A First Day And Life Continues..

Bounce, bounce, twirl!  Bounce, bounce, twirl!  I’d provide a visual, but I don’t have one, so you’re going to have to take my word for it…

Yesterday was Emma’s first day at her new school.  Emma was scared and anxious.  I was scared and anxious.  Every time I tried to do the breathing exercises we’ve been practicing, Emma begged me to stop, “No Mommy.  I don’t want to do breaths!”  So I did them quietly to myself hoping she wouldn’t notice.  We did exactly what we planned.  I took her to school.  I brought her up to her classroom where she joined three other children, two non-speaking and one verbal.  I stayed with her longer than I should have, but seated across the room out of her line of vision.  Her head teacher, who’s been teaching for more than ten years, and special ed for six of those ten, was kind, respectful yet reassuringly authoritative without seeming intimidating.  I set the timer for three minutes, gave it to Em and told her I’d leave when the timer went off.  She said, “Go sit with other kids when Mommy leaves” and I cursed myself for not having set the timer for 10 seconds, at the same time congratulating myself that I hadn’t set it for 10 minutes.  But that was the kind of day it was.  A day of juggling opposites.  Emma’s favorite book kept up a steady patter in my head…  Matman stands, matman sits, let’s say opposites!  Staaaaaannnndddd!   Siiiiittttt!  Staaaaaannnnndddd!  Siiiittttt!

And in between matman’s curious chant, I watched and listened.  I could see Emma relaxing.  I could see her watching.  She began to join in.  The timer beeped, I stood up, Emma walked over to the table to join her peers, just as we’d mapped out and I left.  When I returned to have lunch with her she was happy and laughing.  As we sat in the cafeteria with her teacher, aides and other kids I mentioned the “letter” I’d written.  I said, “I hope you didn’t feel it was condescending, I didn’t mean it…” and one of the teacher’s aides interrupted me and said, “Not at all!”  She then went on to tell me she’d gotten out a highlighter and made notes.  She and the head teacher reassured me that they appreciated it and credited it with the success of Emma’s first day.  I was relieved and grateful for their kindness.  When Emma was finished with lunch, she turned to me and said, “Go with Mommy to the big carousel?”  This was what I’d promised and I nodded yes.  As we got up to leave, Emma turned, said, “good-bye” and then said each person’s name and blew each a kiss (the ultimate compliment from Emma and not something she usually does.)  It was all I could do not to openly weep with relief.

There’s a great deal of talk about us parents.  How we feel, what we think, our emotional state, our perceptions, our understanding of events as they occur, what we think our child may or may not be feeling, thinking, understanding.  All of it is through the filter of our own experiences, what we’ve learned or been taught.  It takes a leap to realize what we think we know or believe may be incorrect.  That’s a hard concept to digest.  It’s taken me eight years and there will always be more for me to learn and understand, I’m still very much at the beginning of this journey.  This fall will mark eight years since Em’s diagnosis.  Eight years ago when I believed I knew things about my daughter, only to learn how very wrong I was.

I think I understand and then find I really don’t.  I don’t “own” Emma, she isn’t “mine” in the sense that she is not my possession.  She is a being in her own right, with her own ideas, opinions and thoughts.  I have ideas about what constitutes a quality of life, I have opinions about other people I meet, I view their lives through the lens of my life, my hopes and dreams.  It’s easy to fall into the idea that my views are the correct views, but I know how often I am incorrect.

I began this blog to record Emma’s journey, but have found I am increasingly uncomfortable making the assumptions necessary to actually do that.  In recent months I see this more accurately as a record of my journey.  I find myself not wanting to talk about Emma as much and when I do, I ask myself is she okay with what I’m writing?  I have her photo splattered all over the internet and while I am perfectly fine divulging the gory, messy details of my past in a public way, I haven’t given Emma the choice.  I’ve just done it.  I don’t know where to go from here.  Just because she often cannot communicate her ideas and opinions doesn’t mean she doesn’t have any.  I know now how incorrect this assumption is.  I’ve asked her about this blog.  I’ve shown it to her.  A few times she’s asked me to read her a post I’ve written.  I’ve asked her which photo is okay to post, but just because she points to one, doesn’t necessarily mean it’s okay.  It’s a dilemma and one I am not clear on, though increasingly I’m uncomfortable with the choices I’ve made.

