To all who reached out yesterday – Thank you. The feeling of being overwhelmed that I was experiencing, receded and by the afternoon I was feeling back to my old energetic self. Amazing how something so simple as admitting out loud how you’re feeling can elicit such an outpouring of support which in turn can transform all those feelings into something positive. It made me think about how we – those of us who are caregivers and autistics should have a place where we could go to get support, ask questions, a place where we could come together as a community and just be, with no leaders or hierarchy, just a place anyone who wanted or needed could gather and reach out to like minded people. If such a place exists, please let me know.
Hunter College, here in New York City, is hosting the 12th Annual International Conference in Disability Studies in Education, May 25th – 27th and I will be attending one of the presentations – Autistic and Female: They say That’s Rare, and so many other things – with Elizabeth J. Grace. I am very excited!
The program looks fascinating and if I could, I would have liked to have attended the entire conference. Who knows, perhaps next year I will be able to.
On a separate note, Emma became frustrated yesterday while at school and bit herself. This has been an ongoing issue, one that began when she was at her special-ed ABA based preschool when she was just three. A boy bit her, on three different occasions, causing the skin to break and each time this happened we would get a call from the school telling us that this same child had bitten her, that they were doing everything they could to monitor him, but that while it obviously hurt her, no real harm had been done. Not long after that, Emma began biting herself.
It is horrifying to witness your small child, in such obvious pain, attempting to manage their upset by harming themselves. Emma bites her arm or hand or in extreme cases will punch herself hard in the face. We have used a variety of techniques hoping to stop the behavior, but so far none have worked, though she does not bite herself as much as she once did and rarely punches herself in the face any more.
A few weeks ago I reached out to a couple of Autists I know asking for their suggestions and one had some great ideas about things that might help, such as chewy tubes, which we have bags of and had all but forgotten, and having a favorite stuffed animal with her. I decided to ask Emma whether she would like to have a stuffed animal to take with her to school, and while she declined, she did say she wanted to have two chewy tubes in her backpack. We discussed how when she becomes frustrated she can chew on the chewy tube and Emma nodded and shouted, “I’m so frustrated!” then grabbed the chewy tube I was holding and jammed it into her mouth, gnawing at it furiously. I took her response as a positive sign.
I don’t know if anyone at her school remembered to remind her about her chewy tubes or if in the heat of the moment they were forgotten, but we will continue to remind Emma that the chewy tubes are with her and she can bite them instead of herself.
Telling her, “We do not bite!” or “You may not hurt yourself!” while well meaning and said with good intentions has NOT proven remotely helpful.
To read my latest piece, Emma’s New Shoes, in the Huffington Post, click ‘here‘
And if you haven’t already done so, do vote for Emma’s Hope Book by clicking this ‘link‘ and clicking on the “like” button opposite Emma’s Hope Book.
Emma's Hope Book 
I will pray the chewie tubes will help her. It would be very difficult to see her hurting herself . 😦 While Brett hasn’t experienced any self injurious behaviors..yet…there is always a chance it will come, he does have sad sad meltdowns… which aren’t like he is naughty having a meltdown, he just begins to cry. Cry big, sad, sobbing tears and he just can’t calm himself. He can get himself very worked up. I think it happens a lot when high yeast levels and extreme fatigue sets in for him but it is by far the hardest thing to see him go through. I want to hold him, but he won’t let me. We just tell him he will get through it and stay by him until it subsides. Sometimes that is minutes but it has lastest almost an hour before. It is heart wrenching for a momma to see her child hurting and not be able to solve it and fix it. Big hugs as I know this one is a toughie to cope with!! B~
Yes, and if they do not, we’ll keep trying other things. The good thing about this is that while it is very upsetting to watch, I know Emma will continue to progress in this area, just as she has in all areas of her life. She is learning to express herself better and with more ease and with that comes tremendous relief, I think, for her.
