Emma Takes Mom on An Awesome Adventure

Yesterday Em asked to go to Victoria Gardens, the amusement park, that each summer transforms the ice skating rink  in Central Park into a kid’s idea of heaven.  “Sure, that’s a good idea,” I told her.
“Take the F train,” Emma announced and began to walk purposefully toward Sixth Avenue.  “But the F doesn’t take us to Columbus Circle.  Why don’t we take the 1?”  “Take the F train,” Emma said matter-of-factly and continued walking toward Sixth.   Once on the train Emma found a single vacant seat in the crowded car and said, “Oh no!  There’s no seat for Mommy!  Mommy has to stand.”  The man sitting next to her immediately got up with a guilty expression and offered me his seat.  “Oh no, that’s alright.  It’s no problem,” I tried to assure him.  But he refused to sit back down, further humiliated, no doubt, by Emma’s interjection of “Oh Mommy cannot sit down next to Emma!”  (Clever girl, I thought to myself, and I’ll admit, with a tiny bit of pride.)  Even though that poor man who gave up his seat had no way of knowing that Emma actually prefers I stand and not sit next to her.  It’s become something of a game, with Em saying in a pretend sad voice, “Oh no!” but then when I sit next to her she pushes me or tries to get me to sit across from her.   (Making me all the more determined to get Emma some theatre training.)

When the train pulled up to Rockefeller Center Emma stood up and said, “Have to take the D train.”  I know enough not to argue with Emma because there are a number of things Emma knows better than anyone and one of them is how to navigate the labyrinthine maze that is the New York City subway system.  Except that when we arrived at Columbus Circle Emma stayed put.  “Hey don’t you want to go to Victoria Gardens?” I asked.  Emma grinned at me and said, “Go fast!”  Then she shook her head and said, “Train goes fast, fast, fast?”

“You want to stay on the train?”

“Yes!”  Emma said.  So we did.  As we sped past each stop Emma shouted out, like the seasoned guide that she is, a specific playground or significant landmark.  “Oh, there’s the American Museum of Natural History!  Oh there’s the tar playground! Oh there’s the …”  We raced along until 125th Street where Emma then led me off the train and walked over to the tracks heading back downtown.  “Where to now Em?”  I asked, having decided after we left the house that Em was going to direct the day, I was very much the passenger along for the ride.  And what a ride it turned out to be.

We eventually made it to Victoria Gardens, but not before we stopped at another large playground and ran through various sprinklers, went through a tunnel, listened to a musician playing his Saxophone, past the artist who’d set up shop  face painting small children to look like fairies, goblins and ghouls.

After several hours at Victoria Gardens we took more trains downtown, transferring so many times I can no longer keep our route in my head, but ending at Seal Park where I ran into one of my close girlfriends and her son.  Another hour and then Em said, “Now go to Chelsea Market!”   Off we went, with Emma lacing her arm through mine and occasionally she’d press her soft cheek against my upper arm.  Emma talked about the new school she will be attending in the fall, she listed all her friends, teachers and therapists, “Justus is gone, Sol is gone, Charlie is gone, Lauren is gone, Miriam is gone.  Emma goes to new school!”  (I’ll write a separate post about that another day.)

Upon our arrival to Chelsea Market Emma raced to the water feature and began to point at various things that she wanted to know the name of.  We discussed how there were wooden planks on the floor and what was under those planks – maybe a hole, darkness, who knows?  She tested the plank by sliding her foot through the guard railing and pressing down on it.  She pointed to the water gushing from a large pipe overhead.  We discussed where the water might come from, “Ocean” was Emma’s guess, and it did have a briny smell, either that or the Lobster Place and Seafood Market just opposite was giving off the distinct scent of salt water and fish.  Emma pointed to the large pipe and we walked around to the other side, following the pipe.  A huge wheel hung from the pipe and Emma said, “I can’t reach!  Have to get a ladder to turn the water off.”

This conversation with Emma was revelatory for many reasons, but most importantly it was the first time I have had such a lengthy conversation with her about something that did not have to do with a want, desire or need.  She was curious and though she spoke cryptically throughout our conversation leaving me confused as to what she was saying or asking, it was fantastic.  “Plank fall in,” she said at one point pointing to the water.”  And then again pointing up at the pipe, which I didn’t understand, making me wish I could put the pieces together.  I have been unable to find out any more about the water feature at Chelsea Market, having spent some time on google when we returned home.  I tried to find out the source of the water, does it ever get turned off, is it recycled, etc. so that I could tell Em more about it.   She was curious, engaged even mesmerized.

