Fragile X Advocacy

Today is World Autism Awareness Day!

Melissa

If you are seeing a lot of people wearing blue or turning blue on social media (and they are not discussing Obamacare) it is most likely due to the fact that today is World Autism Awareness Day!

This morning I was walking up the stairs at Caleb’s school behind a father and son when the son suddenly dropped to the floor like a limp noodle and blocked the stairs. The father calmly pulled his son to his feet and was greeted with fists. There were two ways to go here…I could have turned to Eric and rolled my eyes or huffed about having to wait a microsecond while this dad got his son safely out of the way OR I could smile sympathetically, let him handle it and then go on my way. I chose option 2 and within a few seconds I was up the stairs…no harm, no foul.

Yesterday, the ASD program at Caleb’s school attended the Circus of the Senses. They had a great time and Caleb even let me ask 2 questions about it before he told me, “I’m all done.” That’s huge, he hates answering questions!

Anyway…the kids all took the Red Line to get to the circus, this was easily the most highly anticipated part of the trip for Caleb. Sometimes it can take a bit of time to get yourself through the gates at the T stations, often they are crowded and when you have a bunch of kids with no impulse control…well…it can get a little extra chaotic. There was a young man in his mid-20’s who got caught behind the kids and chaperones and he found his way blocked. There were two ways to go here…he could have begun muttering under his breath some not so very nice things and tried to push his way around the group or he could have waited the extra couple of moments and then gone on his way. This young man chose option 1 and, when he tried to pass the kids, one of them moved unexpectedly and he TRIPPED over the child and ended up face first on the floor of the T Station.

So, if you ever find yourself in a situation where you can’t tell if you are looking at a child who is out of control because they have autism or if you are looking at a child who is out of control because they are brats…the safe bet is to just assume autism. Just take a breath, pull your head out of your ass and thank your lucky stars that, while you might be minorly inconvenienced in that moment, the child is under a massive amount of stress while he or she fights their body to do something you do every single day without even thinking about it.

So there is my autism tip of the day…

Just zip it and move along.

Happy World Autism Awareness Day!

About that trip to DC

About that trip to DC

Melissa

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?

I am a work in progress.

I am a work in progress.

Melissa

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.

 

 

Glitter

Glitter

Melissa

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!

 

Which are you?

Which are you?

Melissa

This story was passed out at a leadership series I am participating in. We all have a choice, we can only decide for ourselves.

Carrots, Eggs or Coffee?
Author Unknown.

A young woman went to her grandmother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved, a new one would pop up.

Her grandmother took her to the kitchen. She filled three pots with water and placed each on a high fire, and soon the pots came to boil. In the first pot she placed carrots, in the second she placed eggs, and in the last she placed ground coffee beans. She let them sit and boil; without saying a word. In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl.

Turning to her granddaughter, she asked, “Tell me what you see.”

“Carrots, eggs, and coffee,” she replied. Her grandmother brought her closer and asked her to feel the carrots. She did and noted that they were soft. The grandmother then asked the granddaughter to take an egg and break it. After pulling off the shell, she observed the hard boiled egg. Finally, the grandmother asked the granddaughter to sip the coffee. The granddaughter smiled as she tasted its rich aroma then asked,

“What does it mean, grandmother?”

Her grandmother explained that each of these objects had faced the same adversity: boiling water. Each reacted differently. The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior, but after sitting through the boiling water, its inside became hardened. The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water.

“Which are you?” she asked her granddaughter.

Family Leadership Series

Family Leadership Series

Melissa

Late last week, when Eric was at school picking up Caleb, the principal of the school happened to bump into him. She brought up a program that she thought he and I would be perfect for…but…either she couldn’t remember the name or Eric couldn’t. When Eric first brought it up, I thought we were being asked to speak at some sort of conference. I might have gotten a bit nauseated (shhh) at the very idea but I STILL said, “OK!” Why? Because speaking up for Caleb, until he can speak for himself, is my most important job. She promised to forward the information soon.

