Sunday, June 14, 2009


Today's post is in response to a post Cale wrote at Spectrum Siblings. To read it click here. I have written about Cale before, he has Aspergers and a brother with classic autism, who reminds me a lot of Daniel from his writings. Cale wrote about Pica in response to a question from a reader. He often fields questions, answers them the best he can and asks for input. My answer, as usual is going to be very long, so I decided to write my own post in response to it. Some of it will not be easy and I have struggled with how much to share. You'll see why further into this post. For a brief explanation on Pica, click here.

Daniel has had issues with this his whole life. He likes to chew and eat inappropriate things. I am happy to say that this has lessened a great deal, but it has not disappeared, and I don't know if it ever will, but I am hopeful. When he was younger he chewed on the sleeves of his clothes. He would do this until his sleeves were wet half way to his elbows, then he'd start screaming because his sleeves were wet. Then if you'd try to get him to change his clothes and he'd scream because he had to change his shirt. GAH! (He STILL doesn't like to change his clothes half way through the day.) It happened over and over again, and was very frustrating for all.

One of the strategies we used to get him to stop chewing on his sleeves was the "chewies" his OT (Occupational Therapist) gave him. He still uses these at school, although not as much as he used to. We have a LOT of them at home, but it is pretty rare that he picks one up. He knows where they are kept and just walks over to get one when he needs it. He seems to more when he was stressed out. He never chewed gum, which is also a popular strategy. The chewies are sort of like phone cords. I'm realizing that if you are really young you may not even know what a phone cord is! So sad! It isn't actually a phone cord, so please don't cut one to use for this! So here are some pictures.

They are really big enough that they (probably) won't swallow them. My thinking that if it did happen they could still breathe because of how they are made. That might be insane to think that way, but I know it went through my head. The thickness is something that a lot of kids on the spectrum like at least the kids that I know who have used them. To see one that is similar but in a necklace or bracelet form, click here. But Daniel's are just strips. He like them hanging out of his mouth like above but sometimes the whole thing is in there. This freaked out some teachers initially, but then everyone got used to it when he never choked! Just so you know, he has millions of them and the "grey ones" are preferred. I even got a call once because the school couldn't find any of the grey ones and the 20 "clear ones" were being dissed by him. I went through all of his pockets until I found one and brought it to school. So he does play favorites....

I remember walking through his school at the beginning of a new school year. I'm guessing it was before 2nd or 3rd grade. Another child and his mother were passing us in the hallway. We were there the week before school was in session so Daniel could see his new classroom and teacher. The child passing us said, "I know him, that's the kid that eats dirt." He wasn't trying to be mean, I could tell, it was a statement of fact, but it still broke my heart. You don't picture your child as the one who eats dirt at recess. As part of our Team Daniel at school we had many many discussions about how to stop this. For a long time he got a mini candy cane before each recess. It gave him something hard to munch on to give him some of the sensory input he was looking for. I don't think it helped completely, but it did keep him away from the dirt for part of the time. Of course people tried to watch him and prevent it from happening, but honestly, if he wants to, he'll find a way!

In the winter it is snow. He eats snow CONSTANTLY. Still does. Even this past year one of his 6th grade friends talked to their teacher out of concern for Daniel because he was licking the swing set pole. The child feared that Daniel's tongue would stick to the pole. Bless that girl! I think we reasonably warned him about what could happen if that continued and to my knowledge, it hasn't. He just went back to wiping snow off with is mitten and eating off of that. I can't tell you the hundreds and hundreds of times parents or strangers would say, "you know, he's eating snow!" (egads!) and I'd pretend like I didn't realize it and shoo him away from it. Or they'd say something like "you should tell him he can't do that". (ok lady because the one millionth and first time I tell him will DO THE TRICK!) I am exhausted from it so I fully admit that sometimes I just ignore it! Where's one of those parenting awards now??? I do remind him on occasion hoping that the light bulb will go off and he'll stop. I know I know. All kids do that. But not when they are 12! Usually when you are much younger.

And yes, the worst of all, when he was learning to use the toilet (just before he turned 6) there were many many times that I found him covered in poop and eating it. It was the single worst experience I've had raising a child with autism. Toilet training is more than a blog it is at least a chapter in a book, if not a whole book! But for now, I can't tell you how angry it made me. Looking back on it, anger seems like the wrong emotion to have, but it's what I felt. I don't know if it was necessarily at HIM or if it was at the situation that I had to deal with, but it was awful and horrific. For years after that, it seemed that every January I'd get a call from school because he'd come back from the bathroom with poo smeared around his mouth. That would last a few weeks then go away. I'm happy to say it hasn't happened in the past two years (this is me knocking on wood) The school handled it with such compassion and dignity for Daniel, I have to say that. I would cry every time. Partially out of frustration. The only reason why I am writing about this is (back to my struggle of how much to share) because when people see Daniel now, they don't think we've had to deal with things like this. So I am telling you we have. It is somehow hard for people to believe that someone as "high functioning" as him would do this. But he did. And I know he couldn't help it. And I know it really upset me. REALLY UPSET me. I hope that some day he understands that the only reason I share this is for other parents in the same situation to know that this to shall pass. It can be difficult. But you keep trying new strategies and it will get better. Write social stories, get chewies, follow other strategies other parents suggest. They'll grow and mature, and then you'll have something else to deal with. Like puberty, or driving, or adulthood. It's always something!


mama edge said...

Thank you for sharing so that other people won't feel so alone with the weirder aspects of raising a spectrum child.

I would have PTSD if I'd lived through that poop incident. Yikes. I still get shudders remembering my Rocky's odiferous "fingerpainting" back in the day.

Me said...

My hats off and Kudos to you. We have some similar issues (eating erasers, crayons, glue and just about anything). The nurse called once to tell me had eaten his eraser and the metal band. She was noticeably concerned at my lack of reaction. B chews gum now. In fact, tonight at VBS he was given a toy crown made of a Nerfball-like material, one of his edible favorites....I quietly slipped him a piece of gum to hopefully discourage him. The thing is so many people don't understand that uncontrollable nature...I didn't for the longest time. Gum off the bottom of restaurant tables, things stuck to vanities in bathrooms, then there's that half a worm we still aren't sure about. I still don't know what drives it but I get that it's part of him.

Anyways, again, thank you for sharing. I will be encouraging my blog-reading family members to read your honest description of this difficult aspect of our Asperger's kiddos as it is excellently written and also a window into our world.

Tanya @ TeenAutism said...

If Nigel ever ate dirt, I was unaware of it, but he definitely eats snow. Tons of it. Also ice. In the winter, he'll scrape ice off the dirty car windows and eat it. He has only recently been able to verbalize how much he likes to have cold things in his mouth. My aunt gave him a snowcone maker, and it was the best gift ever. He eats the shaved ice even without syrup flavoring. In fact, he prefers it plain. Now, at least, he meets his need for consuming ice in a healthier way.

Jenn said...

OH we have those issues! I really though I'd never say Devin stop licking the house!

Tanya from Teen Autism sent me. I have 3 shirts for the Tie Dye Project left. Email me if you are still interested!

Amy said...

Great post. Feel free to share the Beckham post--she writes about Lucy a few times a year. Each essay is terrific and so close to my feelings about Joe.

Anonymous said...

Thanks for sharing. The poop story is one I can relate to. We're not fully out of the "Poop Art" stage yet. And as for the person who mistakenly ate it... it was her little sister Hope (1 yr. old at the time). Wow, I feel so much better for sharing that!