the rabbit hole


We are on the ferry on our way to Nantucket. The sun is shining. Kids are everywhere.

They move around the boat’s deck in clumps – chasing each other down or playing games of Hide and Seek.

Brooke has taken notice of the three girls who have congregated right behind us. They are giggling, half-hidden behind a wall. They are obviously attempting to hide from a fourth girl who is making her way across the deck, peeking behind every large object that she passes.

Brooke gets up from her chair and walks over to the girls. She stretches out an arm and points a slender little finger in their direction. “What’s your names?” she asks.

Her voice is a little too loud. Her tone is a little too flat.

The girls stand stock-still. They stare right at her, but not one of them speaks.

Brooke takes a step forward, obviously thinking they must not have heard her. So she asks a little more loudly this time.

“What’s your names?” she nearly yells.

This is my girl reaching out.

She wants to be heard.

She wants to make friends.

She wants to say, “Nice to meet you.”

No one answers. Not one of the girls so much as acknowledges the question. They simply stare at her.

“What’s your names?” she asks yet again.

They stand shoulder to shoulder together, creating an impenetrable wall.

I finally interject.

“Girls,” I say, “she’s just asking you what your names are. Can any of you tell her what your name is?”

I’m trying to sound friendly, but I can’t help but wonder how hard it is to answer a simple question from a girl their own age. I worry that there’s an edge in my voice. I hope they don’t hear it, but I do.

One of them quietly answers. Her name is Ashley.

Neither of the others says a word. They are still stuck to one another, looking at Brooke as though she’s just stepped out of an intergalactic transport.

She retreats. As she walks back to her chair, she mumbles into her chest, “It’s nice to meet you.”

She slumps into her chair and stares out into the water. I put my arm around her and squeeze her gently.

I whisper to her the words that we worked on over the summer, “Remember baby, when you walk up to a group of kids, you can say, ‘Hey, what are you guys doing?'”

She responds with a quiet, “Yeah.” It floats out over the water.

I leave it at that. It’s not the time to push.

I watch her, trying not to read too much into her body language. I pray that she doesn’t feel the sting, but I am terrified that she does.

For so long she (seemed to) have the luxury of oblivion. Burgeoning awareness is a double-edged sword.

I kiss the top of her head, wishing that loving her enough could somehow make this all easier.

Luau nudges me from three seats down. “Stay out of the rabbit hole, babe,” he says. “It’s O.K.”

I nod. “I hear ya, hon,” I respond. “I’m fine’.

We both know I’m lying.

Sometimes this stuff is just hard.

25 thoughts on “the rabbit hole

  1. When Wyatt was younger, heck even last winter, he was still so involved in his own experience, that there never was any rejection. This summer he has started reaching out and trying to connect in his way. He will jump in front of someone give them a huge smile and laugh, his non-verbal way of enticing someone to play with him.

    The blank stares or looks of confusion/fear are so much harder to cope with than anything else we have faced so far. I know how hard he is trying, I know how hard he has had to work to get to this place and it is crushing to see him turned away from his first attempts at friendship.

  2. Ouch. I know. This is the part that I fear will never get easier. I’m hoping that one day the Roc meets a special person who will like him for everything he is, someone who will be his real friend. I know there are children like that out there, I’ve read about them. I hope for that for all of our kids. Yours too girl. Love.

  3. We’ve lived that too, Jess. I teared up reading your post remembering the times Ethan experienced the same thing. He seems to have moments of clarity sometimes, full eye contact, spontaneous sentences,etc. and then he goes right back to stimming. The hardest was one morning during one of these moments he told me he didn’t want to go to school ,I asked “why” he said, “Well,Mom, cuz I’m different.” After telling him everyone is different and his kind of “different” was WONDERFUL the cloud came back over his eyes, he started talking about Monster Jam again and got on the bus. I barely made it back in the house before I broke down.
    But… know, on the opposite side of this there’s rarely a time when we’re in Wal Mart or the grocery store that some child from his school doesn’t come up and say “Hi, Ethan!” and ask for a high 5 then turn and introduce themself to me,knowing that Ethan can’t explain how he knows them. My favorite time was when a boy at the end of last year informed me that when Ethan went to middle school not to worry about him because “Miss Jana, I got his back.”
    When those times happen that another child seems to shy away when Ethan has reached out we just shower praises on him for trying. Hopefully it makes him remember the attempt, not the rejection.
    Thank you again, Jess, for this blog. It’s the first time in a long time that I don’t feel so “alone”. Love to you all!

