Lots of Questions and The Journey Continues

I haven’t been sleeping well.  I’m having nightmares.  I’m waking at 2:00 and 3:00 AM, unable to go back to sleep.  I am worrying.  I feel I shouldn’t be.  But I am.  The lack of sleep doesn’t help my worrying, it exacerbates it.  There are a couple of things going on that are causing this.  I am not managing the work/writing balance.  I need to work.  I don’t have a choice.  I also like what I do. So there’s that.  And I need to figure out how to balance work better.

Then there’s this…  my writing, this blog and autism.  Specifically my growing discomfort in writing about Emma, without Emma.  More and more I try to keep my writing about my own issues and how they weigh on my responses and reactions, but even so, I end up writing about her.  I asked Emma the other day, “Hey Em.  Does it bother you that I write about you?”  “Nyeah,” she said, which is her way of saying No.  It sounds like knee-yeah when she says it and she scrunches her face up and smiles while shaking her head from side to side.  “Okay, but do you know that lots and lots of people read the blog every day?  Not just family or people we know,” I continued.  She looked at me, nodded her head up and down and grinned.  “Do you care that I put photos of you on it?”  “Nyeah,” she said again.

I asked Nic what his feelings were.  Without hesitation he said he wasn’t comfortable being written about or having his photo on the blog or Facebook or anywhere else.  So Em tells me she doesn’t care or mind, but Nic certainly does and I can’t get rid of my anxiety.  I didn’t do what so many bloggers have done.  I never made my family anonymous while keeping our whereabouts a mystery.  It never occurred to me to do that.  I started this blog as a way of documenting Emma’s progress.  That original concept has changed over the years.  I don’t know how to keep writing about “our journey” without “all of us” writing it.  Nic has no interest and whenever I have asked Emma if she’d like to write something, she’s declined.  The truth is the blog has become “my journey”.  I have moved away from feeling sad about my family and am now in a place of contentment.  I feel tremendously lucky.  I feel incredibly grateful for my two children and my husband and the life we have together.  I no longer delineate one child from the other.  I don’t see one as one thing and the other as something else.

We often talk about our children as though they grow up in a vacuum.  We express shock when children bully each other and make schools accountable and yet our children are being raised in a culture where adults bully all the time.  We are a culture of bullies.  Of course bullying is a problem in schools, how could it not be?  Look at the adults they see, hear and watch on TV and in the movies.  They are surrounded by bullies, even bullied by those adults and yet we are horrified and shake our heads and wonder how this could happen?  How could it NOT happen?  Parents have strong opinions about race, sexuality and difference and their children often adopt similar beliefs.  We want tolerance?  We must begin with ourselves.  We want to stop bullying?  We must look to our own behaviors first.

So I ask myself:  Am I contributing to a culture that thrives on putting others down?  Do I do and/or say things to make people feel badly about themselves?  Do I gossip?  Am I judgmental?  Do I engage in disrespectful conversations about those I do not agree with?  Am I more interested in making my point than hearing another’s?  What sort of person do I model for my children?  I believe in tolerance, embracing difference, being of service, acceptance, but do my actions mimic my beliefs?  Do I believe that what I believe is the “truth”?  Do I consider those who disagree as inferior?  I know I am guilty of all these things at least on occasion and a few more than occasionally.

I have an ideal for myself, it is a kind of end goal, the person I strive to be, but know I will never achieve.  As long as I keep traveling toward my ideal I will have lived a good life, or, at the very least, a better life than if I don’t.  I know I won’t do any of this perfectly, but I can keep trying.  I can keep holding myself accountable.  When I make mistakes I can admit them, make amends and do all that I can to try and make the necessary changes so I won’t repeat myself.  I don’t know what the answer is to my questions and discomfort.  But I’ll keep looking, asking and being aware of how I feel.  Once I’ve figured it out, who knows? But until then I’ll keep writing about it.  After all, this blog is less Emma’s Hope Book and more “A Journey.”

New York City – Built as a Courthouse in 1874-1877, later used as a Public Library this clock tower remains standing 

44 responses to “Lots of Questions and The Journey Continues

  1. Maybe it’s just time for a blog name change, to recognize its “evolution.”

    • It’s funny how someone can say something that upon reading seems obvious, yet until I read this from you wasn’t obvious to me at all. Yes, I think maybe it is time! Thank you so much for writing this!!

