From Diary’s Facebook page last night …


{image is a photo of Katie and me on Jetties Beach, Nantucket, 2008.}

When I started writing Diary, Katie was 7. Tonight, I’m taking her to her high school orientation. Don’t blink, my friends. Don’t blink.


The evening has been a blur of information.

The kids can choose their track of study – college prep, advanced college prep, honors to advanced placement.

… with an eye on the [state’s standardized test], a requirement for graduation. 

Students don’t just go on to four-year colleges, but COMPETITIVE four-year colleges.

They have every right to be proud of the statistics – of their reputation for academic rigor.

But that doesn’t mean it isn’t hard to hear, to think about what it will all mean for Katie, and what it will mean for Brooke, only two years behind her sister.

I’m sitting with a friend whose autistic son is an eighth grader in the same program as Brooke. I reach out and squeeze her hand when she begins to quietly cry. I assure her that he’ll be okay. That he’ll have a different experience than the one the speaker is describing. “He’ll have the support he needs,” I say. I’m speaking as much to myself as to her.

We split into groups and move around the school to hear about the different disciplines – Math and Science, History, English and World Languages, Theater, Economics, The Arts. The offerings are dizzying.


In one of the sessions, a student is talking to us about the business clubs. He’s apparently in pretty much all of them simultaneously, which seems to be par for the course around here. While he’s talking about the competitions that they attend, I get an image of Tom Cruise at the end of Risky Business in my head. I can’t resist sharing it with the mom next to me.

I whisper, “Princeton can use a guy like Joel.”

She laughs and then quietly says, “Can you imagine being the one dumb kid in this place?”

I go numb.

I plaster a smile onto my face, where it will remain for the rest of the night.

I can’t fall apart here.

I can’t.

I head home and hug my girl, trying desperately to manage what I’m feeling.

I hold her tight.

I keep her up past bedtime.

And then finally, I tuck her in with a final round of giggles and kisses.

And then I climb into my own bed, painfully aware of just how much work we still have to do.

18 thoughts on “untitled

  1. I know why she said what she did but I do wish people would think before they speak.

    Please send love and strength to that Mom you were reassuring.

    Sending love and strength to you, Jess. I’m so sorry.

  2. I have felt that feeling. A rock in the pit of my stomach as I feel the color drain from my face. Ugh. Sorry you had to go through that.

    • As I began to read this, I knew I could relate to what you were feeling, having an older child labeled “gifted” and a younger child on the spectrum. But when I read that mother’s remark, my heart sank. My son will graduate HS this year, with a local diploma, having passed 5 required state exams. His classmates are wonderfully accepting of him and treat him well; they “get him” in ways many adults do not. I hope and pray that they will be the leaders who bring inclusion and acceptance to be a reality, by becoming their parents teachers.

  3. This breaks my heart.But it shows how acceptance and inclusion doesn’t start or end with peers and classmates and teachers.This issue is so much broader and that makes it overwhelming at times.
    I’m sorry to say that the parent was not the exception,rather the norm.Katie will probably encounter this type of attitude from their children on a daily basis.She needs to know how to respond in a matter appropriate and comfortable to her.Because I can’t see her biting her tongue for 4 years.

  4. When I was looking at my high school and especially at my sixth form (UK) my foremost decision was based around the teachers. I know that if I ‘like’ the teachers then everything will go much more smoothly and they’ll accept the unique way I learn, whereas if something doesn’t click I will struggle to learn from them let alone interact with them. Maybe that’s what you’ll need to look for when Brooke’s turn comes up.

  5. My first reaction was shock that the students could choose their tracks of study. Doesn’t anyone advise them according to their abilities? So many parents will push for that super advanced placement level for no good reason other than their own egos.

    My second reaction was that the poor kids had to have these pressures put upon them to compete for the competitive schools and this was the statement at orientation. Sounds a little like orientation into the Marine Corps.

    My third, of course, is what will it be like for Katie and then, of course, for Brooke.

    I can only hope that Katie will find her happy place and not be pushed too hard, too fast. She’ll have her friends, her theater group, etc.

    Brooke will have her support system. You and Luau have seen to that.

    For now, breathing will be good!

    Love you,

  6. I live in one of those Lake Woebegone towns where the children are “all above average”. We chose to step off the track. My daughter went to a Waldorf high school, which was a very good fit for her. My son was in an out of district placement, which he loved.

  7. Jess…. When you wrote the words about going “numb”…. My breath caught and I thought ” how can you do it?” Day after day, writing of the everyday challenges and triumphs of OUR girl and moving through each hour at the speed of light…. And then … That …. You have support and love from places that you’ve never been, from people you’ll never know…. We breath for you when you can’t…. You are changing my world from black and white to color. Just needed to tell you that this morning….