Someone once said to me, “We give birth, the umbilical cord is cut and from that moment until we die our job is to learn how to let go.”  The timer hasn’t beeped yet, but I know it’s ticking.

Chalk Art on 7th Avenue – “Happiness”

“Step Inside”

44 responses to “A First Day And Life Continues..

  1. This is lovely to read. I’m so glad it went well. I do understand your conflicted feelings. You’ll figure it out. I have faith in you.

  2. I couldn’t wait to read about Emma’s first day. I am thrilled that it went so successfully especially knowing the level of anxiety you were both experiencing. Yeah! xoxo Jill

  3. I have experienced similar concerns regarding ‘whose’ story I am telling, and whether I have the right to display my children’s lives so publicly. (especially since Lauren knows she has autism now)

  4. Am so happy her first day went so well. Risa is still having a tough time adjusting, and it’s not even a new school or classroom for her. 😦

    • I’m sorry to hear that Angie. Transitions are hard and frightening. I’m thinking of you both.

      • I got a note from her teacher on Friday saying we need to schedule a meeting to discuss the whole aggression issue. 😦 I don’t know what they expect us to do any differently!

        • This is one of the most frustrating situations we encountered with Emma’s old school. They would call us about her “behavior” and ask us what we thought they should do. This sets up an impossible situation because as her parent who is not present when these “behaviors” occur it’s impossible to know what is really going on, what might be triggering the behaviors, and therefore how best to deal with them. Whatever we may advise will be a shot in the dark.
          The one thing I can say is that Marisa is attempting, in the only way she knows, to communicate her upset and distress. What, specifically, that means is almost impossible to determine. But clearly this is not a good situation. I’m so sorry Angie. We went through this off and on for a couple of years at Em’s old school. It was an impossible situation and extremely frustrating and painful.
          Any luck contacting Syracuse University regarding FC? When Marisa is able to communicate better she will be able to help you help her better. But this will take time, I’m afraid. Hang in there. Take things a day at a time. Try not to go into future thinking. Try as best you can to stay present. Sending hugs and support from afar.

          • I have been on the Syracuse website. I am working with her, with the keyboard on her Alt Chat. Right now, she doesn’t know her letters at all, so it seems kind of a waste to try to do the FC. I’d be very happy just to get her to communicate better with the Alt Chat.

            This morning, she got irate with me while I was brushing her teeth. I asked her if they hurt, she shook her head no. Today is Monday, when they get out early. I’ll pick them up because she has therapy, I’m sure her teacher will talk to me then.

            The thing I’m scared about is the violent behavoir getting worse since she doesn’t have words to communicate what it is that’s making her upset. 😦

            I am truly reaching a mental breaking point. Her birthday is coming up, which is always hard for me. She’ll be ten. Ariane, she has not changed hardly a bit since being diagnosed nearly seven years ago. (Aside from being potty trained now, which is just recent.) And I honestly don’t know how much more I can take. Most parents’ biggest fear is that they’ll lose their child somehow. My biggest fear is that she’ll have to live this way for the next 50 or 60 years, without us around to care for her someday. 😦

            It’s also starting to really affect her younger brother. I don’t write much about Jesse here, but he is an awesome kid. He’s seven, biologically younger but very much the “big brother” in every way. He looks out for his sister. He loves her, is devoted to her, will answer questions about her, explain to people why she doesn’t talk, etc.

            Her increasing aggression is really starting to frighten him. He has a classmate with a sibling in Risa’s class. This boy just got pushed down the steps by his autistic brother, and had to have stitches. Now Jesse is scared his sister might actually hurt him, and it’s not like I can say with confidence that that could NEVER happen, kwim? The poor kid doesn’t even feel safe. And I worry about him getting picked on in the future because of her.