Eventually we headed back home, but not before we stopped at one last playground to run through the sprinklers!

When we arrived home, Em said, “We have to call Daddy!”  It was just one more first in a whole day filled with them!

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27 responses to “Emma Takes Mom on An Awesome Adventure

  1. Okay, I need to take a nap after hearing about Emma and Ariane’s Day of Delight! Wow! My goodness she must be going through a major brain spurt right now. Think of all the connections that are forming in that brain of hers. It was fascinating to watch as it happened in Teddy, how he could connect things he couldn’t connect before and I am equally fascinated (not to mention much more well rested) reading about Emmas! I am beyond delighted for my delightful friend and her doubly delightful daughter! 🙂

  2. Sorry if this shows up twice. WordPress is wacky on my phone. Anywho, the day sounded fabulous! I wish we lived in a big city, so we could experience that much fun, within walking and subway-ing distance. Also, I think my daughter has that same bathing suit 😉

  3. Sarah Caldwell

    YES! Building trust by active listening to more than just words, ie body language, heart and soul language… Under Standing…. So beautiful to share. Thank you for inviting me along to witness!!

  4. I’m so happy for you and Emma. What a wonderful day! I wish I was there, but then you wouldn’t have had that intimacy. Best of all, I’ll see you tmw!

  5. Wow sounds like an awesome day out. I love how she’s getting you seats on trains lol. So much speech and observations. I love this stage of life. We had so much fun seeing our eldest go though his early connections. Learning and growing on the road. We are still waiting on this verbal stage with our youngest son. But it is the most awesome time seeing them grow. Thanks for sharing your great day out !

    • Yeah, worked like a charm on every single train we went on. Because it was Sunday the trains were really crowded, didn’t have to stand once! I began to feel a little guilty. Wanted to say – Oh it’s okay she doesn’t really want me sitting next to her!

  6. This is another of those posts that was very difficult for me to read. But I’m so very happy for the great day you and Emma had!

    You know, you told me the other day something along the lines of “there is so much hope” – I’ve been thinking about that. I’ve been trying to believe it, but I just don’t. The biggest thing I can hope for at this point is that my daughter doesn’t end up to where we can’t care for her at home. I’ve long since given up hope she’ll ever talk, or truly understand the world we live in.

    Sorry to be such a downer, Ariane. I truly am thrilled about the day you guys had!

    • Angie, I understand. Really, I do. When Emma was younger and had almost no language I wondered whether she would speak. When Emma was so constipated she couldn’t walk and every night she sat in the bathroom screaming as though she were giving birth while I tried to sit with her, holding her, encouraging her and after over an hour every single night every single day for YEARS I thought this will never end. When Emma used to wake up somewhere between 1 and three in the morning, unable to go back to sleep until 5:00 I thought this will go on forever, if only she’d sleep through the night, when night after night she wet her bed, despite wearing diapers for years on end, every night having to do loads of laundry at 2AM I thought I can’t go on. And you know what I did and what I’ve found is that all that thinking, all those thoughts just made me more exhausted. It didn’t help her, it didn’t improve the situation, it didn’t help me and it didn’t make my fears any less. I couldn’t see Emma because I was too exhausted, too depressed, too terrified, all I saw was fear, all I felt was desperation.
      And then I read this – http://juststimming.wordpress.com/2011/04/05/the-obsessive-joy-of-autism/ and after I read that I read every single post on her blog. Which led me to this – http://ollibean.com/2012/07/17/ollibean-think-tank-member-amy-sequenzia/ and I googled Amy Sequenzia the nonverbal self advocate I told you about a couple of days ago and I read everything I could find that she’d written. I reached out to her and bought her poetry book, My Voice. This is from her poem “My Voice, My Life”
      “Look at me.
      Go ahead, take a good look.
      What do you see? Weird? Silly? Pitiful? Can’t do anything?
      You might feel sorry for me
      You might pity me
      You probably think I should be treated like a child
      I’ve heard and seen this before
      “Can she understand me?”
      “Does she know what is going on?”
      “How can she make choices?”
      I understand your confusion
      But it is time for me to come out
      Let’s just make something clear
      I am autistic
      I am disabled
      I have many special needs
      I look different
      I need help eating, walking, moving around
      I do not need help
      Then I read the book written by Carly Fleishman and her dad, it’s called Carly’s Voice – http://carlysvoice.com/
      Then I read about Tito Mukhopadhyay and watched this – http://www.youtube.com/watch?v=YRhaevfLDOY and I ordered Tito’s four books and I read them.
      And…. okay you get the point I won’t stop throwing links at you, because those links, these people and children are what have saved me. And it hasn’t stopped. Every single day I talk to and email Autistic adults. They are my friends, they’re part of my tribe. They are my friends, I confide in them. I reach out to them. Yes, we talk about Emma, but we also talk about whatever is going on in their life and now there’s one friend in particular who’s like my sister. I rely on her. We laugh, we talk, we joke. She’s autistic and I’m not and none of it matters. Angie, I don’t worry all the time, I am not afraid, (okay not completely true) I’m not afraid the way I once was, I KNOW, I absolutely KNOW that just because a child is nonverbal does not mean they are not intelligent. Just because they may not look at you, does not mean they don’t SEE you. Just because they do not answer does not mean they don’t WANT to. Just because they appear unable to understand does not mean they do not. I can’t MAKE you know this, but I can keep directing you to the places I went when I felt despair and hopeless. I can, Angie and I will. You keep showing up here and commenting and I’ll keep throwing links your way! Remember, you’re part of the tribe, like or not. So you may as well take some time to look at this stuff I’m sending, because what have you got to lose? Ask yourself that. What have I got to lose by believing? I know I sound like a religious nut, and by the way, I’m an atheist on a bad day, agnostic on a good day. But this isn’t about blind faith in something I can’t see, this is belief because I’ve seen and read too many stories of nonverbal Autistic kids who do learn to communicate and when they do, everyone is amazed by what they have to say. One day you will be too! Just keep coming back. Just keep talking about it. One of these days you’ll start looking at the links and who knows, one of them might just speak to you, one of them just might say something that makes you stop and wonder. One of them might just remind you of your daughter. And then you’ll start to believe, Angie and you’re life will change. I know. I sound absolutely insane. But just do it. Because as I said before, What have you got to lose?

