My child is not a puppet.

My child is not a puppet.

I’ve been avoiding this topic for yeeeeaaaars because I’m fairly sure I’m about to upset more than a few of my fragile X friends. I hate conflict. I like my friends. So this post is really, really hard to write. My palms are sweaty, in fact, but I want to share my thoughts on the topic.

I’m not sure when I first heard the term, “fraggle,” it was early on in my fragile X journey however. From the very first time I heard it, it has grated on my nerves. I didn’t understand why, initially. It is, on the surface, a cutesy way of referring to our kids and it is always used affectionately. So what is my problem? I decided I was oversensitive and dropped it.

But still, every time I read it, I would cringe inside a little. It does not have nearly the power of the r-word, but it makes me physically uncomfortable. It seemed weird for it to bother me so much but I did start broaching the subject with some of my friends. I still didn’t have the history to feel like I should have a voice on the subject, I was a newbie and didn’t want to make waves.

We are 2 months shy of the 8th anniversary of Caleb’s diagnosis though and it still bothers me. So, I’ve decided I want to share my thoughts on the topic, not because I want to convince anyone that they are wrong but because I would like people to really think about the word. If you decide to consciously keep using it, that’s fine…I won’t hold it against you. I also won’t “like” your post or re-tweet your posts on social media and this is why…

  1. Fraggle Rock, was one of my favorite shows as a child. It was an amazing fantasy world and I loved the characters. But they’re puppets. And my child is not. He’s a little boy.
  2. By referring to a child as a “fraggle” you are identifying them by their disorder. My son is so much more than fragile X syndrome. He is a person, like you…like me. When I describe my son, fragile X is not how I describe him.
  3. By referring to a child with the cutesy name of “fraggle” it implies lightheartedness. Fragile X isn’t cute. My SON is. YOUR kids are. But fragile X is not. It’s hard to live with as a parent and I know it’s hard for my son to live with. I’ve watched him get lost to the sensory overload and the anxiety that fragile X brings and it’s NOT cute. It’s frightening and overwhelming to him and it’s so, so sad and overwhelming to witness as a parent.
  4. The term “fraggle” does not bring to mind dignity. What I want more than anything in this world is for my son to be treated with respect and dignity. I will spend the rest of my life fighting to make that so and striving to make it so even after I’m gone…calling him a “fraggle” undermines that.

So, if you use the term, just think about it. If you’re OK with how it sounds, you go with your bad self. But words do have power and when we use our words, I believe, we should always be striving to lift people up…not marginalize them.

I would encourage you to make an effort to use “people-first” language. The pictures we paint with our words can influence how our kids see themselves and how others see them. It’s not about being “politically correct.” It’s about being respectful. It’s about honoring our kids’ dignity and letting the world know with our words that they need to honor that as well.


Do you hear voices?

Do you hear voices?

I have a few that I hear, don’t start Googling prescriptions for me just yet…hear me out.

There are voices in my head. Mean voices, voices that undermine my confidence, voices that whisper almost constantly but turn into shouts if I do something that challenges them. I’ve always believed that everyone has these voices. The voices that say, “You’re so fat!” or “Just shut up, no one wants to hear it!” or “You always ruin everything!” or “You don’t matter, your opinions don’t matter.”

I hate those voices…but I also am very, very aware that those voices are me. I’m saying those things, my brain is coming up with this! See…no need for (additional) medication here!

When I’ve told people about these things they tell me things like, “Just change the channel!” “Distract yourself.” “Just stop. You are not fat/annoying/stupid/useless.” And none of that has helped me, not one little bit. Because, how do I fight myself? I can’t just walk away from those voices, they are very, very loud…and persistent. There are times they are no where to be found and life is all lightness and unicorns, so clearly I’m failing somehow when they drown out everything else. Which all just makes me feel worse.

During the leadership session a couple weeks back, we spent an entire day discussing leadership. What is it? What is it not? What makes a leader? Why do people lead?” All very good questions to consider and very, very good questions to discuss with other people because you might be surprised to hear that qualities YOU have are leadership qualities in their eyes.

