Tuesday, June 4, 2013

Biting despair

Janey developed a new habit about a month ago.  She bites her upper arms when she is angry---mostly the right one, but now sometimes the left too.  It's a horrifying habit.  Her arms are constantly red or bruised, she hurts herself to the point where she is crying for a band-aid, and there seems to be no way on earth to stop her.  

She started it at school during a tough week.  Tony and I saw her badly bruised arm and just didn't know what was up.  I never thought anyone at school was hurting her, because I know they wouldn't, but I thought she might have smashed up against something at school.  I could tell the bruise wasn't from being grabbed or pulled by another kid, because it was only on one side of her arm.  Finally, after a few days over a weekend trying hard to figure it out, Janey got mad and did the biting at home.  It was a little bit of a relief to know what was causing the bruises, but that was quickly followed by a complete lack of ways to prevent it.

For a few weeks, Janey was biting less and we hoped the behavior was just ending.  However, this past week has been very rough.  We've had the sleeping problems, and Janey has seemed endlessly irritable.  And the biting is back---big time.  Now it seems to be the first thing she does when we say no about anything.  She asks to go get ice cream at 2 in the morning, we say no, it's the middle of the night, and she bites herself.  We've tried everything we can think of.  We've held her hands, which works only if we can get to her in time, we've tried putting on an ace bandage so she can't bite as well---she takes it right off.  I bought her hand core biting toys---actually dog toys, because I don't think the average Chewelry or whatever it's called works for SERIOUS biters like Janey.  She just bites them up.  The dog pretzel will hold up to her, and she does like biting it, but it doesn't replace the arm biting.  Somethings seems to compel her to hurt herself, and it's killing me.

Today, when talking to her teachers about strategies we could try, they told me she has also started to bite them now and then.  This is something she's done once in a while at home too.  It's usually done when she is hugging.  She puts her mouth against my chest and then suddenly seems to have an impulse to bite down.  It's hugely painful.  I come down very hard on this---screaming at her as loudly as I can, to startle her and let her know it's completely unacceptable, and this seems to have decreased her doing it at home to once in a long, long while.  But all bets are off right now, with this current trend.  

I worry about biting so much.  I know if she starts biting the kids in her class, that could be something that the school would get pressure to remove her for.  They wouldn't want to---the wonderful aide in Janey's room actually said if they would give Janey a one-on-one aide for the summer, she would be that aide, after having been bitten even, but in talking to the special ed team leader, who does Janey's IEPs, I found out it would be very hard to get that aide at this point.  The leader said that the summer school staff would be well trained to handle biting (in the summer, Janey is with all autistic kids).  I hope that is the case.  She is going to speak to the ABA supervisor for more ideas.  Mr. Ken, Janey's ABA therapist, has been very on top of this too, and called me yesterday to talk about strategies.  Everyone is working on this, but in the end, no-one can really keep Janey from biting.  We have to make her want to stop, and I just don't know how.

In my new resolve to assume Janey understands what is said to her, I've talked to her a lot about the biting.  I've told her I understand she gets angry or scared feelings, and she knows most of the time she shouldn't bite other people, but that she absolutely shouldn't bite herself either---that biting hurts her, that it makes things worse, that it scares me, that it will make her have a painful place on her arm for a long time, that she needs to stop, that we will do whatever we can to help her stop.  She doesn't act like she is listening, but I hope she is.

I've been thinking about the autism acceptance movement.  I believe in a lot of the parts of it.  I do accept Janey, but there is no way on earth I can accept her hurting herself.  I can't see autism as a positive when it leads to that kind of horror.  I wonder how that fits into that philosophy.  I'm struggling to see how in the world acceptance can stop behaviors like this.  I guess if I could explain to her that I accept her anger and frustration, but not the biting, that would be one way, and I hope I am explaining that to her.  But she has almost zero impulse control.  Even if somehow she is understanding that, when the urge to bite hits, I am pretty sure she isn't thinking about anything but her anger and how she wants to bite herself to deal with it.

I have to admit this has me in a bit of despair.  If anyone has dealt with this, and/or has ideas, I'd love to hear them.  If you don't, thanks for being there just to listen.

5 comments:

mknecht24 said...

Honestly, based on our recent experience, I'd consult with a pediatric neurologist. Something may be happening in her brain causing her to act out. She is heading into puberty, and the hormone shift will affect her brain chemistry. Lindsey's neurologist was very helpful. I have doubts that Janey can control this behavior on her own. Same with Lindsey when she is banging her head on concrete. She cannot stop without intervention. I will ask some people here for advice as well. Someone, somewhere will have a solution for you.

Sophie's Trains said...

