The Complexity of Life and Change

*Emma gave me her permission to write about this.

Yesterday Em was having a tough time.  She has been talking about an indoor playground that closed some six years ago, expressing her upset that it’s now a store and asking that we build a new indoor playground exactly like it.  We have discussed the idea that places go out of business and that we can’t bring them back, we’ve talked about what is required to build an indoor playground, but that it will not be exactly like the one that closed.  We’ve discussed the concept of same and different.  We’ve gone over the preliminary steps needed to be taken in creating any sort of space.  Joe even thought she might like to build a model playground, complete with running water and electricity, but none of this has helped.  She remains very upset.  So much so that I began to feel certain her upset was not actually about this specific playground, but that this playground has come to symbolize loss.

“I want playground.  I want to build it.   Will take out the store and build a different playground has slides and a bouncy castle.”

I explained again that we couldn’t do that.  Em then repeated how she wanted to build a playground and then said, “Bertie kitty can’t eat pancakes.  Bertie kitty, the animal vet doctor, says no.  Might get sick.  Bertie kitty died.”

I nodded my head and said, “Bertie was old, Em.  He didn’t die from eating pancakes.  He died because he was very old.”

“I want to take it out!” Em pulled at the palate expander in her mouth and began to cry.

“I know you do, Em.  But we can’t take it out yet.  The orthodontist will take it out eventually.”

“Soon.  I want to take it out now.  I want to build it.  I want to build new playground.”

It’s easy for me to get caught up in the literalness of Emma’s words.  To get swept up in each upset individually, as it shows itself, veering from the closing of a playground, to the death of my cat, to the desire to have her palate expander removed.  If I take each of these concerns separately and at face value, I can quickly become lost in each one.  This is something I continually struggle with, not just with my daughter, but in life.  I take things pretty literally and often try to compartmentalize each thing so as not to get overwhelmed.  So in instances when Emma seems to be racing from one upsetting thought to the next, it isn’t my first thought to look for the common thread.  But I am fairly certain I’m correct about my interpretation of what’s going on here.  I think Emma is working through a number of difficult concepts that in her mind are all related.  The playground closing and being replaced by a store that holds no interest for her, the death of my elderly cat Bertie, whom she loved, and the palate expander that she dislikes and wishes would be removed.  I could be wrong, of course, but it seems to me they are all connected.  They all fall under the heading of permanence and impermanence, or death.

As Emma learns to communicate better through both typing and verbally, we become better at listening and understanding her, her anxieties are becoming more obvious to us.  As her communication skills increase, so does her obsessive compulsiveness, or so it seems to us.  It’s entirely possible that Em has always had this degree of anxiety, obsessiveness, coupled with compulsivity, but we are only now becoming aware of just how difficult it is and how often it overwhelms her.  Leaping from one upsetting scenario to the next is something I do too, particularly when I am tired.  With Emma it’s all about things that are impossible to have, things that are gone and won’t come back or, as is the case with the palate expander, about change, literally physical change as she looses the last of her baby teeth and her permanent teeth appear.

As we continue to support Emma with her typing, we have noticed she is becoming more verbal.  As she becomes more verbal she is expressing her anxieties, her concerns, as well as her desire to be heard.  The more we listen, the more she has to say.  Yesterday as we worked on her typing, I asked, “Em tell me two things you like doing and one thing that’s hard.”

Em typed, with my hand barely touching her forearm, “I like to bounce on the trampoline.  I like to bounce on the bouncy castle.  It is hard for me to work with mommy.  You could help them work with mommy.”

“Thank you for telling me that, Em.  Who should help me so it’s easier for you to work with me?”

“Pascal.”

Emma and Pascal take each other’s photographs  – April, 2013

*Pascal

20 responses to “The Complexity of Life and Change

  1. Ariane – as always your post hit home. I was overwrought with stress, anxiety and fear growing up. As I grew it worsened. I wasn’t able to put a name to it until much later in life when I was diagnosed with autism. I did not have the familial support Em has – my family did not know there was anything to support because I hid everything from them out of fear that something was wrong with me, or that I would be found weak and incapable if I admitted my difficulties. I wish I had known about my autism as a child, I wish my family had. I wish I knew back then, as Em knows now, that nothing was wrong with me. That I was just different. I am happy now, though, and feel that growing up the way I did has made me a better, stronger parent and advocate. And more aware so I can make sure my autistic kids grow up loving themselves and embracing their differences as I do now. I am so happy to have met you! ❤

  2. This is a wonderful expression of your openness and sensitivity to what Em is working to share with you. I think you are right that so much of this is about loss, and the processing of loss. With H, I have seen the expression of loss, and that it is there – but was not as evident to us. He really needed our assistance in processing and expressing his grief. I think he is also has been upset with the closing of a local video store, or the replacement of a family car, because this too is loss. Sometimes it is grief for the loss of routine – or the familiar – which I think is important to understand – because the familiar is like an anchor or a marker to make sense of things when the world is coming at H unevenly.

