Emma and I are heading out to Fire Island this afternoon with my friend, Bobbie. This has been cause for great excitement as Emma has counted the days until we leave. Last night, Emma and I had the following conversation.
Emma: Go to take Bobbie at the beach!
Me: Yeah. Are you excited?
Em: Yeah! So excited to see Bobbie and Mina and Luca. Going to go in the ocean.
Me: Yup, we can go swimming and…
Em: (interrupting) Going to go play in the sand.
Me: Yes. We’re going to spend the night. We’re going to spend two nights there.
Em: (Holding up her fingers) Three minus one equals two! Having a sleepover with Bobbie at the beach. Going to bring Cokie! (Cokie is a scrap of what was once a blanket, measuring about five by three inches and is constantly getting lost leading Emma to panic. We live in dread of this last large scrap one day mysteriously disappearing into the great dark unknown along with the rest of her blanket.)
Me: But Cokie has to stay in your bedroom.
Em: Cokie get lost! Ahhhhh! Who took it? Somebody threw it away. They threw it. You cannot throw Cokie. (All of this was said very quickly in an animated voice, it’s a kind of scripting, but it’s within a context in that Emma is expressing her fears and anxiety that her blanket might get mislaid.) No, not going to bring Cokie into the water. You can’t bring Cokie onto the beach, that’s silly. Cokie might get lost! Cokie will get dirty. Ick! Cokie has to take a bath!
Me: You’re funny.
Em: (Laughing) No. Not going to put Cokie in the washing machine! It’s too little. No, not going to put Max in the washing machine, he’s too big. Max can’t breath. You have to pull him out. That’s too small!
Me: Do you think we should wash Cokie before we take it to the beach?
Em: Nah. Have to gotta go. Max came to the book party. You hit Max. You pull Max’s hair. No. You cannot pull Max’s hair. You have to stop. You can’t do that. Max is hurt! (This is another script, but it’s one she made up and it’s really a spoken memory of Richard’s book party celebrating the publication of his novel a month ago. Max is a great friend and someone Emma adores. When Emma really likes someone she wants to pull their hair and hit them. She is still trying to sort out how to resolve some of these impulses while also connecting and making physical contact with another human being without hurting them. We are working on this.)
Me: Yeah. That’s really hard, isn’t it Em?
Em: Makes me so frustrated! Grrrrr!
Me: (Laughing) Do you feel frustrated now?
Em: Nah! Emma’s happy! Going to go with Bobbie to the beach. Going to have so much fun!
Just before I had this conversation with Emma, I was talking with my friend Ib. She said, “It is easy to picture Emma talking more. She can still be her if she does. She will talk oddly about odd things that she blisses out about while twirling string, and walk away mid sentence.”
And I wrote back, “Yeah, and I’ll (removed explicative) love that! Seriously love that! Because I want to walk away in mid sentence half the time…” Ib then wrote back “And frankly, in your family, it won’t be that odd. Hehe.”
Which made me laugh out loud and filled me with so much hope and happiness with the thought that Em and I could converse the way Ib and I do. And then Emma came home and I told Ib I’d talk to her tomorrow and Emma and I proceeded to have the conversation I’ve transcribed above.
Yup, there are little miracles happening all the time!
Have a wonderful weekend everyone! The journey continues…
Hey though bringing up the Max thing right there sounds to me like she has concerns that she will have so much fun and get to liking people so much that she accidentally pulls their hair or whatnot there on Fire Island. If you give Bobbie a big old high five and on the side or however you have been doing it with Emma it may signal to her that this language works on the island as well and allay some of those fears, especially if you also say so, as in, “Yay, Bobbie knows how to high five!” and if the kids are right there they will probably also demonstrate this ability. I could be wrong here but I doubt it because when my mind goes to a random you don’t do that memory it is usually because there is a somehow analogous situation coming up.