  2. “Walk in my moccasins for a moon” some very wise Native American said a long, long time ago. Maybe you need to walk in your own moccasins for a moon (month)? You’ve been walking in Emma’s for a long time, and now, as Sherron said, it’s time for a change. Evolutionary change. I so agree.

    With love,

    Mom

  3. Chou Chou Scantlin

    Hmmmm…Funny, I always considered this blog YOUR journey, and Emma as being your inspiration and muse. Your advocacy, the interview, and your opinion are such an inspiring example of how one person and do so much good. ANY opinion is bound to offend someone. Do what you do, as you can, but, my goodness, take care of your life, your work, and all your other priorities! We will all support your slower pace. A lot of us must slow our own pace to function well, remember:)
    There is a wonderful trick I learned in acting, that helps with the bully issue. Sometime you have to perform a love seen with someone onstage who is really disagreeable or rather repulsive. What you do is find something you can love passionately about them, even if it is just their eyelashes. You forget about all the rest, and make passionate love to those eyelashes. As long as you can find the eyelashes in anyone, or any situation, you can forgive the rest, and you can give them honest love, even if you don’t like them, or they hurt you. You are a loving person, who wants to protect those you love. You should find much peace of mind in this, and sleep well. Find the eyelashes, and everything else will sort itself out. I know you know this already, in different words, but sometimes it’s good to have friends to help remind you of such things ❤

    • Chou Chou I love the eyelashes story. “Find the eyelashes, and everything else will sort itself out.” That’s beautiful.

      Have you seen the video of the young Autistic girl playing the piano and singing a duet with Katy Perry? http://www.youtube.com/watch?v=QX-xToQI34I Don’t love the predictable lead-in, but if you skip to the actual performance it’s pretty fabulous and I thought of you and then I thought of Emma too. It’s my secret (now not so secret) fantasy, that Em and you will meet and one day sing together!
      💚💚💚

      • Chou Chou Scantlin

        Yes, in fact, I tweeted it, and surely thought of Emma. I also have that fantasy of singing with Emma:) There is a song I wrote, a children’s song, that some musicians have been pushing me to record. I love it, but do tend to resist recording, as I perform for the audience connection, but I will move forward with it, as my schedule allows. Perhaps it will be our song. 🌟

  4. Chou Chou Scantlin

    I meant interviews… All of them! XO!

  5. I have the utmost respect for you and your family. From Monday to Friday I look forward to reading your blog. You have reached many with your growth in self awareness–something Emma would hope for. You and your family are Emmas hope. But with growth also comes change. And I see from you, a positive change and a passionate supporter of a much needed change in societal thought. I am intrigued with a title change (that was an immediate thought of mine as well.)

    As for balance: don’t forget fun. Part of supporting possitivity is enjoyment. Doesn’t make sense to get worked up ; ) as that is counter productive.

    Walking the walk and living to enjoy. ‘Yote

  6. I completely understand; I vacillate between disclosure and confidentiality too, and doubt keeps me awake until the wee hours of the morning. As much as I try, I cannot compartmentalize my experience of the journey from all the stakeholders creating and supporting my experience. This means I’m providing a glimpse to my relationship with my spouse, my relationship with my child, and information about their personalities.

    I never got a sense of you putting others down; I see you as providing a position that is still rare and unusual among parents who hold similar views about “how to see” the journey of autism, or accurately, living with autistic experience when we do not have personal access to an autistic experience and therefore handicapped with misinformation, prejudice, and fear that we have gained through society’s messages. I’m sure that I have written things that are more about me than about my child, but because my child is part of my experience, he may interpret this is being about him.

    And honestly, the only person who matters at the end, whose judgment I care the most, is my child’s.

    I’m considering creating annotations to my writings, the way I’d write in the margin to have conversations with either myself-as-next-reader or with the next reader. Only the next reader is my child. I’d go to the places that make me cringe, and explain to him where I was emotionally and what I was feeling, why I wrote that, and whether I have new insight that has made me change my mind. My history does not have to become my child’s present and future: my history is evidence of my growth and a big box of mistakes and failings, and to be taken exactly as “mine”. That’s what I hope to do: to separate my history from anything about my child’s identity.