  8. People often don’t realize the power of their words (myself included). It’s a good reminder to think before we speak.

  9. I had 2 children that were very smart; school was not a challenge. But that was only one aspect of their lives. There were other heartbreaking events that shaped the course of their lives. Things so deep I hope no parent has to see their child suffer through. The only parent they really had was me. It wasn’t enough. Often when reading your blog, the quote ” The best thing a man can do for his children is to love their mother” comes to mind. When children have the unity that you and your husband do, and both of your children are so loved, the sky is the limit. People say things without thinking, I know I do, not knowing how it can make others feel. Even when I don’t know their circumstances. While going through my children’s college years, some of the smartest kids, in every club, etc. had so many other issues that were actually life threatening. The best thing I ever learned was when I was going through a divorce, long overdue, It was the last game of soccer for my youngest, with a party at one girls house after. When I was leaving to go to work, again on a Sat, I passed a house where a man and a woman were decorating their Xmas tree in their picture window. I was never so broken-hearted as that moment, going through a divorce. I called my lawyer, and she said you never know what goes on behind closed doors; they could close those curtains, and he beat the crap out of her. Or be an alcoholic, or a number of other things. That saved my life at that moment. There are so few kids that can sustain the type of life that young man was describing, in college, and the years after. Yes, college may be competitive, but so is every other grade. Kids are mean, and they are just as mean to the mainstream kids as to others. Having 2 girls, we lived through a lot of meanness from other kids. One turned into a death threat from a teenager to my daughter. You know why? Bc she was pretty. I sat through many a college show when my daughter was applying, etc. it’s a lot of work for almost everyone. I know you are scared for Brooke, but with all you do for her schooling and well being, and understanding and learning every day, is an experience many parents never get to be a part of, because they just don’t care like you do. And those kids suffer a lot. Bc they are on their own from the time they go to 1st grade. Just breathe. Not all you see is the true picture. Of course the school is going to puck the one or two most involved kids to give a presentation. Those kids are few and far from the norm. It takes the parents to realize we are all in this together, and the more we do together keeps the kids grounded.

  10. You are so right about blinking – my oldest is a sophmore this year and we had to plan out her classes for the next 2 years as part of the ‘college prep’ our school promotes.

    It is really scary to think about her graduating in 2 years. She is planning on college, but finding the right fit for her will be key I think. There are a lot of schools that have programs in place to help autistic students so I am trying to stay positive and keep breathing.

    We have to take it one day at a time and try not to worry to far in advance (at least that is what I keep reminding myself.)

  11. hello there. my name is candice and i am 23 years old. I am autistic and have verbal apraxia; I was non-speaking until I was 15 (I am 23) and still have difficulty with spoken language; I mostly type to communicate, even though the process of typing for me is painstakingly slow (I’ve been working on typing this for over 25 minutes). I tend to jump up and down when I am really excited, which is a lot. When I’m with my mom, there have been times people have come up to her and said, “what is wrong with her?” People assume that I am unaware of what they are saying, but i am so very aware.
    It saddens me that a parent could say that about their child when the child could potentially hear their words. I want people to always presume competence because it’s the best thing.

    P.s. One of the reasons I became interested in your blog is because like Brooke I use scripting as a means of communicating. I like to script things mostly from Ultimate Spider-Man, doctor who and my all time obsession…My Little Pony.

    • Your words are beautiful Candice, thank you for taking the time to share them with us! I wish I had the words to touch your heart the way your words touched mine…

  12. I know you know this, but I also know that we can’t always feel what we know, sometimes we only feel what we feel. Wherever Brooke ends up for high school, she will be absolutely nothing but a gift, a joy, an asset in her school, her classes, and any activities she chooses to do. There is nothing less about Brooke’s unique strengths/challenges/interests. There is different, and most high school kids need to learn a thing or two about different. Heck, so do their parents. I know the feeling of sometimes wanting to be able to set aside educating and awareness-raising and just be who we are. I almost have to give myself permission and then force myself to accept it every time I choose NOT to jump up and take a stand. But then I still feel the pressure, like I should have.

    That mom’s comment… stupid is a word with no meaning. Have you ever met someone stupid, someone with nothing uniquely his own, whether knowledge or talent or passion, that benefits the rest of the crowd? Working at an autism center, and otherwise having spent a ton of time with kids of all ages… I can’t say that I have ever met a stupid one. Awkward, yep. Inconsiderate, sure. Self-entitled, day-dreamy, inattentive… of course.

    Stupid? That equates to being worthless… a person who lacks anything worthy of being a benefit to the rest of us. God doesn’t make people like that (not even the ones who we sure do want to bop on the head now and then, like the lady who made the comment… she was being less than thoughtful, for sure, but still, she isn’t without purpose). We all have value. What she said… it doesn’t have meaning, not in this space-time continuum, anyway.

    Most of the people who are at the receiving end when words like that are thrown… they’re the ones who are smart, confident, and loving enough to realize how untrue it is. They are the ones who believe that most people who say those words just don’t know better or have some deep hurt in them. They’re the ones who are bold enough to stand up and speak out. They’re my community, my very best friends, even myself. What people mean when they say we’re stupid is that we’re different, unexpected, uncommon, un-masked, people who don’t fit in with the crowd.

    Why, thank you, and very much.

    I know you know, and I know there’s a lot more behind what she meant and how you reacted than that, so many fears and uncertainties. It’s okay. It will be okay.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s