The Endless Parade of What Ifs

Emma and I are leaving this…


and returning to this…

without Richard and Nic.  I know.

Crazy, right?  Except that Emma is going to day camp.  A camp she adores and has been going to for the past four years.  A camp for neurotypical children, run by a man who welcomed Emma and urged us to let her attend four summers ago.  Each summer he gives me updates on how she is faring.  Joe will shadow Emma as he has the last three summers.  I will write and get work done for my business, before heading to Jerusalem for the Icare4Autism conference at the end of July.

This Thursday Emma and I are going to Fire Island to stay with my dear friend, Bobbie for the weekend.  She and her family have rented a house on Fire Island for the summer and invited us out several months ago.  Emma has been talking about going since April.  And while Emma is excited and can’t wait to go, I am filled with trepidation.  Because along with Bobbie and her two children, one of whom is Emma’s age, there will be another family too.  I have never done this, spent an extended period with a neurotypical family, forget TWO neurotypical families.  It will be just me and Em, with no one to help out if things start to go badly.  It is a testament to my friendship that I was able to accept Bobbie’s kind invitation.  I have spoken to her at length about some of my fears.  She has a vague idea of what I’m talking about.  But it’s vague at best.

What if the other children don’t include her?  What if they do include her?  What if she wants me to spend the entire time in the cold ocean?  What if she takes off all of her clothing and runs through the house naked?  What if she makes strange noises and whips her string around?   What if the other children make fun of her?  What if they say things to her that hurt her?  What if they pretend she doesn’t exist?  What if they talk about her in front of her?  What if I’ve turned away, even for just a second when this is done?  What if she wants to play “duck, duck, goose” and they tease her or laugh at her for wanting to?  Will I be able to remain calm if any of these things happen?  What if I don’t have the words to explain that they need to appreciate her?  What if I can’t find the right words to describe how amazing she is if they’d just put aside what they’ve been taught to expect from someone?  What if?  What if?  What if?

Why do I think in these terms?  Emma is Emma.  Let me take a page from her book of self acceptance.  She is who she is and who she is, is pretty f@#king fabulous.  I do not need to worry that Emma will behave in a cruel or manipulative way to another child.  I don’t have to worry that she will gossip or whisper behind another child’s back or knowingly exclude a child.  She will not bully or lie.  She will not play favorites or tell secrets.  Emma will not play tricks on any of the other children or make them feel badly about themselves.  It’s not in Emma’s nature to tease or ridicule.  She isn’t capable of behaving in hurtful ways to others.

I’d be lying if I didn’t admit to worrying.  Emma is different and truthfully, so am I.   I have never felt completely secure in these kinds of situations.  I have never felt fully at ease in groups.  I have always felt slightly apart from.  As though everyone else got the same script, but the script I was given was to a different play with different characters and in a different place.  It’s been this way, long before I had children.  I feel most comfortable with people who are a bit “quirky.”   One of the things I love about communicating with Autistics is that I don’t have to second guess anything.  If I don’t understand something I say that, I don’t have to pretend.  There aren’t any hidden agendas.  No one’s trying to socially outdo the other.  There is a directness and an honesty that I appreciate.  No one is going to talk about the weather or if they do, it’s because it’s somehow impacting them in a meaningful way.

My friend Bobbie and I have known each other for more than twenty  years.  We have been through a great deal together.  She’s one of those friends who asks questions instead of giving advice.  She has listened to me go on and on about Em and autism and she has followed Emma’s progress, and mine too.  She has been there for me, applauding me, cheering me on and when I’ve asked for it, given me her opinion.  When I think of her, an image of an extended hand comes to mind.  She is there for me.  She always has been.

So I’m taking a chance.  Whatever happens it will be memorable.  And who knows, we may even have a really nice time.  But regardless, I will have pushed past my comfort zone by trying something new and this time, Emma is leading the way.

22 responses to “The Endless Parade of What Ifs

  1. Great blog post. It is more easy talking to people who have ASD. There is more forgiveness there if I’m goofy or trip up my words. If I don’t do something correct that’s ok they forgive me cause if they do it I forgive them. No one is perfect and its too hard to try to be. Typical people want you to change to fit in. You have to be the same. I find there is little room for error. But with a person with ASD There is a genuine quality there. No the person isn’t got some crazy agenda. The conversation is what it is. I really loved that part of your bolg post.

  2. I was introduced to your by way of a posting on facebook from Amy Sequenzia. “My” daughter Emma is 20 and has autism. She found her voice via writing 2 years ago and says she is a “new woman with multiple complex disabilities”. I also have a son Nick.
    Emma has a blog, so when I first saw Amy’s posting with your blog highlighted I was startled. Then grateful. As again today, I needed some Emmahope (!) and so thank you for your beautiful writing.

    • Hi Paige,
      Isn’t that funny that we both have children named Nic even though you spell yours with a ‘k’) and Emma. I loved hearing about your Emma learning to write at the age of 18. That gives ME such hope! Because even though my Emma is learning to type and write, she doesn’t do it with any excitement or self-motivation. It is something she does because we make her practice, but it is difficult for her and so she resists. Will you please send me the link to your Emma’s blog? I’d love to read it.

    I just asked Emma if I could give you the link, she responded. Yes, but I am not professional, you know. ha!

    • Hi Emma,
      I love your blog and am going to read ALL of it! I am traveling on an airplane today with my daughter, also named Emma. We are returning to our home in NEw York City. When we get home I will read more of your blog and I can’t wait to make comments on it! Do you like getting comments? I love hearing from other people.