Before we got into the questions, though, the presenter had us do a little exercise. She told us, those voices, they are our inner saboteurs. They are the things that hold us back, that keep us quiet when we have an idea to share, that make us not try things we want to try. She said there are a very, very few people who claim not to have them. That may be true but it’s also possible those people just aren’t listening very well 😉

So…the exercise. We were told to name it. Don’t name it after someone you know. I called mine “The Black Hole” because it sucks my motivation away. Then we were told to write down what that voice tells you, mine tells me “You will just fail, why even try?” Nasty little hole. Finally, we were told to draw what we think that voice would look like. Mine looked like a black circle. Shocking.

Then we had to share what those voices say, because acknowledging them out loud takes away some of their power. One of my favorite quotes is “In the absence of light, darkness reigns supreme.” As hard as it is to make yourself vulnerable, the strength from finding that one person who says “ME TOO!” is immeasurable. I will say, try taking a calculated risk first, approach someone you already know is an empathetic type of person. Don’t do something crazy and post it out on the internet for the whole world to read. Not straight away, at least. *ahem*

She concluded the exercise by telling us to come up with a response to the voice. She has told her doubting voice to stand in the hall while she is presenting!

It all may seem silly but by putting a face and a name to it we are separating those thoughts from ourselves. They are intrusive and it helps put them aside. When that voice starts creeping into my head “You’re a failure, you’ll always be a failure, don’t even try, no one cares…” I’ve taken to telling it “See you next Tuesday.” which is completely vulgar but makes me laugh and if I’m laughing at that voice, it has no power. None. It’s let me set into motion some projects that I’ve been wanting to tackle but couldn’t manage to get started.

Give it a try, you might be pleasantly surprised how well it works. Now I just need to figure out how to handle “Skinny Minny” and “Sobbing Sue.” 😉



My answer to that big question.

My answer to that big question.

I asked a BIG QUESTION yesterday, there were lots of replies so don’t miss the comments if you haven’t already checked them out. I found the replies very interesting, they covered the spectrum from keeping them home and protected to dreaming of a new home for them while keeping them protected. It makes sense, our kids have a spectrum of needs and strengths so clearly their living options will need to cover the spectrum too.

The need to protect, though, cuts deeply into a parent’s thoughts everyday, not just parents of kids with special needs. We fortunate few, who have a child with an innocence that will follow them through their entire lives, may worry a bit extra. Any child can walk out the door in the morning and go to school to be bullied. Most kids have a choice, they can accept it, they can fight back alone or they can seek out help. It’s our jobs to teach them that they have options, to teach them the strength they need to protect themselves in the world when we’re gone.

My child has no choice. He cannot seek help. If the bullying is subtle (and haven’t we all met that person who can make you feel badly about yourself while smiling and putting on a friendly face to the rest of the world?) it could go unnoticed for…ever. Caleb cannot tell me if someone is hurting his feelings or hurting him physically. I rely on my gut instincts and on the people who are caring for him when I am not there to watch over him vigilantly. Sometimes its the people we are trusting to care for our kids that are harming them, sometimes they’re so overworked that they just don’t see it happening.

So, in my case, fear plays a very large roll in how I will answer this question. That is just awful…knowing that statistically my child is likely to be a victim during his lifetime because of his special needs…knowing that I won’t always be there to stop it…knowing that some day he will be alone in this world without a mother & father who would do anything for him. Since Caleb’s diagnosis until the moment I take my last breath I will have this fear constantly eating away at me.


Unless we make big plans for this child. When Caleb was diagnosed I thought we were saying goodbye to a lot of things. College, marriage, grandkids, retirement…just to name a few. I’ve come a long way since then.