            I’m just so effing frustrated. I don’t know what to do anymore. If I had a trusted relative willing to take her, I think I would actually be willing to let her live elsewhere. That’s how bad it’s gotten.

            Please don’t think less of me for writing all this, Ariane. It’s so much harder to find a place of hope for me. If Marisa were where Emma is….my God, I would be over the moon. I would be full of hope. I would. Sadly, it doesn’t look like she’s ever going to get there. I’m pretty much convinced at this point she’ll never speak. I don’t want to give up, but….ten years is a long time. 😦

  5. Ariane, I have heard you worry before about what Emma will think or does think about this blog. Here’s what I think: The subhead of Emma’s Hope Book is Autism: Our Journey. When Emma was diagnosed, we didn’t have a clue what autism was, what it meant, to us as a family, to Emma, to all the other kids and adults who are autistic. Eight years later we have more of a clue, clue being the operative word. We are learning and will continue to learn — that is a big part of Our Journey. Another key consideration is the word, “Our”. You started this blog and have written the vast majority of posts, but it has never been solely about you or even solely about Emma. Your original intention was to chronicle Emma’s progress for our friends and family, so if they were interested in knowing what was going on, they could easily get the latest news. As time progressed, the circle of “Our” has increased, with many more friends and families taking part in the discussion and sharing their journeys.

    Like yourself, I can sometimes be a TMI guy. My own blog is so “warts and all” that I might as well put up toad wallpaper. Like you, I worry that Nic and Emma might be embarrassed by my sordid past. I even asked Nic what he thought. His reply, “do what you have to do Dad.” Sometimes the truth isn’t pretty, and everyone always walks a fine line when they bring other people into the “honest conversation”. Someday, Emma might say she is pissed by the things we have both said about her here. Or she might feel good that Our story helped some other people learn from our mistakes and successes and make their own journey just a little bit easier. If I had to guess, I’d say that Emma will be pleased that you are helping connect autistic children and their parents with autistic adults, who know better than us, better than anyone, what the journey of autism is all about. These are her peeps. Just like her NT friends are her peeps. Like we are her peeps.

    Our family is growing. Every day it gets bigger. Every day there is more love and connection. Yes, we can never own another person. Sometimes I wonder if we can even “own” ourselves. That would imply we are solitary beings, completely independent and disconnected from everything and everyone else. As the Buddha said, “No separate self.”

    Autism: Our Journey.


    We are fam-i-ly. Get up ev’rybody and Sing!


  6. This is a topic I have been working my way through a lot lately as well. One thing I have to say is I am a better parent for my ASD child since I have been blogging. I am learning and getting feedback that simply makes me better at parenting him then I was before. But, I am trying to draw some stricter lines on what I can only guess he would want in terms of privacy. My blog is anonymous, I don’t tell anyone in my real life that I do it. But, if anyone from real life stumbled across it they would recognize it instantly as our family and that has happened so far with one person who has let me know they found it and luckily she is very respectful of my privacy. I have gone back and taken a few posts down that I thought better of.. There are a few things going on these days that I would love to talk about but have decided if I were him I would not want them shared. But, again I am only guessing. It’s a fine line, would love to hear about anything you decide on this.

    • I thought of a post you wrote a few weeks back when I was writing this. It resonated, still does. It’s hard. But someone clarified this for me a couple hours ago. She said there’s a difference between keeping it about yourself and your feelings and reactions to things, and suggesting or stating that you know how someone else feels or thinks and then talking about that. I found that helpful and it made me feel better.

  7. Beautiful words, Richard. Thank you 🙂

  8. Hooray for a good first day!

    I have to admit that when I first discovered blogs by parents I had some reservations about how the children whose lives were being chronicled might feel. But as I’ve read more, I’m increasingly getting the sense that these blogs are chronicles of the love you have for your child and that some day, when Em is grown up, she’ll have a wonderful record of her early years and of how much her parents cared about her growth and happiness.

  9. I think your entry is beautiful. It is so true that as parents we think we know our children but what we really do is make assumptions based on ourselves. I admire your candor and seeking spirit.