Then, on Monday, a message came across our Special Education Parent Advisory Council e-mail list. It was a forward from the PAC coordinator. I skimmed it and realized that this must have been what the principal had been talking about. First, I took a huge breath because I was now positive that this wouldn’t involve me having to speak publicly. Then my shoulders sank when I saw the schedule. It is SEVEN days…three of which are Fridays. I work!

I turned it over in my head for a day and then yesterday afternoon I just decided that it was that important. I have very (very, very) limited paid time off available and I have a lot planned for 2014….we have Advocacy Day in March and International Conference in July…plus, I do like to spend some of my time vacationing occasionally rather than always using it for fragile X stuff. I do need to step back once in a while! This might mean missing out on some vacation time with my family, it might mean less time in California around the conference and in DC around advocacy day but that is OK. No one can do everything, every time. I’m a big girl, I can prioritize and make hard choices. Are you convinced yet? It took me a while to get there!

I downloaded the application and, if I hadn’t been convinced when I started filling it out, I was by the time I finished. The application forced me to think about what I could learn, how much I could grow and how I could make Caleb’s life better.

The Family Leadership Series is comprised of three Fri/Sat (2) day workshops and one final day wrap-up Saturday session.

The workshops (which includes an overnight at hotel) will focus on:

Initiative and Leadership – Participants are given information on the background of the family support movement, leadership, advocacy and the significance of self-advocacy, how to effectively advocate towards creating change and ways to influence funding and delivery systems.

Creating A Vision – Participants learn how to create a vision for your loved one and innovative ways to think about community living and family support, best practices and meaningful options. Families are supported to “imagine better” and to create a vision, with and for their family members, that becomes a guide for their leadership and advocacy.

Policy Making at the Local, State and Federal Level – family members receive information on how to develop networks with legislators and families, on how to access and control resources that affect family stress and satisfaction and how to use legislative change to procure resources.

Our one final day wrap-up session will focus on:

Taking Care of ourselves – Relax, laugh, and experience the value of taking care of you.

What could be more important than that? I came up with nothing. So I emailed the application.

This morning I received an e-mail thanking me for applying and asking for a little more information. Shortly after responding to that, I got a call. I am IN! Yay! I finally told Eric I had applied, celebrated with my birches and then shared with allllll of my facebook friends, of course!

One of my friends in Louisiana reminded me she had done something similar and described it as “life changing.” Then I realized that another friend from Minnesota had shared a similar program before and then a friend in Newfreaking Zealand said she had also done a similar program and that it was an international program. Well then! I was curious, also, when I decide to do things I like to convince EVERYONE that they should do it too! Come on! It will be so much fun!! Ahem. So, I did a little reading (on Wikipedia, naturally) and learned…

There are programs of this type in over 35 US states and several other countries. The program was developed in 1987 in Minnesota by the Govenor’s Council on Developmental Disabilities (GO Minnesota!!) and financed by the U.S. Administration on Developmental Disabilities (part of the U.S. Department of Health and Human Services.) It is part of a growing trend of empowering families and individuals with disabilities to advocate for themselves and their right to live life as fully as possible within their larger communities.

So I clicked around and gathered all of this in one spot so you too can go to a workshop like this one!

If you are interested in participating in the program in Massachusetts, please visit the Massachusetts Families Organizing for Change website for more details:

If you are interested in participating in a similar program where you live, please visit the Partners in Policymaking website to view the list of active programs complete with contact information for the coordinator for each location:

  • In the United States: Active Programs (click on the link, it will open a new window.)
  • Other Countries: Active Programs (click on the link, it will open a new window.)

Partners in Policymaking also offers 6 online courses if you are not able to attend the classes in person.

So. What are you waiting for? Sign up for a workshop, it will be fuuuuuuun! (If not “fun” exactly from a carrier who has anxiety perspective…it will be worth it.)

Today, we start again.

Today, we start again.

Melissa

Yesterday, Caleb turned 9. He had a party at school to celebrate and he loved it. Yesterday, I was looking at pictures of my smiling happy boy with his friends. Yesterday, for the first time, I didn’t meet one of his birthdays with a feeling of dread. Yesterday, I was not scared that another year had passed and that we were still stuck in Holland.

