“Follow Your Heart!”

While looking at link-ups recommended by the women of the SITS Girls Facebook group, I came across the Pour your Heart Out linky by Shell from Things I Can’t Say. Shell has a great blog. Last week, she wrote a post for the linky entitled Do Your “It”. The message in her post was clear: follow your dreams. Don’t let yourself be held back by people who say that you can’t.

I immediately thought about my post about crafting. I have often been told that I shouldn’t try my hand at crafting, but I did, and, though I’m not particulalry successful, I enjoy it.

On the other hand, I’ve also often been told what I can do. People have told me that I can go to university and become a successful scientist if I stick to the right field. Yet I don’t want to become a scientist. I want to write and craft.

I have been overburdened at least as much as I’ve been underestimated. This is equally discouraging. When you fail time and time again despite being told that you “can”, you feel like a failure. At least I did. It often makes me eager to listen to the people who say that I “can’t”. At least I don’t disappoint them if I don’t try. Yet I disappoint myself.

One of Shell’s commandments is to follow your heart. I do this, or at least I try. I still have dreams that I feel kept from following because of the people who say that I can’t. Following a writing course, for example. I still have dreams that I do not follow because I’ve been pushed too hard in the past and failed, and now I believe I can’t. Finishing my intro to psychology course, for example. Yet this is not as strong a dream as it is an expectation. Really, I’m not too sure what following my heart entails, given all the “cans” and “can’ts” from the outside.

Ways to Unwind #TuesdayTen

Yesterday, my psychologist, the staff and I had a meeting to discuss how we could better cooperate. It was a good meeting, but still I was a bit anxious beforehand. We discussed ways in which we could keep the lines of communication open instead of getting stuck on negativity, and how the staff could help me prevent piling up stress. I do have a crisis prevention plan, but it is pretty useless once I’m already in the dark orange or red state. So preventing me from getting this stressed is key.

Today’s Tuesday Ten theme comes in a timely manner. It is Nationnal Hammock Day (in the U.S.). Having lay in a hammock a handful times on vacation, I can totally attest to its relaxing effects. Then again, we don’t have one ready here to lie in when I’m stressed, so I have to come up with other ways to relax. Here are ten:


  1. Writing. Writing has always been an activity I used to unwind. I was an avid storywriter in my teens, but unfortunately lost that skill. Since I got an Internet connection, I started writing for a wider audience. It can be stressful when I “have to” write a blog post, but it can be deeply relaxing when I write from my muse. I also continued writing for just me until I few years back, and really need to start the offline journal again.

  2. Some crafts. Like with writing, crafting can be frustrating. However, crafts that I find easy such as stringing beads on a wire or basic looming are quite a good way to focus my attention on something else while not needing so much concentration that it becomes frustrating.

  3. Fidgeting. I used to be reprimanded a lot for playing with my hair or fidgeting in other ways. I’ve basically stopped caring and my parents are not here to dictate that I cannot fidget anyway. I love playing with my handmde jewelry.

  4. Coffee. Okay, I know that caffeine isn’t supposed to be good when you want to relax, but I consider drinking a nice cuppa quite relaxing.

  5. Herbal tea. For a bit of balance when I’ve drunk too much coffee. Particularly chamomile tea has relaxing properties, but I usually blend different herbs because the act of brewing my own tea is relaxing in itself.

  6. Music. I don’t tend to listen to music while doing other things, such as writing. When I do listen to music, I usually “dance” to it as I listen to the lyrics. I find this quite a help in thinking without getting stressed.

  7. Talking it out. I find that talking about what makes me stressed helps when I worry a lot. I also find that a chat about something that interests me also helps me refocus my attention.

  8. Taking a shower or bath. I love bathing, and can’t fathom that I’ve never used the bathtub on my ward in over a year of being here. A hot shower (except when it’s hot outside like now) usually does the trick too.