    I don’t know if it’s going to work.

  7. Wow! I know what it’s like to sit up at night wondering ” I’m I getting it right.”
    I don’t even know if what I’m about to say will be more helpful or will it leave you still wondering.
    Your blog is wonderful. You blog from a place in your heart that is genuine. You are not doing anything deliberately to hurt Emma. You are in my opinion making a choice to make your journey as a mother public. This is the hard part of the choice you have made around how you have chosen to spread awareness. Some slap on a bumper sticker, wear a pin, buy blue lights for in front of their homes or go on big hikes. Yep some get tattoos, some bike, some write a book. Some make Facebook pages, some wear t-shirts. Some will voulenteer at the local Autism chapter or at the children’s hospital. Some will choose a bunch of things to do. Some will blog.
    Why is blogs are important? It’s important for some parents to find information and a place to express their opinion. To talk about their walk through life with others means they are not alone. There’s a feeling of aloneness that is almost overwhelming when you find your self on your autism journey. If you are Autistic your need to have your voice be heard is a whole other passion then if you are a parent of a child with autism. So the blogs written by autistic parents are extremely unique.
    When my Childern were diagnosed I only had friends who had Nerotypical kids. As I went though the parent bullying I felt so alone. If I had known that the things I was experiencing was normal, I would have felt better. So this is why blogs are important to me anyway. I admire a lot of you who do blog your parent journey because it takes guts. To let someone peep into your life is a big deal. I’m feel sometimes like a peeping Tom when I read some blogs lol. Yep they are that detailed. What I love is that you have asked Emma. Most people would say ” it’s my kid. I’ll do what I want!” that’s clearly not you.
    I’m wondering if you feel your taking her privacy away? Is that it. Well, think of it this way. People do reality shows right. Well this is you doing the same thing just in print. Emma is now kinda a star. In a way anyway, mostly to your readers anyway. If you had a poor readership or following then Emma would be less famous. Um that was the part I hope you didn’t take bad. The she maybe now famous part. How we treat stars is a whole problem.
    ” I hate her/him!” ” did you see what she/ he wore. That’s ugly” . Yep we bully the famous. We start out thinking their hot and when we are done with them their not. We take, we take parts of them we have no right to take. So if your worried about Emma then yes this is a good worry. But here is the thing about blogging you get to control what you let someone take from you. I can’t see you. I can only read. So what you give me is all I have. If someone is going to hurt you or your family with what you blog then they would have hurt you regardless of what you blogged. That’s the thing about bullies. I have often said that bullies learn it from their parents and to stop childern from bulling you have to stop adults from bulling. Everything you wrote about gossiping is true. It’s the biggest part of bullying. It often starts there but often doesn’t end there. I’m going to say mothers but it can be men too are the biggest teachers of bullying to their kids. Ever go to a play group or a gathering with a bunch of moms. You know what kind of kids they will be growing up if they just can’t stop gossiping about one another. If everytime one lady isn’t there, they start talking about her, then the kids they are going to have will be doing it to. We teach by our behavour (ABA and behavour management 101) I’ve sat with the Hurd as they judge each mom about their parenting. It’s a behavour we choose. We can choose not to. This is where I’m in my faith I’m choosing not to. I’m choosing not to be a bully or at least I’m trying my best not to be. I’m refusing to keep friends who take other people’s self esteem down. If someone knows my kids have ASD and are coming to take their self esteem down then they are not welcome in my life period. I have droped friendships based on this type of bullying. So if someone knows about Emma and would criticize you, your husband, your son, or even Emma then they may be a bully anyway. You can disagree with someone and not bully. We disagree all the time on your blog. I hope I have not made you feel like you were bullied. That would hurt me. Last thought other bloggers bullying other bloggers. If you can’t say it on their blog cause they would tear you a new one then may I suggest you don’t blog it. Why be a drama queen/king. Say it where the person can see and defend it. Dont blog hurtful remarks or gossip about anyone. That’s bullying. That’s cyber bullying. Cyber bullying needs to stop.