And then I learned that the extended trial of STX 209 is over. Done. We had heard rumors of money troubles but we all hoped for a solution and some advance notice. We didn’t get either.

I woke up this morning hoping that I was having another of those awful dreams I’ve been plagued with lately. The dreams where people are trying to hurt or kill me, after all, you couldn’t find a better way to hurt me than through my child…but it’s not a bad dream. I stood crying at the counter this morning setting out Caleb’s breakfast, which is always accompanied by a spoon of applesauce and his morning meds, knowing that we’re one dose closer to the end.

I would like to say I’m angry and ready to fight but the truth is, I’m lost. I don’t even know where to begin. I’m wracking my brain right now trying to find the answer. You cannot turn around in this town without bumping into either a Dunkin’ Donuts or a biotech firm. There are pharmaceutical companies of all sorts here and I’ve worked with many of them over the years as they’ve sought round after round of financing to keep afloat. There are private equity firms of all sorts here and, again, I’ve worked with many of them over the years as they provided round after round of financing to keep businesses like Seaside afloat. I’ve seen some of the most improbable saves and some of the most improbable failures. I know nothing in this business is guaranteed, there’s a lot of money here because it’s expensive work. Changing the world takes lots and lots of money.

But I’ve come up with nothing except this…there is someone out there who has the answer. They have the money and the heart to be our hero, we just need to find them. Please, please help me find them. Write to your members of congress, they know people! Tell your neighbor, your minister, your local paper…the more people we have looking the sooner we will find the one we need. I refuse, refuse, to believe that this is as far as the story goes. I’ve never expected a fairy tale ending, but this…this defies logic. We are almost there. In the face of incredible odds, Seaside has gotten us to the point where we can see the goal line…now we need that one person to stand up and either clear the way or give them a nice big push from behind.

One person. That’s it…please help me find that person. Please, if you have the resources to be that person…take your chance to be a hero.

We started our journey with this quote…

Oh, the Places You’ll Go!
by Dr. Seuss

You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they’re darked.
A place you could sprain both your elbow and chin!
Do you dare to stay out? Do you dare to go in?
How much can you lose? How much can you win?

And IF you go in, should you turn left or right…
or right-and-three-quarters? Or, maybe, not quite?
Or go around back and sneak in from behind?
Simple it’s not, I’m afraid you will find,
for a mind-maker-upper to make up his mind.

You can get so confused
that you’ll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed, I fear, toward a most useless place.

We may be lost in streets that are not marked just now but we won’t stay here long. I promised Caleb we were leaving The Waiting Place last October and I am not breaking that promise. Even if this isn’t the way we ultimately get there, we are done waiting. Done.

If you want to know what STX 209 has meant for us, read these posts: STX 209 – Phase II Trial

Wrapping up some loosish ends…

Wrapping up some loosish ends…

Melissa

Three weeks ago ((Srsly, can it really only have been three weeks since the Marathon bombing??)), I wrote about our chance to take fragile X awareness onto the field at Fenway Park. You can see story here (Today.) I am happy to report that all went well and Caleb went onto the field as hoped!

He needed a little extra love to get there…

But he totally did it! He even gave Wally (the Green Monster) a high five on his way onto the field.

I am so proud of how well he handled such an extraordinary event…I’m also pretty excited that he got to go on the field at his very first Fenway visit! I’ve been there quite a bit more than once, toured the park down to the laundry room and STILL haven’t been allowed on the grass!

I do have a secret though…you cannot share this with anyone…I made Eric get me a little souvenir…

Even though it’s probably enough to get him banned for life from Fenway, though I may have left that bit out when I asked him to do it, he did it. Such a team player!

In other follow up news…the circus is this weekend. See that story here (I’m not always that brave.) and here (Once again, I am reminded of what it means to have a community.).

Two of the three friends we asked have confirmed, we’ll know regarding the third today. I cannot believe we are doing this but we’ve set the stage as much as possible. We have aisle seats, as far away from the band as possible and 2-3 of his very best buds who can get him to do just about anything. Piece of cake, right? I’m actually a little excited even!