I want Caleb to be college educated. I want Caleb to be able to wash his own dishes & clothes, cook meals for himself and others, to have friends. I want Caleb to get paid a living wage to do a job that he enjoys. I want Caleb to have health care. I want Caleb to feel safe, loved and important. THAT is what I want Caleb’s adult life to be. It’s probably not very different from what all parents want for their kids but it’s a massive undertaking for our family. This won’t just happen because we expect it of him or because we want it for him. We will have to make it happen. It will take time, perseverance and money but it’s not out of reach.

The details of what his adult life will look like are less important to me right now. A few years ago college looked impossible but today there are programs springing up around the country allowing kids with special needs to enjoy the independence and fun of college while becoming life long learners. I refuse to write off any possibilities for him because I cannot see into the future. Will there be marriage in his future? I don’t know, I want him to find love…if he does find that love, I won’t let anyone stand in the way of him being allowed to get married if that’s his choice.

What I don’t want is for Caleb to be apart from life. I want him to be one part of a diverse community. And I want him safe. Right now I picture a combination of the real world and a world of his own. A place to live that is safe, people to watch over him when we cannot and a life out in that big, bad scary world…just like all the other kids. We all have to take risks, we all stumble and we all hurt at some point in our lives…it’s what makes the joyous and happy times so much…more.

So, as scary as it is, as choking as that fear can be, I know that the only way Caleb can live the type of life I want for him is for me to be willing to take those risks. If I want a normal life for him, I need to take normal risks for him…and allow him to take the normal risks himself.


I’m going to ask you a big question.

I’m going to ask you a big question.

This topic comes up over and over again amongst parents of children with special needs…what happens when they are no longer “children?” What happens when FBAs, evaluations and IEPs are behind us?

Some of us dream of an island far, far away from the rest of the world where we could just be with other fragile X families. Some of us dream of creating our own communities and some of us dream of our current communities being fully open, understanding and supportive of our children.

So I’m going to ask you this…if money were no object, what would your child’s adult life look like?

  • Where would they live?
  • Who would they live with?
  • Where would they work?
  • What kinds of activities would be open to them?
  • What kinds of services would be available?
  • What kinds of therapies would be available?

I’ve been contacted by someone who dreams of opening a program for adults with special needs and she wants to know what parents want. It can’t become reality until we dream it, so let’s help her out…

Are you a leader?

Are you a leader?

Back in December I signed up for a Family Leadership Series organized by a local group, Massachusetts Families Organizing for Change. It took a bit of positive self-talk before I decided to go for it but once the decision was made I was excited! Until last week when the time came for me to actually get out of the truck and walk into the hotel. Then I was just nauseated. But still, I did it. Mostly because Eric wouldn’t unlock the doors to let me back in (Kidding! I didn’t even bother trying because I knew better. He would have peeled out laughing and blowing encouraging kisses in my general direction.)

As I sat in a conference chair, shuffling through the handouts and waiting for the fun to begin I began second guessing myself…What was I thinking? I’m not a leader! Sure, I’m a Community Support leader for the NFXF but that is a technicality…no one else wanted to do it!

Leaders are decisive, they’re visionary, they’re confident, they’re motivated, they’re persistent…all things that I am NOT. I’m not. Decisions paralyze me, I’m not that smart, I’m definitely not that confident, I’m lazy and I give up when things get too hard. I’ve always been that way. I will always be that way. Who was I kidding? My hands were shaking so hard I kept spilling my cup of tea when I tried to get a drink. LEADERS DO NOT SHAKE. I was a fraud and *shit* they’d already started…too late to sneak out.

I looked at the first item on the agenda after the introductory words and saw…introductions, for the next 2 hours. The coordinator finished her welcome speech, which I’m sure was inspiring and motivating but I was too busy freaking out to listen. Our next instructions were that we were to stand up and introduce ourselves, we each had 3 minutes, oh…and name one of your leadership qualities. Fuckfuckfuckfuckfuck…I had just spent the last 10 minutes listing all the ways in which I was NOT a leader. I’m NOT A LEADER! I was going to be exposed in first hour, great.

