Month: February 2014

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.

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.” 😉

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.

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…