  9. The Internet. I love to unwind online. I’m not sure whether it’s a blessing or a curse that most online games are not accessible to my screen reader. I however like playing mindless word games on Internet forums, too.

  10. Spending time outside. I practically cannot take walks outside on my own, but the nurses sometimes take me on walks. We also have a nice garden that I like to sit in when the weather is nice.


The Golden Spoons

Talking to Kids About Tragedies in the News

The first news coverage I remember registering consciously, was that surrounding Gulf War I in 1991 and seemingly simultaneously, something about Ukraine – probably the five-year anniversary of the Chernobyl nuclear disaster. I remember, because I thought at the time that Iraq, Iran and Quwait together formed Ukraine. I was five-years-old and didn’t have a clue about tragedies. Maybe I did ask questions, and maybe I was worried, as I often was later on when famine or disease in developing countries was discussed.

I was fifteen when 9/11 took place. I realized by this time that America was far away, so I didn’t feel any sadness or anxiety. Children in America, however, even those not directly impacted, often felt intense sadness and worry. Now a large tragedy didn’t impact my country when I was young – the largest tragedy affecting the Netherlands during my childhood was probably the Bijlmer airplane crash in 1992, which killed 43 people. Children of today, however, have to cope with a tragedy that is almost comparable in size to what 9/11 was for the U.S., ie. the shooting down of Malaysia Airlines flight 17, which was on its way from Amsterdam to Kuala Lumpur last Thursday when it was shot down over eastern Ukraine, killing all 298 passengers and flight personnel, including 193 Dutchpeople. Adults, at least those who’ve not lost family or friends, can put this tragedy into perspective, although with 9/11 in mind, even I am worried for its consequences. Children cannot do this. How do you help children cope with a tragedy like the MH17 crash?

I am focusing here on helping children not directly impacted by a tragedy. If a child has lost a family member or friend in a tragic way, they need extra help coping with the loss of a loved one as well as with the trauma of a tragedy like an accident or shooting. You can, however, reassure children who aren’t directly impacted that they are safe. In a book on coping with trauma I own, adult survivors of trauma are taught that the world isn’t safe, but it won’t get any more or less safe by worrying about it. That is not an effective strategy with non-traumatized children. They need to know that you as the parent, teacher or other adult in their life are there to protect them.

Common Sense Media advises keeping the news away from kids under seven. Preschoolers and Kindergartners are not ready to understand the news and will easily confuse fact with fantasy or fear. My parents had the radio on all the time when I was young, so I registered the Chernobyl and Gulf War news, but made really irrational connections. That being said, the Mayo Clinic recommends that parents do talk about tragedies to their kids, since they’ll likely have picked up on the news somehow anyway.

When kids get older, they start to hear about news tragedies or events from their friends. They still may see news as closer to home or more common than it is, particularly if kids are sensitive. Children between seven and twelve may still make logical errors. For example, a child might worry about their family in Amsterdam because flight MH17 took off there.

At elementary school age, you may start to explain the context of news, especially if your child is intellectually and emotionally mature. You might explain that people have different views and that news programs compete for viewers. You can also start to explain the basics of political or religious conflict. At this point, kids have a strong sense of right and wrong, in the sense that it is all-or-nothing. Therefore, you should be careful not to generalize.

When a child becomes a teen, they will likely start finding the news on their own, without your supervision. Discussing the news with them will give you as the parent a good insight into their developing knowledge and maturity. Common Sense Media says that teens will understand that their lives could’ve been impacted by such tragedies as terrorist attacks. Therefore, it is important to discuss their views and reassure them without dismissing their feelings. They may also want to help people directly affected.

Above all, when talking to a child about a tragedy, the Mayo Clinic recommends telling the truth. Explain the basics and don’t go into too much detail. Avoid speculation on what might be the consequences of the tragedy. Listen carefully to your child for misconceptions, misinformation or underlying fears. Reassure them that you are there for them to keep them safe. If your child asks the same question repeatedly, it’s possible that they just need reassurance.