Then I noticed it was quiet…and the very nice couple next to me was sitting down, wait, when had they stood up? WHY WERE THEY ALLOWED TO GO TOGETHER?? I should have had another 3 minutes! No fair going together, I thought I’d have more time.

I heard someone laugh. Shit. I’d said that last sentence out loud. *insert nervous laughter* while I stand up slowly. I know I said my name, I know I said Caleb’s name and I know I said fragile X…I even said a couple facts about fragile X…then it was time. “My leadership quality is….I’m bossy.” People laughed, I sank back into my chair and I heard the coordinator say, “Oh, that’s right…the others hadn’t said a leadership quality, let’s go back to them!” ARE YOU KIDDING ME?? If I’d been listening I would have snuck right on past it too. So typical.

Once past that little test, I was able to relax and listen to the rest of the introductions. I learned a lot of things about the other participants but two things stuck out at me: 1. They were all there for the same reason I was, to help their children and 2. They weren’t all that convinced they were leaders either. None of us felt all that confident in our “leadership quality,” many responded as if their answer was really a question. I would make it through the first few hours at least.

I made it through the first break, a history lesson on the organization and then hit lunch. I was the first person in line so I was able to get lunch, grab a drink and sit down at one of the 4 tables…it’s way easier to be the first to sit down when ALL of the tables are empty, btw. Score! Lunch was fine, our mouths were full…most of the people at the table were able to start conversations easily with total strangers so the pressure there was off.

I looked at the agenda again…another history lesson, this time on disability policies through the years, another break, a parent panel, dinner and finally art therapy… I was going to make it through the entire first day! Piece of cake.

The history of disability policies was not a piece of cake but it deserves a post of it’s own.

The parent panel was nice, two graduates of the program spoke, but it really just emphasized that I didn’t belong here. These were superstars…seriously, both have had fellowships since they graduated the leadership series to study disability issues. One of them is a documentary filmmaker who won an Emmy for a documentary that aired on HBO. (Have You Seen Andy? If you’re curious.) And for her fellowship she conceived and filmed a ten video series on Down Syndrome called “My Great Story” in partnership with the National Down Syndrome Society. Yeah. I did not belong here with them. *sigh*

Dinner was hard too, I was the LAST to sit down this time which had my anxiety through the roof. I stared at my dinner the entire time and snuck away as quickly as possible. I didn’t say a word to anyone at the table.

I was pretty disheartened and sent a few whiny texts to Holly and Eric while I contemplated skipping the art therapy session. Honestly…my art skills are non-existent. I already felt like a failure and really, really didn’t want to add embarrassment on top of it. Ugh. I went anyway.

The art therapy session was unexpectedly fun! It was informative and generated a lot of laughter. Most of us were nervous about our lack of artistic talent but it so wasn’t the point. In fact, some of the best ones were the ones where the people had to explain what we were looking at. It was very revealing. By the end of the session, everyone was sharing their drawings and laughing with the people at their tables. It was a great icebreaker.

A few people decided to go to the hotel bar after the last session but I’d been holding it together (mostly) for 12 hours at that point, I was done and there was not going to be any benefit to adding a glass of wine on top of my exhaustion. I felt so relieved to end that first day.

Just before turning out the light, I glanced at one of the drawings I’d done.

I’m not overly proud of the technique, my head is freakishly small and it looks like I’m wearing fish for shoes, but drawing a picture of yourself in the rain tells you something about how you handle stress. I was the only person to not draw myself alone in the rain. I had Caleb with me and I would have had Eric too if I hadn’t run out of time. And, I was holding the umbrella directly over Caleb, shielding him from the rain. That may not always be the truth, but it’s the truth of how I want to be…of how I strive to be every day.

I was still pretty sure that the answer to the question, “Are you a leader?” was still no. But I was also pretty sure that my instincts…my nature…is one of protectiveness toward the one I love the most and that made me proud enough.

Which are you?

Which are you?

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.