About that trip to DC

About that trip to DC

Somehow March is over and I’ve still not shared much about that trip to DC. Part of it is that whole black seed of misery thing and part of it is that I have told the stories so many times it feels like everyone in this state and maybe a few others have heard them already. For those of you who have not been subjected to the repeated stories already…

The trip to DC was awesome. Caleb spread his glitter through the hotel, the Metro, various restaurants, museums and, of course, the halls of Congress. It was an amazing trip…

  • Caleb reminded us that airport security is not for people like him. You know, rock stars don’t stand in lines. It was not a long line, but that does.not.matter. By the time we got through the security area I was reminding Eric about that pact we made LAST TIME we flew to not ever do that again. We renewed that pact.
  • When we landed in DC, Caleb immediately stood up, clapped his hands and cheered, “Nice flying! Nice flying!” which the crew seemed to appreciate. Then he asked, “Go again?” Can we at least make it to the gate before we start thinking about leaving, please?
  • Caleb looooooved the hotel. He said, “Nice room!” every time we returned to the room.
  • We had to teach Caleb how to use the key card and how to find the hotel room in case we got separated. I was 90% sure we were going to lose him at least once in an elevator. (We didn’t! At least not on the elevator. I might have misplaced him in the lobby a time or two. Shh.)
  • DC uses 4 wheeled vehicles with plows and men with shovels during “Snowmageddon.” They save the plows for…I’m still not entirely sure what they saved the plows for. Definitely not for plowing the roads, that was obvious.
  • The Metro is clean and easy to use. Caleb approved. Eric had a little trouble mastering the ticket situation. My tip for DC travel…just buy a one day pass. Srsly.
  • We visited the Natural History Museum and the Air & Space Museum. Of all the countless treasures we saw, true to form…Caleb’s favorite part of the museums were the elevators.
  • There might possibly be an elevator out of service at the National Air & Space Museum. I have no idea how that happened.
  • The trip didn’t really start for Caleb until Holly arrived. In fact, she was Caleb’s favorite part of DC 3 hours before she even got there. My little man has amazing taste.
  • Caleb has mastered the art of scoring free desserts. He doesn’t share.
  • Caleb has mastered the art of taking selfies with strangers. Cool strangers, at least.
  • Caleb is not allowed to eat scrambled eggs ever, ever, ever again. (Thanks to the FX parents who cleaned *that* up for me. Gross.)
  • Caleb can shake hands & fist bump all day long.
  • With access to YouTube & DieselDucy, Caleb can attend a 4 hour training session.
  • With access to YouTube, Caleb can repeatedly interrupt a 4 hour training session with his belly laughs. DieselDucy has a really funny laugh. Apparently.
  • Caleb got to ride on his very first party bus. Yep, really…that was our ride to the Capitol.
  • Caleb did a frog impression on the floor of the House of Representatives…surely not the most ridiculous thing to ever happen there.
  • Caleb very wisely elected NOT to throw a snowball at his new friend, Representative Gregg Harper (R-MS)
  • Caleb made it through an ENTIRE DAY of shaking hands, passing out business cards and charming the socks off everyone he met.
  • Caleb was very happy to go home after 5 long days.
  • When we landed in Boston, Caleb stood up, looked around at the other passengers and instructed them, “Clap!” He has no patience for those who don’t appreciate the joys of air travel.
  • When we left the airport and began driving home, Caleb began giving us directions…to return to “Terliddle B.” Which would be where we had picked up Holly on Monday afternoon. He was unimpressed that we didn’t bring her home with us.

It took the next week for Eric and I to recover. As amazing as the trip was, it was 100 times more exhausting with Caleb along. We knew already that we’d take him again but then we Caleb received this…

What? We’ve been going for years…Caleb has been once…and he gets the handwritten letter from the Congresswoman. Nice. I’m not at all jealous! I sent this picture to Caleb’s teacher and, last Friday, she told me that Caleb had written a letter back to Congresswoman Clark.

In case you can’t read it, it says:

Dear Katherine,

Thank you for the note. Please come visit my school.

Your friend,

Caleb (I think that’s a picture of a dog next to his name…)

I’ll let you know when she comes to visit…there is no way she says no, right?



Two nights ago I had this dream, I was standing at the top of a mountain. It was a barren, granite mountain top like those you often see in Maine. Suddenly the earth shifted under my feet and the rocks slid in a jagged, irregular path down the slope. I was left standing on what remained, knowing I needed to find a way down to the valley below where everyone else waited. It was then that I realized my Papa was with me and was waiting for me to lead the way down.

I began walking down, weaving around boulders and sliding over rocks that rolled beneath my feet. Every step of the way, Papa was behind me. I finally reached a point where there was a sheer cliff in front of me and a hill so steep and unstable behind me that I couldn’t backtrack. I was stuck.

In a blink, I was back at the top…back at the beginning with Papa waiting for me to try again. I did. Over and over and over again, I zig-zagged my way down the hill only to end up in the exact same situation. My frustration and my exhaustion increased each time but still Papa stood and waited, and I walked on.

Finally, I was too tired to try again. It was then that Papa reached out and grabbed my wrist. It reminded me of a time when he and I were sitting at his kitchen table talking and he had reached out and wrapped his hand around my wrist. He was able to encircle my wrist with his thumb and pinky finger with room to spare. The memory warmed me and I felt my hope rising. He grabbed my wrist firmly, and he spoke to me. I watched his mouth moving and started crying when I realized I couldn’t hear him. Whatever advice he had, was lost to me. Whatever happens next, I have to decide. That little seed of hope was gone and I woke up.