Oh this is such a great observation, Ibby. Thanks for saying this. I think you’re right. I wasn’t seeing that connection, so glad you told me!! XX
Emma is really fascinating. She has traits I’ve almost never heard of before. Her “scripts” remind me of some rare form of echolalia or something. I’ve always thought of echolalia as a learning process, but I know of no research or anecdotes that back that up, it’s just my own idea that I would have a hard time explaining in detail. But it is clear that Emma processes information, files it away for future reference and retrieves the exact scripts from memory that apply to new situations, even if they are scripts from months ago. I get the impression she is intelligent because she has a very good memory and understands analogies the way she associates past scripts with current situations.
From the conversations you post with Emma, it is clear that she understands correct grammar, but doesn’t use it very often for reasons of her own. It is interesting because I lived in Thailand for a few months and tried to learn their language (and failed miserably), and Thai has no verb conjugations, and they almost never use a subject or articles or prepositions. If a Thai person says, “go store”, it means they are going to the store. This is correct grammar in their language and I got used to hearing them speak English to me the same way. I wonder if Emma’s mind moves to fast for English and all of its verbosity.
I also noticed your friend’s comment, “She will talk oddly about odd things that she blisses out about while twirling string, and walk away mid sentence.” Does Emma like to twirl stuff? I’m a poi/fire twirler and I think it is a great thing for certain autistic kids to learn. Poi spinning uses both sides of the body (and therefore both sides of the brain with lots of crossover) and it is really fun to do.
*Googles for vid of Poi Spinning because that sounds So Incredibly Awesome*
Ahhhhhhh!!!!!! Sweeeeeeeettttt!!!!!! Everybody Google-image that!!!!!!!
This is the best poi site in the Internet. It has video lessons and lots of equipment to purchase. http://www.homeofpoi.com/
I think Em’s echolalia is her way of learning and processing and I absolutely think she uses specific sentences as ways to communicate. It’s a little like a treasure hunt for me as her NT mother, whereas Ib often has insights like she did above that I often miss. I think those of you who are Autistic can more easily make connections sometimes than I can, because it seems there is a connecting the dots that you seem to recognize that I don’t necessarily. Of course this is a massive generalization.
I will have to take a phot of Em’s string. It is very much a work of “art” and something she adds to constantly, so it’s more than just string or ribbon. I wrote a post, Moves Like Jagger, awhile ago that has some photos of her beloved string. I love that you and Ib posted links to Poi spinning. I’m going to take a look later when I am able to get on my computer. Loved hearing about your travels. Would love to hear more about your adventures in Thailand sometime.
So I have not been able to get this conversation and Thai culture out of my mind all day. There are two other things that are very interesting on that topic. I’ve noticed that in some of the conversations that you write about having with Emma, she refers to herself as “Emma” rather than “I” or “me”. In Thailand, it is very common for women (more often than men) to refer to themselves in the third person, which is perfectly correct in their language. You can read about that on this webpage if interested (about one fifth way down the page is the section called “Thais speaking about themselves in the third person…”) http://womenlearnthai.com/index.php/thai-language-thai-culture-questions-on-thai-and-thai-usage/
Also, people often say that autistics do not understand sarcasm. When I was really young sarcasm never made sense to me. I didn’t get it. But living in a society where sarcasm is so common, I came to understand it and learn how to use it effectively. But most people in Thailand are confused by it. It is a very literal culture. Here is an online conversation about that. http://www.thaivisa.com/forum/topic/207184-thai-culture-and-sarcasm/
Thailand is more than 95% Buddhist and is very tolerant of individual differences. It is one of the few countries in the world that was never colonized by western nations. It was called Siam until about 100 years ago or so when they changed the name to Thailand because the word “thai” means “free” in their language. They consider themselves to be the thai (or free) people because they were never colonized. Animism (an ancient belief system) is still a huge part of their culture. They believe that everything has a spirit, which is similar to the way autistics sometimes personify things in their minds, a form of synesthesia.
It seems I’m using the comment section of your blog to brainstorm about a possible future blog post about all of this (which I have done before in other comments I’ve written), but who knows when I’ll get around to writing something like that. But it certainly is interesting.
