Arm Biting

One of Janey's most consistent challenging behaviors is her biting of her own arm.  It's always her right upper arm.  She raises it to her month and bites the same spot.  It happens any time she is upset, and many times when she's not really upset, but overexcited or wound up in other ways.  The bite varies a lot in strength.  It can range from almost more like sign language with no real biting at all to actually biting down very hard on her skin.  She almost never breaks the skin, but she bites hard enough so she has a permanent hard area of callus where the teeth hit her arm.

The biting started quite suddenly when Janey was around eight.  One Friday, she came home from school with a bruised area on her upper right arm.  We had no idea what it was from until she got upset that weekend and started biting herself right where the bruise was.  From that point on, it's happened at least once a week, sometimes once a day, or hour, or in the worst times, a minute.

I think the biting is sometimes a release, a way to let off tension, and it's sometimes a way to communicate anger or annoyance at us.  When it's mild, I can see just ignoring it or using it as a starting point for discussion---"You are biting your arm.  Do you feel angry?"  However, when it's more severe, it truly hurts her.  This past weekend, when she was crying, I asked her if something hurt, and she said "Does your arm hurt?"  When I asked her to point at the hurty place, she pointed right at the biting area.  It made me feel a huge wave of sadness, thinking about her causing herself pain.

I have very few ideas for stopping the biting.  We've tried a lot of things---an ace bandage over that part of her arm, calling her attention to the biting and asking her to stop each time we see it, behavior plans here and at school, any number of millions of different bite toys, chewable jewelry, fidget toys, even bite-able toys meant for dogs.  Nothing stops the biting.  It seems like part of the whole routine for her is feeling the teeth on her skin.

Why does Janey bite her arm?  I have some theories.  One is that she learned she couldn't bite other people.  It's sad to think she then turned to herself.  If she feels angry enough to bite, and she knows biting other people will cause a big huge scene she wants to avoid, she bites herself.  In thinking about that, I've tried a few times making a big scene when she bites herself, but that hasn't seem to work at all.  Another theory is that the biting has become a habit, like nail biting or hair twirling or something.  But it doesn't happen when she's just bored or doing nothing else.  I've never seen her bite when she wasn't at least a little upset.

Searching the good old internet for ideas about biting is as often not that useful.  It so often seems everyone giving advice goes to their own corner and gives advice based on their own theories.  And often, the "expert" advice seems to assume that the parents have never tried a thing.  Ignoring her?  Figuring out the cause of the biting?  Giving her something else to bite?  Gee---neither her school or us have ever thought of anything like THAT!  It's very frustrating.

A problem with the biting beyond it hurting Janey is that it seems like self-injurious behavior is where a lot of programs draw the line at working with kids.  It's one of the most common questions I've seen on screening-out type applications.  And I can understand that.  It's a scary, awful thing to see at its worse, and I am sure sometimes there's also a worry that we as parents will think that Janey was somehow hurt by someone other than herself.  But it leads to more isolation.

Like with so many other areas of autism, we just keep doing what we can do about the arm biting.  We cobble together various ideas.  We try to keep her happy, which is the best way to keep her from biting.  We talk to her about it, and hope she understands some of what we are saying.  We work hard to calm her when she's upset or overexcited.  And we offer our ears, ideas and thoughts to anyone else dealing with seeing a child they so love hurt themselves.

Autism and Toys --- Some Thoughts

I've written before about how hard it is to find toys that engage Janey. It's something that has frustrated me for years. She has little interest in most toys, and is unable to use others, due to the difficulty of operating them or the small and dangerous pieces she might put in her mouth, or just due to her love of tossing things all over the floor and losing them. We are left with few toys that work for her, and this is upsetting to me, as I am a big believer in toys and how important they are for kids. I've figured out a few things that work for us over the years, and here are a few ideas...

1. Fidget toys. These are usually things actually designed for people to have at their desks in offices, and to play around with as a way to fidget. Not all of these are at all suitable, of course, like things with magnets or breakable ones, but lots are---mushy figures you can push in, Tangles that can be turned in all directions, Kushie type toys, toys with water inside you can move from side to side to see the waves move, things like that. I have gotten a lot of these from office supply sites.

2. Baby toys. I used to resist these, wanting Janey to have "age-appropriate" toys, but lately I've kind of given up on that. Baby toys are pretty cool these days! They have all kinds of textures, they often make noise or play music, they are non-breakable and can't be eaten---in a lot of ways, they are perfect for Janey. She is most interested in electronic ones, like V-Tech or LeapFrog toys, and I've had good luck finding them used.

3. Water toys. Janey, like so many kids with autism, loves water. She loves being in the bath or the wading pool or any kind of swimming. Anything that can stand water is a great toy for her. She loves to toss things in water and see what happens, so it's great to find toys that allow that.

4. Balls. Janey loves to kick or throw balls. She is getting better at it! I try to find balls that are safe for the house somewhat, so she can use them all year round.

5. Stuffed Animals. This is a new category for Janey, because I have a new approach to them. I'd never buy one new unless it was a very special circumstance, but at the thrift store I like, they sell big bags stuffed VERY full of assorted stuffed animals, for usually $4. They have about 15 toys in them! I take these in the car, and hand one to Janey at the beginning of almost every drive. She likes holding them, feeling the textures and exploring them, and every now and then she finds one she gets attached to, like recently a monkey and an elephant. I think of them as disposable, as it's impossible to keep her from sometimes wrecking them or losing them, but at that price, it's okay.

