Rockslide.

March 27, 2014Melissa

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.

March 25, 2014Melissa

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

March 10, 2014Melissa

At 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!

My child is not a puppet.

February 21, 2014Melissa

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…

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.
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.
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.
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?

February 19, 2014February 19, 2014Melissa

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.

February 13, 2014Melissa

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.

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.

February 12, 2014Melissa

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?

February 3, 2014Melissa

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?

February 2, 2014February 3, 2014Melissa

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.

BasicallyFX

Life with Fragile X Syndrome