      • Ariane, I have started reading some of the links you’ve provided. You’re right, I have nothing to lose!

        On a seperate note, I am wondering – has Emma ever had genetic testing, and/or an MRI? Marisa has an appointment tomorrow, at the Munroe Meyer Institute, in the Genetics department. This is where she was initially dx’d, six years ago. At that time, they had recommended some genetic testing – we’ve never had it done. I honestly don’t recall them recommending it. That was right after I lost my brother, the entire time is just a blur. We did try to do an MRI once, but Children’s Hopsital didn’t want to sedate her.

        Anyhow, I believe they’re going to test for things like Rett Syndrome, Fragile X syndrome, and Angelman syndrome. They’re also going to schedule an MRI for her. Was just wondering if Emma has ever had this done?

        • Yay Angie! You go girl! And if you run out of links and/or hope, just let me know, I’ve got dozens more!!
          No, we never had an MRI done. We’ve done tons of QEEGs, but never an MRI. I think at one point we were going to and now I cannot remember why we didn’t. But Rett’s is usually tested with a blood test, I believe, isn’t it? I’m pretty sure we had that done as well as a slew of others.
          Let me know how it goes. I’ll be thinking of you!

          • Thank you. I need good thoughts sent my way!! I think tomorrow will be more of a consultation type visit. She has to be sedated for the MRI, so they will likely do all the bloodwork at that time, as well.

            Back in February, she had to be sedated for dental work. I had them do a bunch of testing on her for things like mercury, heavy metal poisoning, etc. They even did hair follicle tests. It all came back supposedly normal.

            I took those results to a local, homeopathic type place and conferred with them over the results. They wanted to put her on about a zillion supplements, as well as a completely organic diet. They said her cholesterol was low, and she was zinc deficient. They also wanted her on a completely gluten free, totally organic diet. And they wanted her to do “neurofeedback therapy”. (Which isn’t even done by a neurologist, it’s done by an RN)

            Well, NONE of this was covered by insurance – and, money being an issue, we never tried any of it. At the time, I said, I don’t know which is worse. To be told by the traditional doctors that “well, everything is normal, there’s nothing we can do”, or being told by the homeopathic ones that “there’s all sorts of things you can try, but you can’t afford any of it!”

            I was more interested in the diet than anything. If we could afford it, I’d have us all eating all organic, all the time. But it’s just not going to happen. 😦 I also wanted to try probiotics with her for her constipation, and still need to do that.

            I honestly don’t expect them to find anything truly useful, (but who knows, right?) but it’s always a good thing to rule things out. My personal theory about the causes of autism is pretty much environmental. I think we live in a terribly toxic world, and everything the last few generations they’ve put into our food, water, and products has progressively damaged our reproductive systems. I think it’s a crapshoot, and people who have “normal” kids are just lucky.