Emma makes complete sense to me! When J and I converse, he appears to meander from thought to thought, but it is because he is living still in the here and now — a complete “presence” where everything is here at once and he is selecting all these paths he can take with his ideas for a conversation.
Yes, the here and now, comes naturally and yet we NTs have such trouble with that!
I love this…
I was also thinking that Emma might really like and respond to those gymnastics ribbons. You can purchase them online – but we actually made 4 of them for use with H (Which was fun). We made two each of two different colours.
We would put on music and use the ribbons with H. This is an awesome activity for crossing the mid-line of the body – which is often an issue with our guys. Also – it provided a fun way to interact and connect and co-regulate. We would copy one another and wordlessly transition/ shift who was the leader to lead the moves. This also provided a fun and interactive way to practice turn-taking without being bound by the potentially stressful rules of a board-game.
It seems like Emma is processing so much and really wants to connect. I can’t help also thinking that there may be some information in this post that you might find useful:
Thanks so much Leah, will take a look later this evening. Em and I are in Fire Island for the weekend with my girlfriend and her family! Em’s having a blast! Loved hearing about you and H swirling, twirling and dancing, Em and I do that too! Such fun!
Thank you Win!
did you get 2 email from me?
Makes a lot of sense to me as well. As an adult much of my process is still speaking myself through it but it goes on mostly inside my head. Sometimes I slip and something that should be external wind up outside and in the worst case scenario a person could take offense. Like when I am frantically try to work out who a person is who can say my name (my real name is never pronounced correctly in this country be people i have not taught to say it so if a person can say it I can reason I know them well enough to have taught them it). A lot of inner dialogue goes on as I eliminate the possibilities. A few weeks ago I eventually concluded with some certainty someone had to be someone and said as much only to find I was completely wrong. Then the inner dialogue excuse of him being a fairly generic specimen of the average height, slightly balding,portly, genial with glasses man slipped out. Followed by an oops you are not supposed to say that. Thankfully due to how he knew me he also knew about my autism and was more amused than offended at the time but whether he will mull over his category later and be hurt i don’t know. I am glad that the genial was in there overall.
Programs are constantly being executed inside me to address different situations. With varying degrees of success I guess depending on how i am doing overall.
In general I try to avoid labeling how I do things with autism catch phrases because sometimes things that are actually pretty important to me get dismissed with them. My opinions are often written off, by even people who presumably love me as a symptom or example of black and white thinking for example.If I have a very strong and certain opinion about something couldn’t it be that I have spent many hours considering it or educating myself about it rather than it being a symptom? I’ve seen people conclude something is echolalic, or perseverative that had real communicative or social value. Emma is quite lucky to have parents that are willing to view the possibilities as far as what something could mean.
Gareeth, I just love hearing your thoughts, thank you so much for writing and commenting. Your description of trying to work out who the man was is so wonderful, and quite honestly very helpful because Richard and I often remark that some of Emma’s dialogue sounds so like thinking out loud, so you’ve verified that for me!
I want you to know how much I appreciate your comments. Thank you.
when zack started talking at age 4 he used single words for almost everything. When he started first grade at 6, he clicked very quickly with reading. As his reading books got more complex, so did his speech. For quite a long time, i could recognise almost every sentence he spoke as a slight adaptation of something from one of his reading books! I still recognise a lot of what he says from stories, he’s in grade 3 now! Its been fascinating to watch him progress.
Thanks so much Carol. That’s interesting. Sounds like he’s making such wonderful progress.
You are so lucky. I long for the day Marisa will say a word, any signifigant word, let alone a conversation. Your posts are so beautiful, but sometimes they damn near break my heart.
Sorry to be such a bummer. Just having a really hard time lately.
Oh Angie, I completely understand the feeling of sadness when reading about someone else’s child. I cannot tell you how many times I have done that and felt sad because the comparison was just too painful. Just know you arE not alone. Iam sorry things are tough. I’m sending you hugs.