Emma used to cry in the same way you describe Brett’s upsets. It would often go on for a very long time and she would not allow me or anyone else to comfort her. In fact she did not want to be touched at all. Respecting that and sitting nearby was the best we could do. But over time, that too has changed. Now Emma will often come to me and sit on my lap, or will throw her arms around me and bury her face.
It is absolutely fabulous that you are teaching her the names of feelings. The ability to say things like, “I’m so frustrated!” will stand her in good stead for the rest of her life. It is the usefulness-opposite of “We do not bite.” (The reason [I think] that latter is not useful is that she has very good warrant for believing that at least some of us do indeed bite, so the statement is at best confusing and at worst not the truth.) And I am so looking forward to meeting you in New York!
This is such a good point. For years we have said things like – “Emma, you cannot bite yourself!” or “It’s not okay to hurt yourself!” and while these were all said with the best of intentions they are confusing messages to someone who is clearly obtaining some sort of relief or release in the act of biting or hitting herself, not to mention that they are unintentionally dismissive of the fact that she already has bitten or hurt herself, saying that she cannot is a bit after the fact. I also see that these comments are statements reflecting our distress rather than doing anything to address the intense feelings she is having.
I’m really happy to be in touch, Ibby and am very excited to meet you in New York. The conference looks terrific!
Would it be possible to have Emma initially wear a simple bracelet with the chew tube attached? In the heat of her frustration it must be nearly impossible for her to self-regulate and redirect herself to a point where she’s able to consciously seek out the tube. However, if it’s physically there whenever she is about to impulsively bite her hand/arm, the visual presence might be enough for her to choose that alternative. I remember when Emma used to wear a chew tube necklace that she loved. I have a feeling she’d go for this idea. Once she’s accustomed to choosing the tube rather than self-injury, it may be sufficient to be kept in her pocket or in an accessible part of the classroom. Maybe? Either way, it seems like Emma’s already gained from the chew tube’s resurgence 🙂
I like the chewy tube bracelet idea, not sure how we can fashion one to wear around her wrist, but there must be a way. Let’s brainstorm this idea this evening.
Will you link to a pic of the chewy tube? I might look into one of these!
Here you go:
http://chewytubes.com/products/chewy-tubes/
when zack has a melt down (not as often as he used to thankfully) what helps him is deep pressure hugs, but from behind! I sit behind him, wrap my arms and legs around him and hug, firmly! Now he will often come for a ‘squeeze’ like one would normally hug, but when he’s very stressed we have to squeeze from behind him!
So wonderful that you have some things that you can do that help him. I think the sensory overload must be unbearable so it makes sense that Zack would want to not have to deal with all of those senses required of him in facing others too. By having you behind him he can just concentrate on the sensations and nothing else.
You could make a chewy tube necklace…..I have also seen teething rubber necklaces for moms to wear for their baby to chew on. I almost got one for my Emma, but she felt the rubber was too hard. The tubes also did not work because they hurt her jaw afterwards, I think. too much chewing gave her like TMJ.
I just found some chewy bracelets on amazon and bought one. Not sure if it’ll work as last night Emma became frustrated when she couldn’t find a book she was looking for and with the chewy tube in her mouth, bit her arm. But we’ll keep trying.
do you think it has less to do with the need to chew something and more to do with feeling something on herself? Perhaps she somehow gets something
from the sensation of her being bit? I know that sounds strange, but I wonder the same thing for emma with her sensory system the way it is
Yes, that’s exactly what I think. I think and of course I cannot know that this is her experience, but it seems she is deriving some kind of release, even relief from biting herself. As someone who used to self injure, I can remember the feeling. It was very much a feeling of relief AND release in hurting myself. Having someone tell me not to do it, was unhelpful. The only way I was able to stop was by finding other things that were not harmful to take the place of the more self destructive behavior. I also think as Emma is able to gain more control of her world and the things that happen in it, through language and writing, these behaviors will dissipate. Or so I hope.