  4. We’re getting a lot more voicing of the frustration. And bolting when it gets overwhelming. You can tell a lot about a family by how they react to Joey in public, and unfortunately, we get a lot of those odd stares.

  5. The rabbit hole is a good description of “that” place.

    Just in the last 6 months my guy has started to get that he is different. It is hard to watch. He will do the same thing as Brooke except he will then go into some speech about reptiles (even though no one asked about reptiles) and I can see the boys looking at him like he is from another planet. I so want to save him every time.

  6. Hugs! It is so difficult to watch your children struggle and even more so when their efforts are rejected! Babysteps, my friend, babysteps…… look at how far she’s come and the real friendships she’s made this last year! HUGE, HUGE, HUGE!!!! Enjoy your week.

  7. “Burgeoning awareness is a double-edged sword.”

    Your words cut to the heart of it. The awareness I begged for has bitten me more than once.

  8. My five year old daughter, with “autistic-like” characteristics from her medical/mitochondrial disease diagnosis, asked halfway through church on Sunday, to go to Sunday School, taking us by surprise. She hates the social settings of groups. The whole thing, dropping her off, helping her get to her teacher and the other kids, watching her fear and anxiety and leaving with a wave and a smile as she sat frozen, to picking her up was excruciating. We scanned the big group of girls, gathered together, giggling and talking and didn’t see her. We scanned again and then again and finally looked around the room. She was at the far end of the room, against the wall, by herself.

    She prays every night to find a friend and asks why God doesn’t help her find one.

    It’s heartbreaking.

  9. Ugh. I know this situation and it’s associated miserable feelings all too well. I share your pain. We ALL do, based on the responses.
    Anyway- I’ve added some soft furry carpet, lounge chairs, a mini bar, and a blender to my rabbit hole. I like to be comfy when I wallow. Some days it’s just not possible to avoid the rabbit hole no matter how hard we try.

  10. You’re right, Sweetheart! With awareness comes some hurts! Think about how much Brooke has changed socially. She’s making good friends with good little people. Luau was right. Stay out of the rabbit hole. …and besides, those girls were obviously the mean little girls that the book was written about.

    Hang in my love,


  11. I teach my college students to understand that their first reaction when they meet someone with differences will be fear. Fear is a biological response to things that are new. Meanness comes when the fear is not relieved and there is no translation to things that are familiar and so you strike back.

    In other words, it’s not Brooke who had autism at that moment- it was those little girls. But because they were afraid of Brooke- sweet Brooke- it hurts. It hurts a lot.

    She WILL find a friend- and you, Mama, get to keep translating her to others so that they aren’t afraid.

    Remember what was at the end of that Rabbit Hole? (I used the same phrase recently, too- funny, that). “You’re all a pack of cards!”

  12. ARG! Why do these hurts weigh so much more than the love and the victories? Why does the meanness so harshly offset the love of S? But I know it does.

    Ditto Drama, once again.

    It f**king sucks.


  13. “Burgeoning awareness is a double-edged sword.” So true, and so agonizing. We’ve been there for a few years. It’s one of the parts I really hate about this “difference,” as Nigel diplomatically calls it. Hugs.

  14. When we have moments like this (and they are a bit different because I have boys, but boys can be hurtful through their actions more than their words), I stop and remember the positive social interactions that we do have – the playdates that last longer than planned because things are going well, the spontaneous “see you tomorrow!”‘s to his friends when he gets out of the van…these are the interactions that matter and are long lasting. Just like Brooke and her friend from camp (S, right?). That matters. The mean girls? While it hurts in the moment, in the long run it doesn’t matter at all.

  15. It hurts, it stings, it makes you want to wrap your child in a protective bubble. I came home sobbing from the park earlier this year after my son’s attempts to connect were not met with outright exclusion, but with slightly older children including him solely for their own amusement at his less than typical reactions(parents nowhere to be found–believe me, I checked). Luckily their cruelty went over his head, so we left before I cut loose on those kids and brought it to his attention. The exclusion hurts, but the worry that other children will take advantage of or set up for mocking my sweet, nice, somewhat naive child who just wants to connect is what keeps me up at night.