Is Crafting Suitable for the Blind?

I’ve contracted the loom band virus. Looming, for those who don’t know, is a way of making jewelry and accessories out of rubber bands. I’ve so far only managed to be able to use the most basic technique, but am loving it and trying out new techniques that I basically think out myself. I can’t access loom band tutorials as they are mostly videos. YouTube is still blocked on my computer to save on bandwidth, and if it weren’t, I’d have to watch a ton of videos to find out which have enough verbal content that I can follow along.

Fortunately, I’ve been helped by a few lovely people in Facebook looming groups. The fellow patient who taught me the most basic technique also offered to lend me her loom band book, so that I can scan (part of) it and see if just the text is enough. Another person offered to type out the verbal content of video instructions or send me a PDF file of the book. The PDF file is an image and the file size is over 100MB, so even though I could convert the image to text using OCR software if I were able to download it, I cannot currently download the file. Yet another person is still thinking of ways she could help me figure stuff out.

Unfortunately, as with any crafting hobby, I’ve gotten the occasional comment that looming probably isn’t suitable for the blind. I do not know this yet, as I have so far only mastered the most basic technique and have gotten stuck on some other crafts too if I tried to go more advanced. I don’t like instant adoration when I disclose in a crafting group that I am blind, either. When people haven’t seen my work, they cannot know whether it is poor, fair or good by non-disabled standards or by their standatds of what a blind person should be able to accomplish. Because of this, I do understand the curious group member’s question whether a craft isn’t too hard for a blind person. Probably I take it too personally when I see it as discouragement.

It may be kind of odd in this respect that I take gentle criticism better than instant adoration or questions about my competency before I’ve shown my work. I remember in early 2013 I sent out a totally rubbish card in a swap, and the recipient happened to be the swap group owner. She sent me a private message explaining that my card was not of sufficient quality for a swap, but also offering to give me tips on how to make better cards. That was a lot easier to handle than the message I received from another member, who said before she’d seen any of my cards that she would never make cards again if she went blind.

Generally, it seems to be that the more substance criticism or compliments have, the better I handle them. For example, I received a message on a stamping group from a person who explained in detail why stamping most likely wouldn’t be suitable for a blind person and offering feedback on the stamped images I’d sent to the group. That helped me make the choice to give up stamping before I’d bought tons of supplies. I myself used a similar approach when a blind friend of mine wantedd to start making jewelry. I explained what is needed to make jewelry and which parts of it she could likely do herself and which she’d probably need sighted help with. I offered to send her some supplies to play with, which I still need to do. She can decide for herself whether jewelry-making is suitable for her, but I can help her with feedback.

“All Kids Do That.”

Kiddo’s Mom over at Autism with a Side of Fries wrote an interesting post titled “All Kids Do That”. The comment that “all kids” do something, is meant to reassure parents of disabled children, or disabled children themselves, that they aren’t all that different. I remember when I was around eighteen, my parents told me that 99% of my schoolmates had the exact same problems I did. I wasn’t different, except for being above-average intelligent (which, given that I went to grammar school, 99% of my schoolmates were, too). And oh sure, I was blind. Maybe that, or my reaction to it, explained all my oddities. Or maybe not.

The thing is, it doesn’t help a parent to hear that they shouldn’t worry about something they know is not typical. It doesn’t help a disabled teen, either. Of course, everyone has some quirks, but most likely you do not know that the disabled child whom or whose parents you try to reassure has many more problems than the behavior you’re currently seeing.

Also, you do not realize how much effort it takes for a disabled child to appear more or less typical. As Kiddo’s Mom says, it took lots of therapy for her son to be able to eat properly, swim or sing. Hopefully, Kiddo’s Mom delights in these results, but it isn’t your job as a stranger to callously assume Kiddo isn’t “really” autistic (or not “that severely autistic”) because he acts so appropriately. Kiddo’s Mom likely doesn’t even realize how much effort Kiddo pours into it, as my parents or staff don’t realize this in my case. Certainly you, being the family friend or relative, or even a complete stranger, do not know.