            Wow, this got long. Sorry! 😉 I’ll for sure let you know how it goes tomorrow.

  7. What a beautiful day Ariane. Something to really cherish. Great idea letting Emma be in control and pick the route. Liam just loves trains and knows all the train lines too and landmarks..He and Mark have even been adventurous and taken what we call the V Line here in Melbourne Victoria which takes you out of the City and to the towns. I think he would adore your Subway. Great that Emmas’s interests are broadening and she is actually ‘seeing’ things around her.
    Angie- I just had to repond to your depsair. I have two kids with ASD. They both go to special school for the intellectually disabled, there is nothing autism specific for them. It is pretty crap really.
    Both children have very different abilities and strengths. It is just the diagnosis that is the same. (Those darn labels hey.)
    I don’t look ahead for hope- for some big leap. I live for now. I talk to my daughter as if she understands everything, even if she does not appear to be listening. Even though Liam tells me “Mum, Roslyn can’t talk!” I wait for responses and now I demand a response of any kind from her, I wait till she indicates some kind of choice as to what she wants even if it is holding up 2 objects and she picks which she will have on her sandwich for lunch. People have to ask her if they can use her stuff- and if she squeals an objection or signs no that is respected. I show her pictures of where we are going, what we are doing, sign to her, talk to her, I am trying to sign to her ( we have a Carer who helps twice a week who signs to her- tells her everything that is happening, acknowledges every response she makes- and Roslyn is opening up more- the more that is expected of her. The bad stuff makes me cry but there is good stuff. Just walking the dog , and allowing her to ride her scooter- she shot on up ahead- finally free- but for once she didn’t run away but went on to the park (with my husband dashing behind) – but I had explained to her if she didn’t run away, if she didnt go into some stranger’s house, or go on the road we could do this again. Sometimes it works sometimes it doesn’t. (on the way home she did dash into the neighbors garage and then refused to leave- not the best way to meet new neighbours) but it was big progress. The steps Roslyn takes are small steps but steps never the less. Different to her brother. I still insist she has school readers and I still read them with her and to me it was a big step that at nearly 12 she was telling me”A” and identifying it and picking out “block” in every sentance. I can’t take your pain away, I can’t give you a cure. For me it has taken a long time to be able to just see my children for who they are and feel that that is okay, to respect that. Not to give up. Little steps. I hope I haven’t offended you. I wish there was some way to help.

    • Liz – thank you for writing this. I always feel such gratitude when you write and it helps me. There are so many of us, we are all doing the best we can, but I feel better knowing I’m not alone. I loved when you said, “I don’t look ahead for hope – for some big leap. I live for now.” Yes. That’s it, exactly.

  8. Thanks Ariane I love following your posts and I love hearing about Emma’s progress they are my favourites of everything you write. What am I going to do if one day Emma tells Mommy to stop writing about her? I really enjoy my little Emma fix. Emma lifts me up.
    I just wish I was a better typist- I need an edit button because I always see my mistakes after I post them and want to go back and correct them. I meant to type that both children have very different abilities and strengths.- It is just the diagnosis that is the same. (those gosh darn labels hey)

    • Ah, but I DO have an edit button, just went in and did a quick one as per above comment. Tell me if it’s right. Easy to amend! Also you can always email me with corrections and I’ll make them.
      That is so nice of you to say about the blog. Who knows, maybe Em will want to write some posts of her own one day!!

  9. What an awesome day you had with Emma! I cannot tell you how helpful it is to read your blog and all of the comments. It does make me feel that I am not alone. I have the same fears…that Olivia is not connecting or understanding, that she will never have a conversation with me etc etc…there are so many ups and downs and I am trying to live in the moment now and not project about the future as you suggest. My daughter is only 3 and does have a bunch of words now so I am hopeful that she will continue to progress with verbal skills but the connecting with other people concerns me so I was happy to read this:
    “I absolutely KNOW that just because a child is nonverbal does not mean they are not intelligent. Just because they may not look at you, does not mean they don’t SEE you. Just because they do not answer does not mean they don’t WANT to. Just because they appear unable to understand does not mean they do not.”
    We went to the zoo in Boston yesterday and Olivia was repeating the names of all of the animals and even rode the carousel! I look forward to reading about more of your adventures with Emma and thank you again!!

  10. Beautiful. Sometimes we go for long rides and our son chooses the roads. He loves that, too!

  11. How wonderful. You give me hope for the future. My son doesn’t speak much right now, and I’m DYING to find out what’s going on in that beautiful brain of his. Sounds like you’ve got a bright young lady on your hands.

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