– My daughter started banging her head against the wall whenever she was in time out (this was when she was 4 1/2 and she didn’t get diagnosed until 5 years later). We were beside ourselves. We took it so far as physically restraining her with our arms (bear hug from behind in sitting position). Over time that worked but I really do not recommend it. We did not know where it was coming from and we did a lot of training and roll playing with what to do with anger and frustration but still.. the “hug” through the yelling and anger and rage was what stopped it but I think there was damage done in other ways. We got outside help because previously she was the happiest sweetest child ever. This behavior started when she got into Kindergarten and kids were mean to her. She wouldn’t even tell on them and still was sweet to them (she is still this way today) She got a little older she started scraping skin off her forehead. I just told her that God made her body and she can’t not damage it on purpose. Then we started charging her $5 (when she was 7 because she started liking to buy things and needed to save for stuff) if she turned to it instead of the tools she knew she had and had learned in therapy for her anger (screaming into her pillow, tense all mussels and then release- this one she said makes it worse- hitting her pillow, and we got her a real hanging punching bag and gloves. Also, at this point I can tell when she has had a day that left her feeling hurt and watches for signs that it is getting to be too much. We talk and she will say nothing happened and she is fine. I will give her love and hugs and wait. Knowing it is coming is wonderful and can get me ready to be totally available to her. After she is able to get some anger out she feels lingering attitude/frustration she stays into her room (sometimes only because I have to tell her she has too) and either draws or reads and then she comes out her happy self again. I know my daughter is blessed with being on the lighter end of the spectrum and she can do this but I can relate very much to when the frustration and anger hit it is in rage. It is frightening and the helplessness to how to help can be extremely painful to both of you. We spend a lot of time talking about how feelings “feel” and what their names are. When she was really really into the rage I would say (loudly because she was yelling) “You are angry, you feel like your body is filled with energy and you feel like you can’t stop it, You are sad about how someone talked with you, you are mad at me right now, its okay, everyone gets these feelings. Breath, you will get through this and we will be able to talk about it so you can feel better”. How to breathe and do something to get the energy out so then she can deal with the emotions. Its very much like her brain does not understand the emotions but her body does. And with the brain not being able to relate it can’t help the body deal with it so role playing and teaching what it is and what is happening and what the body needs to be able to deal with it just like the social skills we are learning seems to be the key for her.
Long post.. just wanted you to know I have been (and at times still are)there and I know over time you will find the “thing” that well, it may not fix it but it will make it better to deal with when it does happen. Even times when she can help herself when she is not there with someone to talk her through it. My heart is with you.
Hi Barbara. I really appreciate your comment. Yes, it’s difficult, but it has gotten better over the years and it’s good to hear your daughter has also.
I just read Carol’s post and I just wanted to say that the only reason I think the “hug” for Anna didn’t work was because she didn’t want to be touched at the time. If she liked it it would have been the perfect way to help her. I am glad Carol that it is something that feels good for Zack ❤
Emma did not like anyone touching her either, Barbara. Especially when she was very upset about something and overloaded. That has changed over time, but I don’t touch her unless she initiates it. Often she will come to me and sit in my lap or will put my arms around her, indicating she wants to be held, but she will also turn away from us during times of upset and it is clear she prefers not to be touched during those times. Respecting her boundaries is something we’ve tried hard to be more aware of.
I know how you feel when you see your child hurting herself. My son is four and was diagnosed with autism at 20 months old. He has been head banging since 18 months old and over the past 6 months started punching himself. He does it so hard his face will look black and blue if no one stops him. We just got a para for his bus rides because no one was stopping him. It’s hard, he is so strong and though he says some words, he still only communicates by taking me to what he want but he can’t tell me if he is in pain. My husband is deployed but my 7 year old has stepped up a lot to help, he is such a good big brother. I found your blog because I’m trying to find books written by people with autism on their own experience with self-injurious behavior. I just want to know what he may be thinking. I know it could be for a million different things but I really just…… I don’t know. His ABA therapists are great and trying to find ways to make it stop. Do you know of any books? I wish you, your daughter, and family the best!