I’ve put forth a lot of effort doing the same things over and over and over hoping that this time I don’t end up here…stuck with no way forward and no way back. I have been stuck for a very, very long time…in fact, I wrote in 2011,

“It’s like…I am this great big ball of AWESOME but inside is still this teeny, dark seed of misery. I keep hoping will just die if I don’t feed it. So I take my happy pills and I turn my attention to other, much more important stuff and the AWESOME rules. Then I think, “Surely it’s gone now!” and peek.

Dude, I’m that idiot in horror movies who just HAS to open the basement door because it’s been quiet for SO long, surely the ax murderer is gone! D’oh! *sigh*”

I am so very tired of this endless loop. Somehow I have to figure out how to rid myself of that dark seed of misery. I need to do it, I can’t just keep waiting for it to vanish. I just wish I knew how…



I am a work in progress.

I am a work in progress.

I wrote a blog, “Time for a new story?” last November on a topic that has become a bit of an obsession. Language. You will probably not find many parents of children with special needs who aren’t aware that language matters. Just look at the support the “R-word Campaign” has built.

Every time someone uses “That word” there is a public outcry, the size of which depends on who used it and where they said it. The President used it on late-night TV (I love me some Obama but…), late night hosts use it regularly (no more Chelsea Lately for this girl after multiple offenses), comedians use it (Here we go again…the r-word)…it is everywhere and it has defenders. They didn’t mean it that way and they didn’t say it about a person with intellectual disability. They yell about “free speech,” they argue that people who are hurt or offended are to blame, they scream about “political correctness.”

What they are doing is getting defensive and, instead of acknowledging how it feels to others, they get angry or dismissive. It would be super refreshing to at least get a bit of honesty from someone who defends their usage of the word (or any of its variations.) Just to hear them say openly, “I don’t care how you or your kid feel.” To have someone own their usage, acknowledges its meaning and then just says “Fuck you, I’ll say whatever I want.” People who defend themselves and try to argue over meaning and intent just infuriate me. We all know what it means and we know how you meant it. Guess what? It still hurts and demeans, it still is meant to indicate something is lesser. If you don’t believe people still use it “that way” go to Google Images and type it in. (Here, I’ll even save you the effort: Google)

My obsession with language isn’t just about offensive words. Sometimes people who are trying to be supportive or conscious of their language fail. I fail. I’ve been “inarticulate” at times, I’ve been thoughtless at times, at times my words were meant to convey one thing but have been read a way I didn’t expect (of course, I only know this when people tell me, which I encourage.) I tried to get at the root of it with my post, “My child is not a puppet” and I think I approached it wrong. It really and truly isn’t about any one word, or even any two or three words although we all have certain words that set us on edge. “Fraggle” is obviously one of them for me.

The root of what I have been trying to say in bits and pieces is this: It’s about using language that does not hurt, insult, belittle or demean anyone. It’s about using words that don’t infantilize other people or perpetuate stereotypes. And words can do all of those things even when you mean them as a compliment or an endearment. Even when you mean well, words can hurt.

Words paint pictures.

I want you to be aware of that and be thoughtful about what pictures you are painting. Like it or not, your painting influences how people see and treat my son. It can take generations to change perceptions, so be prepared to hear a lot more on this one in the meantime.  And, as the title says, I am a work in progress…I want to change the world Caleb lives in…one word, one stereotype, one false assumption at a time…but I won’t always get it right the first or maybe even the second time but I’m not going to stop trying.





CalebAt the last leadership series session, one of the presenters began the day by walking us through a bit of meditation to get us in the right frame of mind for a day of hard work (through play, it was awesome.) I’m going to shorten this by a great deal but you’ll get the idea.

She asked us to imagine a child being born, it could be any child and any setting. Imagine that this child is born covered in glitter. Then think about all of the people that child comes into contact with throughout their lives…all the people who were present when the baby was born, family, friends, people in the supermarket, doctors, nurses, teachers, friends, colleagues, people walking down the street, people in restaurants, people in the assisted living facility they live in when they’re very, very old…every person they sit next to, walk past or interact with. That’s a lot of people, enough to fill a stadium, at least, right? Now imagine that this glitter covered child touched each and every one of those people and shared their glitter. You know what happens when you get glitter on you, right? It’s impossible to get off! Days later you will still find it on the floor or in your hair.

I don’t know about you, but I pictured my son’s birth and he was covered…head to toe…in pink glitter. Glitter that was made to be shared…glitter that makes the world more beautiful and a happier place just by existing. I began crying before the exercise was even half over because I knew where this was going. I began thinking of all of the times we had stayed home instead of going, all of the times I had held him close instead of letting him explore, all of the times I had pulled him away instead of acting as his voice, his translator, when he approached someone. I began thinking of all of the times I had prevented him from sharing his glitter and I felt such pain. And when I thought about why I had done this it came down to…it was easier, it was more polite, it was less embarrassing…none of which are acceptable. I was so stuck in the moments that I was missing the big picture.

This was eating at me for the rest of the day. It was another entire day before I was able to share it with Eric and when I finished, I told him. “So, I’m going to stop. We are spreading that glitter everywhere from now on.” Throughout the week we spent in DC, anytime I thought to call him back…I stopped myself. I stepped in to help when others didn’t understand him (“He just wants to shake your hand.” “Oh, I thought he wanted my cigarette!” Duh.) I resisted the urge to keep him by my side, though I did still have to do a bit of herding to keep him from taking off in the elevators by himself. I encouraged him to interact with strangers (“Give him a fist bump when he comes back.”)

It was, in short, amazing. I saw things in Caleb that I had missed before. I saw the smiles he brought to people’s faces…even when they didn’t do anything more than look at him.

Sweetheart, I feel badly about all of the times I stopped you but it won’t happen again. Spread that glitter, dude!