  10. I know of someone who is autistic and doesn’t want anyone to know. This person is a teenager and in a regular school now, so has come a long way. But there is still a long way to go, and for him/her I hope that one day realizing it’s o.k. to be the way you are, to be you, is the best in the long run. It may be hard for Emma to accept at first that so many of us are posting about autism, about her in particular, but as she grows more discerning she will realize that we are learning as much, maybe more, than she, and the love that accompanies is growing as well, all of which points down that street drawing for happiness and an arrow that you posted.

    Even at my age, when I thought I knew EVERYTHING, and of course all of you children, grandchildren thought i did too, (ha,ha) the realization that there is so much more out there to learn about the cosmos, the world we live in, NTs, autistics, and, yes, even ourselves comes as a shock/surprise/relief. So here’s to life-long learning, understanding, changing, and happiness!


  11. Richard put it eloquently. No blogs when I grew up (a lie, as I continue to grow) but my mother could embarrass the hell out of me, and I’d love her none-the-less. It is a journey best shared. Thank you for sharing.

  12. I love your post… but not your Post Cereal!
    I also love you and ‘Yote… but not you messy food-fighty pea-flinging, ladelly ways. It would also be highly irresponsible of me to deny you the opportunity to clean your own mess. However – I am happy to help clean up my share if you would kindly time your across the ocean twitter-vittles-catapulting for a time when I can play as well!

    • Oh there you are. You have every right to scold us of course… though I must tell you, you and old ‘yote here put a smile on my face when I wasn’t feeling very smiley the other day. Thank you for that. And our virtual food fight, did help, even though the timing of it was dreadful!

  13. I haven’t read any one elses comments- but will later as it is the weekend here and it is always busy with the children. I just wanted to let you know I am so relieved it went well for Emma on her first day. I have been thinking of her and how it was all going each night at bedtime I would think Emmas first day at new school is starting, her scecond day. How is she doing is she happy right now?. I understand how you feel about Emma’s privacy. Earlier this year we did a newspaper article in relation to a school we have been campaigning for. In the past it has mainly been local papers and never directly about my children.This one was quite personal and before it came out in print I panicked thinking what an earth have I done letting reporters into my home and photographer basically sharing my childrens personal details with the world. Frankly I wasn’t happy about some of the deails the journalist wrote when she quoted Liam..With your blog you at least can choose how much to share- I do understand if you decide to make the focus more about your own journey ( which a lot of it has been) and less of Emma. I think you have always written very repectfully about your family. So very gold school went well

    • Thank you so much Liz. Yes, having someone else write about you and your family – I don’t think I’d like that at all. I don’t know that there’s an easy answer, just something I am glad to be aware of. There was a long time when I wasn’t.

  14. Now, if you two can settle down for a moment, how ’bout a comment on your wonderful post…

    I am so pleased that your and Emma’s first day was positive. Your letter gave insight into ways to support and understand Em’s experience with a depth and detail that it would take any school much longer to learn for itself.
    Those supports are what bring success – the trick can be to remember to continue to provide those kinds of supports for children – or adults – when we start to see they are doing well. There can be an inclination to assume: “Ahhh… good. That has been accomplished!” and then check it off the list and withdraw the support.

    I know that H is doing well because he is gaining skills and understanding – but he also thrives because of the supports we provide. Still – I sometimes have to fight the impulse to pull back supports too quickly. I have noticed that schools can do this as well… I don’t have all the answers by any means – but I do try to be mindful of this.

    And about sharing your journey… I too ponder those big questions. I don’t share private details… but I still wonder. I try to read my blog from H’s perspective – and his adult perspective – and even his future partner’s perspective. It is a useful lens… to hold up… through which to view my posts.
    It haunts me though, in a forward thinking way, because of course I cannot really know…

    • Leah, this is such a good point. Yes, that idea that things are learned and so let’s push ahead while removing the very supports that have made that progress possible. This is something I need to remember in my own work with Em. Because I can be very impatient and forget that of course those supports are what got her to the next level. Better to err on the side of caution than set her up to fail because the things she might still need have been removed.
      We’ve talked about the issue of privacy and our children. It’s an ongoing dialogue, one I hope Emma will be able to join me in having one day.