It is easy to assume that a disabled person isn’t “really” disabled, or isn’t as disabled as they or their parents claim to be, by observing a single behavior. I’ve been told countless times that I should stop posting about my self-care difficulties and meltdowns because I’m not like the commenter’s child, simply because I can write. Sure, there are difficulties that aren’t due to my disabilities at all. My inability to come up with some words in English is more attributable to my being a non-native than to any of my disabilities, and even native speakers of English sometimes have trouble coming up with words.

A disabled person is a person, too. Like Kiddo’s Mom says, sometimes parents of typical kids are slightly shocked when she says Kiddo does something their kids do, too. The underlying assumption is tht a disabled child’s every behavior should be related to their disability. In reality, it isn’t. I am disabled, but I am more than my disabilities. Just because “all kids do that”, doesn’t make me non-disabled, and just because I do something your typical relative does too, doesn’t mean they’re acting like a disabled person.

We Don’t Stop Playing Because We Grow Old

This week’s spin cycle theme is “grow”. Ginny Marie over at Lemon Drop Pie asks: “Are your kids growing like weeds? Are the weeds growing in your garden? Does your garden have vegetables growing? Or are the veggies in your fridge started to grow mold?” Since I don’t have kids, a garden or a fridge, I need to invent another topic to post about. After reading Ginny Marie’s contribution, I thought of something. I want to write about growing up, too, but I struggle. As a kid, I always feared growing up, because it’d mean I needed to stop playing.

For a long time, from around age twelve on, I thought playing meant you were childish and being childish meant you were bad. When I was eleven, the school psychologist wanted me to become a residential student at the school for the blind. My mother explained to me that I was troubled because I had too many toys. I till this day don’t see the connection. Sure, I had quite the toy collection, but so did other kids. Sure, I had trouble making friends, and my interests were not the same as those of my age peers. I doubt they were all into books, which my mother said I had to be into in order to fit in. Books or music. While my age peers in the neighborhood were into music, I didn’t fit in once I listened to the music they were into and had Backstreet Boys posters covering my walls. Not that this period lasted long, because I’d quickly had enough.

Besides, I wasn’t troubled because I had few friends. That wasn’t the reason the school psychologist wanted to institutionalize me. The reason was my meltdowns and tantrums, and I have no clue what they had to do with toys. Sure, I had a tantrum when my Barbie doll’s leg broke off, but I had and still have similar outbursts when my computer crashes. Maybe that means computers aren’t the right interest either.

However, I internalized the idea that to play is to be childish and to be childish is bad. I remember when I was thirteen I kept track of my behavior problems, like tantrums, and soon added any sort of childlike behavior, including playing with Barbie dolls. I was going to regular education in a month, and it had become very clear to me that regular kids my age don’t play with Barbie dolls.

Once at regular school, I listened to the right music and read the right books. It didn’t change my outcast status. It didn’t lessen my meltdowns. It didn’t make me not fear growing up. It did make me grow old. We don’t stop playing because we grow old, after all, but we grow old because we stop playing, according to George Bernard Shaw.

Post Comment Love

Parents’ Dreams and Expectations for Their Disabled Children

Today, Ellen from Love That Max wrote about wondering what her disabled son would do when he grows up. I wrote about this last week. As I said then, I knew early on that I’d become a normal or even above-average college student and later employee when I grew up. Up till age eighteen at least I didn’t show any inkling of thinking I’d not meet this expectation. I know that I had worries at night about burning out at my first job (as a teacher) and returning to the workforce several years later at an entry-level administrative position. I didn’t share these thoughts. I shared my dreams of going to the United States on a college exchange student visa and never returning. Cause, you know, with affirmative action and all my minority statuses, I’d surely get a green card. Sure!