(((((((((((((((((((((((Angie))))))))))))))))) I understand.
I understand too Angie!!! My Brett is 8 and non-verbal. I try to learn from these “verbally” types of posts by maybe trying to get a peek inside of Brett’s head to see how he may be thinking of things or perceiving them. The kiddos that are verbal can really provide an insight on those things for us. I won’t argue though that I wish, pray, hope every day that Brett will begin to speak. That will never go away! So BIG HUGS! 🙂
Thank you, Ariane and Jane. It’s been a tough few weeks here. I went to the ER two weeks ago, with a pounding fast heart and palpitations. This has been going on awhile. (We got booted off of Medicaid, and I didn’t have money for an office visit.) Anyhow, all the tests came back ok. They dx’d it as tachycardia and anxiety. I had to be put on a b/p med years ago due to my panic attacks, now I’m on a beta blocker as well. The good news is that it seems to be helping. The bad news is my nerves are still shot. I just really feel like I’ve been circling the drain lately, kwim?
Marisa had a rough time shortly after that. For about a week, she kept getting violent with me, and attacking me. I think I told Ariane about it. The doctor upped her Zoloft, and told me not to be scared to give her the Ativan as needed. Both have helped, she seems more like herself, and is even using the potty great.
I think sometimes reading about Emma upsets me because she is so much more high functioning than Risa is. Risa doesn’t even talk. It’s the same for the kids I see at her therapies. High functioning, talkative, quirky kids who I’m sure all have their own issues….but at least they can COMMUNICATE.
It always makes me angry when some well meaning person tells me that “you’re lucky, she could be in a wheelchair. She could be blind or deaf, or have cancer.” Are you kidding? I would take any of those, any day of the week.
I think the scariest part of the last few weeks is thinking, how would her dad care for her if something happened to me? Or, how will we handle it if someday we can’t care for her at home? Facing reality sometimes really just effing sucks.
I don’t mean to hijack the comments with my problems, I apologize. It’s just hard finding people who understand.
When I started this blog two years ago I met a woman in Panama where we had taken Emma for highly controversial and extremely risky stem cell treatments (I do NOT recommend doing this and regret that we did) whose son spoke circles around Emma. He was this hilarious kid, who to me seemed fine, but he had more than 80 allergies and his mom complained to me about them. I remember saying to Richard, if Emma was like that I would be ecstatic and would never have subjected my child to such a risky treatment were she even in the same ball park as him, how can she even complain?
There have been countless times over the years when I have read or met kids, also on the spectrum who are mainstreamed, highly verbal, excelling in a variety of subjects. I have struggled with my sadness and fear that Emma is not where they are, that she may never get to where they are. It isn’t all the same. Our children are not all at the same place, there are huge differences and those differences are often massive.
The thing that all of us have in common is an undying love for our children and a desire for their well being. We can extend our hands out to one another in friendship and love and we can offer support. We can listen to each other without judgment and we can say – I am here for you. I am sorry you’re in pain. We can give virtual hugs to one another and we can make sure none of us feel alone. It won’t change the facts, it won’t lessen ouR child’s frustration or pain, but sometimes knowing there are others out there who care can make a world of difference. Thank you for voicing your feelings Angie. If nothing else this is a place you can do that without fear of condemnation, criticism or judgment.
Can you tell me about the stem cell treatments? I have always wanted to hear firsthand from someone who has tried it. I have only ever read about it online.
Probably a longer comment than I can really write, but it is a highly controversial treatment with no guarantees of either positive outcomes or that it will not do tremendous damage. I cannot and do not recommend it. A group of stem cell researchers here in the US working at one of the most reputable Universities on the east coast strongly advised us to not continue. There is just too little that is really known and the current treatments available are extremely dangerous. In retrospect I deeply regret our decision and it certainly did not seem to help Emma with her language or internally with her gut issues or anything else. Richard and I just pray that we didn’t do any damage to her, it is too horrible to think about and something we won’t necessarily know for many years.