6. Bubbles. Janey has learned how to blow bubbles herself, although you have to watch her pretty carefully so she doesn't spill the whole jar of them the minute she picks them up. She also loves bubbles blown for her.

There are some toys you always see in lists of "Best Toys for Autism" that just don't cut it for Janey. A lot of these are toys that are for higher functioning kids with autism, like Geosafari toys or complicated train sets. Puzzles don't work well, just because she will so often toss the pieces, and I don't have the organizational skills to keep track of them well. Playdoh WOULD be great, as she loves it, but she loves to eat it as much as play with it, and although we've given it second and third and fourth chances, she can't resist. Although I think she likes to draw and paint at school, at home, she doesn't seem to care for it. And she has never shown much interest at all in dolls, which is probably one of my biggest areas of sadness about her. It's my dream, not hers, to have a daughter that loved dolls as I did.

Of course, one of her favorite "toys" is her iPad, but that's a different category I'll write about soon!

Toys

I love toy stores, and I love getting interesting toys for my kids. However, I've found over the years that the toys I like to get are not always the toys the kids like to play with. I've bought about a million blocks since I've been a parent, and they have barely been touched. I've bought several beginner baby video game type systems for Janey, all of which overwhelm her. I've gotten her many dolls, most of which end up as chew toys. William was the easiest to buy for---anything Thomas the Tank Engine or Brio got heavy, heavy use. Freddy always preferred electronic entertainment. Janey---well, it's very hard to get her interested in a toy at all.

What has worked? The best kind of toys for her seem to be what are called fidget toys. They are ones you can hold and move around in your hands---things like squshy balls, Tangles, stress balls, textured baby type toys, things like that. She also likes musical toys---ones with buttons to push to play music. She has always been interested in Play-Doh, and I'd very much love to get her everything Play-Doh that exists, but she eats it, always. Yesterday was a little bit of a breakthrough in that she found some I had hidden and actually played with it for about 15 minutes without putting it in her mouth at all, so maybe that is getting better. She rolled it into a log and a ball, making me very happy. Lately also she likes pouring water or beans or something from one container into another.

The thing that's hard to do is not think age-appropriate, but much lower than her chronological ages. It's so tempting to me to get her things I would like her to like, like Polly Pockets or Barbies or dollhouses. I have to tell myself that she might like them some day, maybe even into her teens or twenties, but right now, the best kind of toy for her is probably aimed at about a 1 year old, and there are lots of neat toys out there for that age.

I've searched a lot for web resources for autistic kids and toys. As I often find, most are aimed at higher functioning kids than Janey. Lots of Thomas, lots of games that she would in no way understand. It seems like someone recommends a toy for autistic kids, and then that just gets copied by everyone, whether most autistic kids would like it or not. I'd love it if there were a site just for lower functioning kids with autism, with toys they can't choke on, that will actually hold their interest. I see some great things sometimes in school or therapy catalogs, but they are priced for those kind of budgets, not mine. Another cool thing I'd like is if some autism agency would lend good toys, like a toy library for autism. I'd be happy to pay a monthly fee to have access to some of the great toys I can't afford. It would be another of those services that would help people like Janey much, much more than another grant for research.

Meanwhile, I'll just continue limping along getting the occasional toy that's a hit with her. I think toys are a huge, huge part of childhood, and it's one of my biggest frustrations about autism parenting---that there is so little to give her that will engage and interest her.

Two weeks until six

Janey will be six two weeks from today. Birthdays always bring up a nest of feelings. Every year, I think to myself "Maybe next year she'll know what a birthday is, look forward to it, get excited about it". I think this year I'll stop thinking that. I get with her like people get about getting older---I don't want her to get to be older, because that's just putting her further from where she "should" be mentally. That's a bad thought, but a truthful one.

Presents are another nest of bees. She already got one present, from the very wonderful lady who has volunteered to work with her this summer. It was so nice---a fairy wand that is perfect for her, and wooden bears you can change the expressions of. And of course Janey had the typical gift reaction---freaking out, screaming, throwing it around. And the woman was hurt, despite trying not to be. And I was mortified. And of course within an hour, the fairy wand was her favorite thing ever---she's loved it right to death already. But presents are tough---they aren't expected, they require a reaction she doesn't understand, they are nightmares for her in some ways. As would be a typical birthday party. And that's fine---for her. For me, it's harder. I still hold onto the dream of giving her a little girl party, with some special presents that she will be thrilled about. I dream of getting the American Girl catalog and going through it with her page by page, talking about what we would order if we could, and maybe picking out a few special thing to get, and some Christmas blowing all my money and buying her a doll and furniture and it being something she remembers always....and it's never going to happen. And I need to get over that.

I ordered her presents from a web site I should give a shout-out to, for other parents of autistic kids. It's officeplayground.com They are aimed at little toys for use in offices, but they realize a lot of the same toys work for autistic people. They have all kinds of "fidget" toys, things you can play around with using your hands, like stress balls, Tangles, those toys with water inside that looks like waves, etc. Their prices were good and I ordered her about 10 little toys. I hope she likes them. It felt like a realization. I didn't try to get her typical 6 year old toys, because that's what I wanted to get. I tried to get her something she'd love. I need to do that with as many aspects of her life as I can. She fights such an uphill battle just fitting into this world; I don't need to add to it.

Her birthday is also Freddy's birthday---he will be 13. Maybe that all was arranged somehow---that I'd have another birthday the same day. Who knows? Freddy wishes he had his own day! He's ready to be a teenager---he's been one for a while. It makes both their birthdays very special to me. I'm so lucky to have them both, and their brother William.


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