Ellen shares her son’s similarly big dreams. Max will become a fireman when he grows up, and not only that, but he’ll live at the fire station. Ellen knows this is an unrealistic dream, but then again, maybe not. She refers to a news story about a man with an intellectual disability practically living at a firehouse. In similar ways, my parents probably knew the moving to the U.S. dream was unrealistic, but they tried to keep a positive attitude. I appreciate that

What I also want to say I appreciate, is that Ellen doesn’t turn Max’s big dreams into expectatiosn for him. I don’t know whether my parents truly believed I could go to the U.S., but they made it seem lke they did and they were half-expecting me to actually pursue this path.

With disabled children, more so than with non-disabled children, you need to walk the fine line between not encouraging them enough to dreaam and follow their dreams, and turning their biggest dreams into your lowest expectations. I like it that my parents looked up the subsequent cities I was obsessed with living in once in the United States and encouraged me to learn about these places. That is encouraging a child to dream. However, I’d have liked it if my parents helped me do some realistic planning. This doesn’t mean saying: “Girl, you’ll go live in an institution and do day activities there.” I’m pretty sure that, with the right transition planning from me, my parents and the staff at the training home I lived in for eighteen months, I could’ve come far closer to my dreams than I’m now. Then again, I’m relatively happy now – happier than I was when dreaming of the United States.

One last thought, which I’m struggling with. Your idea of success as a parent is not the only conceivable norm. I know that as parents, you have limits too, and, particularly if your child is above eighteen (or 21), you have a right to these limits. You don’t have an obligation to care for your child past this age. In this sense, I can only hope that parents of disabled children have an appropriate transition plan in place before their child turns eighteen. I can only hope they accept their children no matter their path to success, but I still understand that this is not something a child, disabled or not, can enforce.

#PowerMonday: Pondering Strength

Over at Strength adn Sunshine, Rebecca P. writes power Monday, in which she ponders the nature of strength. She considers herself physically and emotionally strong. I’d like to focus in this post on emotional strength, because I possess little physical strength.

What does it take to be emotionally strong? I’m generally seen as emotionally strong because I’ve been through a lot and made it through. I’m seen as perseverant by some. Others, however, don’t see me as such, because, if I truly were perseverant, I’d have overcome my disabilities and would live independently. Some people see me as someone who gives up particularly soon.

I’d like to think of myself as strong. Then again, aren’t the circumstances I’ve survived merely that, circumstances? In my #AskAwayFriday post last week, I said thaat the greatest challenge I’ve overcome is surviving prematurity. That being said, didn’t the doctors just keep me alive? I can’t know whether I showed any will to survive. Does this assumption that I’m strong for surviving, not condemn the non-survivors for being weak?

I struggle with the idea of emotional strength as a positive attribute, also, because it condemns the mentally ill. We’re not resilient, almost by definition, because we suffer from depression, anxiety or the like. I see people in my institution who are particularly passive or negative. Does this mean they don’t have strength, or does it merely mean they’re suffering from their illness?

There are these sayings going around. “God doesn’t give you more than you can handle.” In this sense, God is seen as the cause of our suffering, and we’re seen as the cause of our overcoming of it. This is probably a way to sustain our sense of self, believing we’re strong for overcoming something that life (or God) put us through. I’m more than happy to believe I’m strong for having survived premature birth, childhood trauma, disability, and other challenges. It allows me to believe in myself.

Breastfeeding in Public: It’s a Women’s Right

I follow a fair number of Mom bloggers, both through my feed reader and on Twitter. I also participate in a number of online blog and Twitter events. Through one, I got to know Jen from Liv, Laugh, Love. I found her through a Twitter follow thread on Facebook, and we were asked to engage with the particcipating tweeps. This could be as simple as retweeting some of their tweets, which I did with some, but it could also be starting real conversation. Jen’s first tweet I came across mentioned her blog post on public breastfeeding. Jen is a passionate breastfeeding advocate. I am not, and yet I wholeheartedly agree with her point in this post.