I am sorry to hear that. Sophie does bite too :( but given her age I've been treating it as a toddler-thing so far. It is distressing you are right. She does it also when frustrated and when we tell her "no". I see few things going on with Sophie- she gets frustrated and smacks me and when I don't react bites (its harder not to react to a bite!). If I don't react to a bite, she smacks the baby instead. So basically her ultimate motive is to get a reaction. And getting what she wants of course
Of course I am no expert in any way and you should follow the guidance of the people who you know and trust. But the way I see Sophie is a girl with limited ways of expressing herself being frustrated. Her means of self-control are minimal at best. She wants to make us see she is mad, like all kids. She can't scream "but I wanna!! Give it to me!! Its not fair!!" So she bites she kicks. The only thing that works with Sophie is anticipation of her getting frustrated, prevention at best and basically watching her like a hawk especially around other kids. Looking and knowing her "pre-biting" signs. And I do talk to her, explain in simple terms "biting hurts. We don't hurt others". It is hard. I hope you find something that will work.

Julie Vasku said...

Hello

I am a recent reader of your blog and I think you are absolutely fantastic in putting your feelings into words as I so so so much understand what you feel...I think you are a marvellous mother. (I am from Europe, so sorry for my English (I am not a native speaker))
... I have a 6-year old autistic girl. Recently, we have started a new therapeutic approach with a new therapist, there were a lot of things that she actually recommended - among those was to "NAME" the feelings my daughter has. I mean, when she was angry and started to bite herself, I always caught her hand and had to say st like "I see, you are SOOOOO ANGRY, because you can't have (whatever)...", i.e. to somehow verbalize her feelings...I thought this was useless as my daughter wasn't able to speak at that point, but quite surprisingly, it really helped... I think Sophie has really very limited possibilities of expressing herself, but at the same time, she needs to be understood. And by using the language (tone of the voice, etc.) you may give her a clue what is actually happening (Zita started to bite herself always when being angry or tired or frustrated)... I was very much thinking about avoiding the frustration (giving her what she wants) but it didn't help much... just the sense of being understood by other people may be comforting for Sophie.... I don't know, I mean each child is different, this is just what helped my daughter... I wish so much you will find something that helps your daughter... Julie

Suzanne said...

Thanks to all three of you for your ideas and support. We are seeing Janey's pediatrician next week and I am going to ask him to refer us to a neurologist. I think it's very possible thee is something neurologically related going on---this change of behavior has been so sudden and severe. Janey's biting behavior does sound a very lot like Sophie's. Being told "no" is the biggest trigger. She also shows "pre-biting" signs when biting other people---not so much herself. When she is thinking of biting someone else, she literally comes at them sometimes with her mouth open and her teeth showing. It's almost funny if it wasn't scary and sad. Julie, I loved your suggestion of naming the feelings. I've been doing that off and on in a haphazard way, but today I started doing it every time she bit herself or screamed. I'm not always sure what her feelings are or what provoked them, but I usually have a good guess. This morning she was upset when I told her there was no ice cream. I said "You are VERY angry and frustrated that we are out of ice cream!" and she looked at me intensely and with interest, and said back (without reversing her pronouns!) "I am VERY angry and 'rustated!'" It seemed to calm her a little, and I think if I try it consistently, it might be a big help. I also talked to Janey's ABA supervisor today, and they are going to work out a formal plan to work on the biting, which is great. It will feel good to have a plan in place that will be consistent at home and school. I am feeling a little more positive about things today, just from sharing this and from talking to others. It truly helps!

audball said...

Just to add, a friend of mine recently has been going through something similar with her older son. A therapist told her that many kids on the spectrum don't know how to cope with overwhelming "bad" emotions - disappointment, anger, frustration. As Julie said, naming these emotions can help her cope.

I think part of the battle is Janey feels safe with you; so safe that it's possible you see the absolute extreme of these emotions. The therapist told my friend that as hard as it is, staying with her - for no matter how long it takes - and calming her down by helping her articulate her feelings may help. It's hard but it does get easier. Maybe once Janey feels okay and realizes that she can recover from these emotional extremes, the outbursts and the biting may subside. Feeling overwhelming disappointment and anger must be scary for kids who don't know they can "come back" from that.

But hugs to you…I know it's so hard. There's the part of you that wants to be the teacher; the part that wants to be a mom and just make it all better ; and the part of you as the individual that feels that this is just not fair to yourself. All these feelings roiled together make it so hard. Take care of yourself too!

BTW, I don't know if I've suggested it before, but there are some very articulate ASD individuals who write about their feelings on wrong planet. net. I frequent the Parents Discussion board, but I've gotten a lot of insight from the other boards as well - mainly from the POV of individuals with autism. I know these are older folks, but they are so good and describing what we can only imagine our kiddos are going through. You may find some additional help there too...