ((HUGS))

On a sort of side note, I've noticed that Daniel takes some movies and things too literally. Some illustrations in books or parts of movies that are supposed to be ridiculous and funny are more dangerous for him to see and try to imitate and he doesn't understand that. Seemingly innocent things are being added to our "banned" list because of that...

Anonymous said...

Julie's comment made me think of something - the literal interpretation of language. Very worth exploring as a source for him being upset.

Last night I read a post by John Elder Robison - if you have not read his blog before, it might interest you. He is an adult with Asperber's S.

Thinking of you. Barbara

Patty O. on November 11, 2009 at 7:36 PM said...

Wow, this sounds so hard and complicated. I will definitely start praying for you guys! It is so hard, especially when they can't really explain how they are feeling. And it sounds like what he is feeling is pretty complicated and hard for him to identify, which does sound a bit like hormones and puberty. I know I felt that way often (and still do sometimes when I am PMSing).

My only piece of advice it pray. That has been something that has helped us the most when things have gone crazy with Danny. Otherwise, hopefully your doctor will be able to help.

Oh, one idea: perhaps you could keep a journal and try to see any patterns with foods, or other triggers. I know that is probably the last thing you have time for, but it could help. Good luck!


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I'm a mom of three boys on the autism spectrum, 11-yr-old identical twins and a 7-yr-old. My husband is a SAHD.


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