  15. I am so happy the “first” was successful and over! When “my” Emma began communicating a few years ago I began to experience what I believe you are describing in your blog now. Before Emma could communicate I was her “voice”. Emma has her voice now. She still needs guidance, but her voice is loud and clear, whether she writes, types or is beginning to speak it. She also can explain what her behavior means and what it meant before she could communicate with us.
    For 18 years I thought for two people. Now I have to remind myself still to only think for one and ASK Emma. It’s been 2 years I still make huge mistakes. It is still new to her as well and she will stop at times to mention, “mom, you never asked me that before”.
    Separating is something I never imagined I would ever experience. The issues may be different, but emotionally I now recognize the same feelings as those I have had with her older brother. What a miracle….what pain.
    I wonder if the icky feeling you had when you changed the perspective of the letter to Emma’s teacher was not also the same ick I feel at times.
    In all the junk we get as parents when we get the “talk” about what autism means, no one ever bothers to say “Your daughter is a person. she has feelings, thoughts, etc.
    Ariane, your blog does that for parents. I appreciate that.
    Now, after I show “my” Emma I wrote this, I will go back under the radar……

    • Paige, I hadn’t thought of it this way until I read your comment. Yes, I think as Emma matures and becomes more and more verbal, it becomes increasingly difficult for me to justify “speaking” for her. Often I will start to say something in front of Emma about Emma and will stop myself and say, well, wait, let me ask Emma. Old bad habits, but it’s good to let them go. I love that Emma says to you, “mom, you never asked me that before”. How wonderful is that!
      And I also really loved this – “In all the junk we get as parents when we get the “talk” about what autism means, no one ever bothers to say “Your daughter is a person. she has feelings, thoughts, etc.”
      THAT is what has to change!
      Thanks so much for sharing your thoughts, Paige. I always get so much out of what you say.
      *Hi Emma!!

  16. Thank you for sharing your story. Through your blog I’ve learned so much about my 5 year old son, who is mostly non-verbal due to cerebral palsy. There is an innate need to communicate in everyone, and if something doesn’t get expressed verbally then it comes out in other ways. My son sometimes grabs and pinches (hard) and laughs hysterically as a way to interact. Until I read your blog I thought we were the only ones experiencing this! We just got an iPad for him to use at home and in kindergarten and he is starting to communicate with it. You are trailblazing for many people with your posts about your life and the concept of neurodiversity. Thank you!

  17. I vacillate between public disclosure and privacy. And recently because my child started a new preschool where the director felt there was no reason to disclose, I am swinging back toward privacy at least for now. I have indeed been thinking about how much do I share, versus respecting my child’s privacy. I understand parents who decide either way. Because if it weren’t for blogs like this and others as honest and revealing, I’d think I was the only headcase when it comes to my child being autistic. Because of blogs like this I went from carefully saying “have autism” to “autistic” and I am more embracing of my child in all his glory and I tell you this child is glorious and it doesn’t mean we aren’t going to struggle but I’m so much happier as a parent because I’m *done* with the old mindset I had when I didn’t know how I was supposed to think about this if I were a “good” parent.

    Anyway… sometimes I feel like I’m the only parent t who feels the way I do and because of you and Richard, I feel braver.

    • Jane – thanks so much for this. Sometimes it feels like I’m swimming in a vast body of water in the dark without knowing where I’m headed or when I’ll find some light to let me know where I am. Glad our story has made you feel less alone, because none of us are, but sometimes it’s hard to remember that.

  18. I have asked my daughters, one adopted and one with ASD, who they feel about my telling their story. Although they seem to not care I think they are just trying to please me. My daughter with ASD says she is not “special” she is just herself. I am inclined to agree now that she is almost ten. Thank you though for your posts that defend our children. That point out how over sensitive and empathetic they are. They worry about little animals, babies and homeless people more than any NT children I encounter. They carry the weight of the emotional world on their shoulders.

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