    This article is related and may be of interest: http://30daysofautism.wordpress.com/2011/12/29/ladybugs-autism-empathy-and-processing-grief/

    Hugs and appreciation,
    Leah

    • I loved that post of yours when I first read it and am reminded of how much I loved it when I reread it again, just now. Yes. Perhaps it is time to create a story about a playground that has closed and will never be played in again, about all those baby teeth that are gone and have been replaced by permanent teeth and a farewell to Bertie Kitty whom Emma particularly loved. Perhaps there is something Em will know to insert into the story, an association that she can tap into when she is stressed and anxious. Thanks for the reminder, Leah. 🙂

  3. “The more we listen, the more she has to say” I knew this, but I needed reminding. Thank you!

  4. I’m having a hard day so it’s not easy to say anything at all, but I wanted to say that what you describe is what I do. I am more verbally expressive now than Emma is now, but I do the same thing and I was trying to explain it to someone (while I was in the middle of it!) and could only come out with something like:

    “Because I build words well and quickly, it fools people into thinking the words I am saying are what I am trying to say. It fools people into thinking the words I am saying make sense because they appear to have meaning and coherence. But I’m not saying what I want to say. It’s not working right.”

    After that, I asked if I could use my AAC, even though I was still able to use my voice. (Actually, I didn’t so much ask as shout and demand and then refuse to speak, but he is kind and was gentle and treated me like I asked nicely.) I learned something about myself. When I switched from speaking to typing, I began to communicate more clearly. I began to calm down. Within an hour, I even laughed and made a joke.

    My facility with spoken language masks many of the very real difficulties I still have with speaking. And I’m not feeling articulate enough today to explain it detail, but Emma’s communication that you describe in this post feels very familiar to me because, while the content is different, there is something about it that is exactly like what I was doing the other day before I switched to AAC because I could speak, but getting my voice to make the meaning I wanted was just too hard.

    • I was actually thinking much the same thing the other day unstrangemind. My rabbi and his wife seeing I was not doing well kidnapped me for a time after torah study and there were things I wanted to say but couldn’t and so I found myself saying things I have often said but those things are complex enough they never really get seen as a substitute for something meaningful but interesting enough in their own right which I don’t intend it just happens. I sit with a burden of things I wish I couold say that I can’t. That get stopped at the throat.

      My ability to cope with change unfortunately seems to have peaked in my 20s and each one seems so much worse than the last one. I feel like I have been living right on the edge of a meltdown for so long it’s exhausting.

  5. I really appreciate this, particularly as you are feeling so overwhelmed right now. Interestingly, Em typed everything I quoted her saying. I also have to wonder whether typing itself, as liberating as it may be, is also terribly, terribly anxiety producing. Perhaps in the way you describe people having expectations about you because of your ability to verbally speak, Em has a similar anxiety around typing AND speech. Perhaps the more firm support when she types that both Pascal and Harvey provide is what reduces that anxiety. Not sure and I’m thinking out loud now.
    Regardless, I do hope you feel better and so grateful for your comment.

  6. Sweet Emma:) Sweet Ariane:) Somehow, this all seems so “normal” to me:) While her expression is unique and wonderful, Emma is changing fast at her age, and, like all tweens, is bound to experience heavy mood swings. It is so wonderful she is communicating more, and is learning to express what is troubling her! Perhaps to just listen and share her sadness and using the moment to explain change in a positive light, and move her focus to the wonderful things she has in store for her. Explain her changing, growing, and how proud you are of her. Laugh at what is hard for you, too! Have her act out her saddness, and sing a song of great mourning. Ask her what a sad dance of great loss looks like, and she will most likely perform it with great beauty. Lean into the saddness, and let her process it in her own dramatic way. When I was small and sad, I would read a favorite story, over and over, about a tin soldier and a toy ballerina, which ended sadly. Kind of like a Romeo and Juliet for children. It helped me. The story was so sad, but written in a calmling, beautiful style.
    It must be hard for Emma to learn express herself, and, at the same time, learn control of her feelings, memories, and anxieties, as we all must. The coming teen years a right around the corner, and are a bumpy ride at best. I had a tremendous surge in ability then. Once I wrapped my mind around the idea of letting go and embracing change, my ability to survive was assured. Sometimes, it only takes the simplest phrase or lesson to make sense of big intenal issues. For me, the concept that a college graduate no longer needs or craves a kindergarten diploma, made me see that each stage of life comes with its own experiences that are different, and that it is good.
    The BEST help ever was when my late husband saw me deeply sad and filled with anxiety (and talking little sense) while adapting to pregnacy’s rapid changes. Instead of trying to make sense of it, he simply grabbed a big towel, sat us both down and handed me one end, and kept the other for himself. He then began to wail and cry with me, comically agreeing with me how sad it all was, boo hooing into the towel. We cried and cried until we laughed and laughed. It all felt so good, and didn’t have to make a bit of sense! I learned to grab the towel whenever I needed good cry, amd hand half of it to him. I am sure it helped avoid many a fight, and we weren’t looking for WHAT was wrong. but rather, just embracing the drama, and yes, even enjoyment, of sad feelings.
    Much love to you all. I’ll be thinking of you during my busy week ahead. It will contain some sadness, I am sure, and it will be embraced.❤❤❤