    • I wish I could go through your comment with a little pen and insert comments! I have never, ever felt bullied on this blog by anyone, but especially not you and I know we don’t always agree. I am so grateful that 99% of the comments are respectful and kind even when people don’t agree and even when they don’t agree on hot button topics. I laughed with my husband a couple of weeks ago (when someone wrote they didn’t agree with me) that I don’t even agree with me all the time! I have learned so much from the people who are willing to share their points of view.

      Thank you for your humor. You are funny! 😀 And I’m pretty sure Em would really love being a “super star”. She loves an audience and applause and the bright lights. If she could, I think she’d live on a stage with a microphone in her hand!

  8. This is a place where the name change might be the truth and ease your misgivings. ((((((Ariane)))))). You are lovely and while as your friend I never want to see you in any kind of pain, as a fellow human I notice that your pain is caused by fine moral discernment and what you can do with your mind makes me able to trust people a little more again. Love you.

    • ((((Ib))))) Will find you later today. Thank you for this loving comment. I know people can be awful, especially people who are scared and unhappy. But Richard tells me MORE people are kind, so I’m going to believe him.

  9. I love your blog…..you have helped me grow in so many ways. I know you will make the best choice for your family and find peace. You have a gift and I hope you will continue to share your thoughts with us in whatever forum you chose…..blessings-

  10. Maybe your blog could be less about Emma, and more about advocating for ALL people on the spectrum – that’s what it’s sort’ve evolved into lately, anyhow!

    If I come up with a good name, I’ll be sure to let you know. Risa’s IEP meeting is this afternoon, I’ll let you know how that goes, as well!
    xoxo

    • I just wanted to say I agree with all the comments but I don’t think a name change is nessary. You barely talk about Emma and when you do your very respectful of her. Your blog is more about advacatecy and the spectrum in general. You only talk about Emma as a way to talk about your feelings on many topics. How could I answer your blog without talking about my kids. Would you want your readers to feel uncomfortable answering based on their life experience? If you are uncomfortable then wouldn’t I be uncomfortable. It’s your comfort really. But I was put at ease right from the start because of your openness. Maybe others would want people who are part of the 1 in 88 to be silent and ashamed. They’re maybe people who would rather the families hide. Stay in the background as to not show the world who we are. Mostly cause it challenges them on who they are. Never change my dear. Unless you want to. Not because someone makes you feel you should anyway. I love you and your blog because your journey is your own and you own it. It’s wonderful. Name and all.

      • Yeah only if the name change eases your nights. Emma is totally telling the truth that she’s OK with being famous. I mean, we are talking about Emma here. When you are presuming her competence and respecting her preferences you’re also believing her, right? Though I don’t thing she would hate it if you went with Emma’s Star Book or Emma’s Fan Club. Nic has different preferences. Like everyone. xx

        • Chou Chou Scantlin

          love the Emma’s Star Book, Ibby! But I still love Emma’s Hope Book. I was thinking the same thing. I can’t see Emma having any trouble with the exposure 👏

        • “Emma is a Rock Star” or maybe “Starring Emma…” and I’d need to get a confetti app that continuously rains colored sparkles..

          • *Loving* the sparkles!!

            • Chou Chou Scantlin

              Oh! Like my FB cover shot! Mine’s actual confetti at the Rainbow Room on New Year’s Eve, taken while sitting on the piano onstage, after singing Auld Lang Syne, and before the Conga line:) Great comments here today! I wish everyone MUCH confetti!

        • I think Ib has made a great point – “when you are presuming her competence and respecting her preferences you’re also believing her”. If Emma says it’s okay with her, then it is. To think otherwise seems to be slipping sideways into the idea that Emma can’t know her own mind, or can’t understand what she’s agreeing to.

          I commented on a similar post on Outrunning the Storm a little while ago, and my thoughts then (as now) is that it’s very difficult in a family to separate out what is “your” story and what is “mine”, because the events are often the same. Sometimes the only thing that distinguishes between yours and mine is our internal experience of the story. Protecting family is important, but it is equally important to tell our own story, even where it intersects with others’. I don’t have any concerns about the way you tell yours, Ariane. As many other commenters have said, you are always respectful and conscious of the impact of your blogging, and that goes a long way.