I don’t honestly think that “breast is best”. For some, it is, but other mothers cannot breastfeed due to taking certain medications, not being able to nurse a baby for whatever reason, etc. Still others choose not to breastfeed, and that’s fine with me too. There is probably research backing both sides of the breastfeeding/formula debate.

That being said, this post is about whether women are allowed to breastfeed in public, and my answer is a resounding “YES”. It’s not about whether breast milk is better than formula. It’s about whether women should be allowed to expose their boobs. And I would say as general rule they should.

I can see why exposure of some body parts would not be allowed. Genitalia, notably. Still, this is more to do with the nature of the exposure than the nature of the body part. If a person exposes their genitalia, it’s usually to shock other people. When a woman shoves her breasts in someone’s face so to speak, same. That is sexual harassment. However, breastfeeding in public isn’t intended to shock others. It merely serves the purpose of breastfeeding.

Also, of course, men expose their chests all the time, but that’s not a problem because they don’t have breasts, I suppose. This may sound logical, but in reality, women are just held to a higher standard of cover-up than men. A fomrer fellow patient was one day caught wearing only underwear and a T-shirt. The others commented that, had she been male, it would’ve been acceptable. Why? I believe male genitalia get more exposed when covered only by underwear than female genitalia. The only thing I can make of it is that women are not supposed to expose themselves, while men can go pretty far before their self-exposure is seen as indecent.

#AskAwayFriday for July 4, 2014

Today, I am pleased to participate in #AskAwayFriday again. This time, I partnered up with Carol Graham from Battered Hope. I know some people say I’ve overcome a lot, but when I read Carol’s blog, I was astonished at all that she’d endured and how she still manages to keep such a positive attitude. Check out her blog and get to know her through the questions I asked her. Below are my answers to Carol’s questions.

1. You were born the same year as my daughter. She was two months premature. My heart reaches out to you and I know you have had some incredible challenges in your young life. What challenge are you the most proud of overcoming?
Surviving prematurity against all odds. That may not be something I remember, but without overcoming this challenge, I wouldn’t be here.

2. As an advocate, what are some ways that you have raised awareness to help the mentally ill?
Mostly blogging. I’ve also been in a recovery group, which is a group where mentally ill people help each other on the path to recovery. Recovery, here, is not cure, but living a full life in spite of mental illness.

3. Do you have any brothers or sisters? If so, please tell me about them.
I have one sister. She is two years younger than me, so now she’s 26. She is about to earn her Master’s degree in history, for which I admire and envy her. I don’t really know what else to say about her.

4. You have been living in a facility since 2007. What is the most difficult part of institutional life?
Having the staff make decisions about my daily life. Institutions now claim to be all about rehabilitation, which in theory means the patient directs their own life. In practice, it means staff tell you to be independent in practical skills but still make important decisions for you.

5. What is the best part?
The day activities.

6. Do you have any hobbies other than surfing online?
Writing of course, but also reading non-fiction and autobiographies (I’ll be sure to check if yours is available as an ebook). Oh and crafts. I love cardmaking, polymer clay and jewelry making.

7. If you were not limited by finances or any disability, how would you like to help others who have experienced similar anxieties?
I would start my ideal supported housing and working project. It would be similar to workhomes for autistic people (where they can do day activities close to home), but it would be all about clients truly directing their own lives, with staff available to meet the clients’ needs and help them have a comfortable (as opposed to productive) life.

8. You said that you were legally blind. Do you have a guide dog?
No. I would like to get one someday though. The largest guide dog school in the Netherlands also trains service dogs for autistic people, so I’d like to get a guide dog who is also an autism service dog.

9. I admire your courage and positive attitude towards life. How do you encourage people with similar problems?
I don’t know that I have all that positive an attitude. Honestly, I have no clue how I encourage others. If they’re inspired by my writing, that’s great.

10. And finally, a question I ask anyone I meet for the first time — tell me about yourself in FIVE words.
I am creative and imaginative.