  7. Ariane…this is also with Emma’s permission who is sitting next to me. I believe she may blog about this. Yes..Emma has begun to communicate her anxieties and OCD have increased. Yes, her verbal skills as well. Her recent blog touched on this. Emma has explained to us that by entering into our world and becoming more aware, there is good and not so good. She is recognizing that the world before she could type and the world now have differences for that she can no longer control. As Emma says she has to look at the world now as it is, not as it was in her mind.like she said in her recent blog about her Barney friends. It was a process, first she learned they weren’t real, then she learned she really wasn’t part of the gang, then she started to write on the videos thinking she needed to let them know she wasn’t coming back, then she began to thank them for being her friends when she needed them,then she accepted she didn’t have to throw the videos away to accept where she is now.
    My guess is that just as my daughter is overwhelmed with her miracle, as we call what has progressed in her life, your daughter may be as well. Change is wonderful and difficult for many of us.

    • Thank you Paige and Emma for this wonderful comment. Emma – just went over to your blog and commented there too. Loved what you wrote about not being asked the right questions. I think this is true for my Emma as well.
      Paige – Yes, change is not easy even if it’s change that we hope for, work for and want, it’s still bumpy!

  8. Another very powerful post about topics that are very hard for me to deal with: Loss and death and OCD. The problem isn’t restricted to Emma’s thought patterns — I have the same issues to cope with. Lately it’s been amplified because I’ve been having these plunges into depression that I know are brought on by stress, which is a tidier word for fear. Like Emma ricocheting from one upsetting thought to the next when in the midst of one of these loops, I’m basically doing to the same thing. When I first noticed the increase in her OCD, I was also intrigued at the focus of her thoughts on things I would categorize as “impossible yearnings”: The playground that will never be built. The cat who died. Yesterday it was the seal show we missed at the zoo.

    Like Ariane, I try to explain in the most logical way I can that: companies go out of business, the last seal show of the day is at 4pm, etc. etc. And then I get upset: “why can’t she accept/understand that this is impossible?” “Why does she go from one upsetting thought to the next instead of concentrating on all the things that make her happy?” “why do I do the same things and act like this is so much different for her?”

    The human condition. Not the autistic condition.

    I am, however, growing more worried at how the OCD is increasing in tandem with Emma’s increasing ability to communicate. Part of this is because I don’t want to deal with the embarrassment of public meltdowns and private crying binges where nothing I seem to say or do brings her any help or comfort. Part of it is the fact that I have OCD as well. It has lessened dramatically (due to certain actions I took), but when it was at its worse it was debilitating. Obviously, I want Emma’s life to get easier for her as she grows rather than harder. But I’m not in control of any of this and the best I can do is accept that this is where things stand today. For Emma and me and our family. And all in all, where things stand is pretty damn good.

    Time for another gratitude list.

  9. Michelle Sutton (Amazing Adventures)

    I don’t know if this would help Emma, but in our house we say something like- I can see you are very disappointed by that, and there is nothing we can do to change what happened, but is there something we *can* do that would help you feel better? Sometimes the answer is “no” and we just have to have a cry. Sometimes we eat chocolate, sometimes we go for a walk… sometimes knowing we would change it together if we could is enough to help lessen the pain.

    • Hi Michelle,
      Thanks for the comment. Yes, reflecting back and honoring the feelings can sometimes be helpful. When things are very emotional absolutely nothing works other than witnessing and offering a calm, (usually) silent presence. Eventually things do calm down. 🙂

  10. I think you are right in your interpretation, based on the quotes of what your daughter said. It sounds like her worries are associations spinning around the principle of loss / discontinuation.

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