          As for the blog name… my 2 cents is that you are still the guardian/curator of Emma’s hope in all sorts of ways. You are working here and in your family life to create the ‘space’ for her to have hope and to have the freedom to shape her future as she wants.

    • Oh Angie, good luck at Risa’s meeting. I am eager to hear. XXX

      • The meeting was actually pretty uneventful. Nothing much is really changing, we talked mostly about her communication options, and about using more sign language since she seems to be doing that alot lately.

        She hasn’t “met” any of her goals but has made progress on all of them. And her aggression seems to be getting much better. She’s been sitting better through opening and worktub time, and transitioning easier. All in all, it wasn’t bad. And no, she wasn’t there – she was at Grandma’s playing legos with her brother. 😉

        The parents in the school district are actually starting an ASD support group that will meet once a month. I’m pretty excited about that!!

  11. 1funmum – sending love right back to you. XXX

  12. I can so relate to your struggles as a blogger i too have to think twice about the stuff i write.

  13. Our personal experiences inform what why think and how we feel, they are a very important type of information and I think so long as you include it with respect to other stake holders, your doing well.
    I never get a sense that you over-step anyone’s boundaries or speak inappropriately. This blog is about you, everything but the name reflects that =P
    Sounds like your early morning dialogue is helping you into a panic?
    I prescribe sleeping pills or meditation, which ever idea is least offensive (you cant do both… won’t work =P)
    Please keep writing, slow it way down if you like, but I would miss your insight if you canned it all together.
    oxox

  14. NT mom of autistic young woman here and occasional reader of your blog that I only discovered a few months ago. I was thinking a lot about hope today — it means many different things, and has meant a lot of different things over the years in my own parenting journey. We hope “for” many things, for ourselves, our kids, our world. We never “give up” hope– holding fast and firm and faithfully to the belief that our children can and will live full lives and do great things. A mentor of mine firmly believes that we are called to “practice hope” — that hope is not external but is manifest in how we live our lives. Hope is something we DO, something we live out every day. So I see your writing here and elsewhere as practicing hope. Please keep writing!!! I too have learned a tremendous amount in the last few years from listening to voices of autistic adults (including my own daughter’s) and one thing I’ve learned is that there is a place in the autistic advocacy movement for allies and supporters, especially those in a position to amplify, augment and lift up a neurodiverse perspective. You can reach many, many, many people with your writing which is clear, honest, and accessible.

    We all lose sleep, all the time, don’t we? the election season has me completely wigged out (to the point of selectively tuning most of it out, and I’m actually quite a political person). High stress and angst all around. As your wise friends suggest, go easy on yourself, let the phase pass, and you will likely settle into a new rhythm (kind of like when the kids go thru those growth spurts, and everything is out of sorts for a few weeks/months till they “settle down” into new physical/emotional/spiritual place — I think we adults do the same thing. Throw in hormones and we can get really off kilter.

    • Ann – thank you for writing this. I really loved reading about “practice hope” it reminds me of Douglas Biklen who writes in his terrific book Autism and the Myth of the Person Alone how to presume competence is optimistic and to do otherwise is pessimistic. I think of that, how I choose optimism, which like hope, may not come naturally at all. It certainly doesn’t to me!

  15. It is so easy to lose ourselves, isn’t it…..
    We bury ourselves in information, doing, caretaking…all because we must and also because it buys us time before we are ready to bring ourselves back into balance.
    I have thought your blog has been a Journey of Hope….realizing that your Emma is still and always has been the same beautiful baby you first looked at before all those “experts” invaded your mind! and a Journey of Hope for us, some us who might have been around a little longer, who need a little “hope” now and then when the world gets ugly.
    love to you and PS my nick has never, ever liked being mentioned.

  16. i am very glad a found your blog…. Despite being about as far geographically as possible… Its such a relief to read honesty like yours, and know there are others out there on this journey to get ideas from. I would not have been able to achieve so much with zack without electronic communications…. I would have been stuck with the doctor’s comment from when he was about 2 years old (not speaking, walking, or wanting to communicate in any way) ….’he’s just a bit slow, learn to live with it’

    i do like the stars and confetti idea 🙂

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