    So in the middle of the night I try to remember that a person who rejects the unfamiliar and atypical out of hand is destined to live a boring, colorless life; an unflavored gelatin of an existence. And those who would mock or take advantage of others will eventually end up alone and disconnected, isolated by their own actions. You are building an unbelievable foundation for Brooke–a community of people who care about and encourage her; a family with unwavering support for and acceptance of her; an educational environment that celebrates the unique qualities of its students. All of which will allow her to feel loved and accepted, even when there are those personal rejections, and allow her to form bonds with friends like S, who get it. Brooke is going to have an amazing life filled with people who truly care about her–you are making sure of that.


  16. I’m afraid my response to this would have been much more cogent this morning, but I’ll give it a go. I am so sorry that her attempts at socializing in the “real world” are often met with rebuffs. I am so incredibly grateful she has a connection with that one lovely little girl (can’t recall the initial) and that spectacular mom. I hope these playdates will help make up for the ignorance she encounters when she’s not safely ensconced with children she knows.

    Your “luxury of oblivion” comment was so apt. Although my oldest will never lead an independent life, I am at least grateful he is spared any awareness or insecurity that he is different. My youngest is the one I worry about, as we slowly make our way into the world of playdates and friends.

    What I do know for certain is that you are doing everything possible for Brooke. I am sure she is aware of your enormous love for her, and that will carry her through tough times, even interactions with “mean girls”. She is very fortunate.

  17. Like so many that have already commented, I know this feeling, and I have no advice. Just know that we are here. Lots of love to you and Brooke, she really is so incredible Jess.

  18. comments from diary’s facebook page:

    J ~ Are people still this shallow? I’m really hoping it’s because these girls are young and haven’t been taught manners and common decency by their parents. Brooke is truly coming into her own- and it’s beautiful. Their loss. Truly.
    L ~ We had a similar situation this past weekend. Leaving my parents house, 2 young girls are sitting outside with their Mom two doors down. We walk past them as we make our way to the car. We stop to say hello, and my son asks, “what are your names?”. The two girls look at him with knitted eyebrows. He asks again and the mother prompts them to answer. The little one’s face smooths out and answers but the older one is still trying to figure out what it is about my son that’s just not right.

    I will come right out and say that as a kid, children with disabilities scared me. They were unpredictable and I didnt understand what was happening with them. They made me feel uncomfortable because I didnt know what to say or do. I will give children the benefit of the doubt in these situations because I remember. I simply explain that he’s trying to make new friends and its a little difficult for him to express himself. Sometimes children are put off by his stims. I ask them what they do when they get nervous. When I am there to help direct the situation, I can see the other children start to relax. They lower their defenses and really start to SEE my son.

    However, it doesnt always work that way – and in those situations I remove my son and know its those kids’ loss.

    LJ ~ Very well said, Lisa!!!

    A ~ I can tell a lot about a family by watching how they react to Joey in public places, like the pool.

    LB ~ ‎”Right Church, Wrong Pew”…..not my words but those of our autism guru after I described my son’s attempt to reach out to other children.
    I hover, I hide out, I protect, I interject….and the the end of the day, I hug him and pray that tomorrow will be better.

    M ~ Making me tear up this morning! My son is only 4 1/2, but he gets the looks all of the time from kids. They must wonder why he jumps in circles, banging the top of his head. It’s so hard to watch, and as moms we just want to fix everything, and make them happy. Thanks for sharing, we can all relate.

    JMM ~ Ava is turning 5 and she gets the same reaction from kids (not all mind you). Is it the age or their manners? I either interject in hopes of educating them or I tell Ava that they are not ready to make friends and we will try again another time. But UGH! Makes me want to vomit.

    D ~ There was a mom that lived near us that insisted that her son always wear a button that said on it, im not spoiled, I have autism.
    For the longest time I had a hard time understanding why she would choose to have this beautiful boy walk around labeled all day.
    Its because of childrenand adults that you are describing.. Honestly, although I understand why she chose to do that, I still don’t know what is the right thing for me and if parents can’t teach their children the right way to react and treat my child, where do I begin?

    E O’L ~ Thank you Jess for writing this – it gives me huge comfort knowing that I’m not alone. My daughter Sally is 5, recently diagnosed. Your diary keeps me going, thank you.

    DSM ~ Sadly, I know that rabbit hole all too well 😦 we just had the “point and snicker” happen last week – luckily my son didn’t seem to notice, but I did. These kids were my son’s age (12). At this age, I find there are some kids that try to be nice to him, they can tell something isn’t right, but there are still plenty of pointers/snickerers too.

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