  4. What a great blog. I know how scary all the what ifs are because i share them too, every one on that long list. The one that made my heart ache the most was “what if she wants to play duck, duck goose” and they make fun of her. I can just so picture that. Her asking the other kids to play, so sweetly, innocently, adorably — and getting eye rolls, sneers, or outright ridicule in response. I don’t know how much ridicule impacts her, because she can’t tell us now. I just know that she is so sensitive and it makes me angry and so sad just to think about other children and adults who won’t take the time to look beyond their conditioned perceptions and responses and see the pure beauty, love and joy that is our Emma.
    I’m going to miss you both horribly. But my love follows you wherever you go, through the difficult times and the happy times. I am there in spirit.

  5. I was just introduced to your blog yesterday and enjoyed reading almost all of the posts. Emma and your journey closely parallels mine and my children’s, but today’s post really hit home.
    My 15 year old son Andrew was diagnosed with PDD at age three, he’s doing great but that’s another story. About six months ago a classmate’s parent brought to my attention the possibility that my daughter Emma (yes, another Emma!) who is 12 years old might be on the spectrum. Bright and beautiful, it NEVER crossed my mind. Her kindergarten teacher once said she might be autistic, she was extremely shy, and I figured she was saying this because of her brother and dismissed it.
    Long story short, she is indeed Aspergers and together we are focusing on ways to help her navigate her world. Now the part that hit home, the realization of Emma’s differences made me also realize mine. It took 49 years to realize I’m an “Aspie Girl”! I have an Aspie dad and brother (so highly genetic), but only now seeing it in myself, and it’s liberating! Now everything makes sense, why I am the way I am, and I can stop blaming myself for being given a different script than neuro-typicals (love your writing!) and begin basking in self-acceptance.
    My Aspie traits have helped me to become a successful entrepreneur, multi-business owner, writer, and most importantly a dedicated mom. Now both Emma and I will be working on losing the fear of interacting with people and learning how to nurture and make loving connections. Wish us luck on our journey!

  6. Love love love this blog entry Ariane as it is so raw and open! Pure honesty and something all of us that have kiddos on the spectrum have experienced! I too am setting out on a journey with both kids by myself and heading 5 hours away for a family reunion in 2 weeks! I was not going to go at all but my family kept asking if I was coming and so I finally decided…WHY NOT??!!! Erin says I have lots of ambission! :O) It will involve a hotel stay for 2 nights. Brett does not sleep well out of our own home so I will be sleep deprived…also a 5 hour car ride one way, packing it all and making sure I have all I need to help make sure he is secure and happy…, and it involves a sit down, buffet dinner with 100 or so of my relatives. I have done this before alone but not since we’ve had anxiety issues etc. That is my biggest fear is that we will go somewhere and he will freeze and refuse to move. A challenge for me as he is quite tall and strong now. Also a challenge in that it is totally unpredictable when he will get like that. Also not “poo” trained yet so praying he doesn’t do THAT in the pool or heaven forbid the hotel room floor! UGH! I guess I go on and on about my own fears just to help you realize that you are sooooo not alone in these thoughts you have. I am really trying to have a positive outlook on it all and looking at it as a great experience for me to get over some of my own anxieties! 🙂 I would be fine staying at home and not branching out but I realize that family is important to me and I need to put forth the effort. They will totally understand if he screams out during dinner or has to have his ipad playing while we eat….my mom and brother will also be there to help if the need arises. I will be surrounded by love and so will Brett! I think we are going to a BIG tractor musuem where he can climb up on HUGE tractors, checking out a new park and swimming in the hotel! All things Brett just loves. So we just may have a good time too!!!! Can’t wait to hear what a great experience you will have! By the way, I fear all of those things too with NT kids and they have proved me wrong so many times. So often they are very understanding and try their best to include Brett. We are strong women and we WILL have a great time! :O)

  7. ps…..Fire Island looks gorgeous!!! 🙂

  8. We’re supposed to worry, to fret, to ask “what if” — because what happens with our children in a new situation matters to us and these are natural responses. The important part is — you go through with it and try it. The process is what matters. The outcome? Either icing on the cake or lessons learned 😉

  9. .I just want to reach out and tell you how much I enjoy your blog. I have a son with Tourettes and have experienced so many of the feelings that you articulate so well. I remember sitting on an airplane years ago assessing the inherent engine noise of the plane, hoping it was loud enough to cover up the sound of my son’s verbal tics. I felt we would never travel anywhere together as a family because I wouldn’t be able to face the embarrassment of his noise making in such a intimate setting as the crowded seats on a plane. I am in a different place now partly because my son has outgrown most of his verbal tics but mostly because I had to grapple for many years with my feelings and my reactions to something so out of “the norm”. I wish that your blog had been available to me at that time. Of course all of our journeys are unique but know that your writings give so much to me. I have been able to understand myself better because reading your evolution helps me understand my own and gives me strength. Please remember that not only are you not alone, you are admired.

    • Deena, Thank you so much for sending me such a lovely note. One of the amazing and most unanticipated by-products of this blog has been the wonderful people I have met as a result of it. It’s so nice to meet you and thank you for telling me a little about you and your son.

  10. Wow. I don’t even know what to say…this post could be about my 6 year old aspie son and me….you really nailed it…..

  11. Pingback: The Beauty in a Conversation | Emma's Hope Book

  12. I am years away from having an autonomous child, yet I worry my heart out every second he steps away from me. What keeps me going? This:

    “Emma is Emma. Let me take a page from her book of self acceptance. She is who she is and who she is, is pretty f@#king fabulous.”

    My almost six year old is cut from the same cloth. I respect how you celebrate her independence, despite your concerns. A parent can only guide, not grip their child.

    Good for you!

    • “A parent can only guide, not grip their child.”. Thank you Lori for commenting, for your words and for writing your beautiful blog! which I so look forward to reading!

  13. Pingback: It’s My Birthday and I’ll Laugh if I Want To | Emma's Hope Book

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