My Ideal Social Networking Site

A few days ago, I came across a writing prompt for NaBloPoMo asking bloggers to describe their ideal social networking site. Suppose you got unlimited funds and a handful of tech guys to design it for you, what would it look like? Now I’ve actually been looking for a social networking site that is, well, ideal for me, so I have a pretty clear image of what I would want it to be like. Don’t worry: I don’t have money and I don’t have tech skills, so it’s unlikely to ever get off the ground.

My ideal social network would have a journaling/blogging feature as the centerpiece. The design of the journaling feature would be similar to the old LiveJournal or the current DreamWidth. I know that those who don’t use a screen reader probably don’t know what I mean, so here goes. I mean that all features of the journal, like recent entries, archive, profile page with interests and such, are easily accessible. No annoying mouseover stuff like the current LiveJournal seems to use. I mean, when you go to your or someone else’s profile page on LJ, you only see their bio, the people they have added as friends and the communities they’re members of. In order to see their interests, for example, you need to slide your mouse over the bio thingy, or something. In any case I haven’t figured out how to access interests, friends of, etc. On DreamWidth and the old LJ, these are/were easily viewable directly from a person’s profile page.

The journaling feature would, of course, incorporate full HTML editing. You’d be surprised most current online diary sites don’t have this feature. The entries would also be organizable by categories and tags as on WordPress.

Then, people would get a profile page. It would look similar to the LiveJournal or DreamWidth profile pages, with the person’s bio, external services such as Twitter, Facebook and Instagram, and a clickable list of interests which would connect users to other users. Searching by name, bio, interests, etc. would all be standard – on LJ, you need a paid account to search the directory.

People would also be able to create photo albums, from which they can link to their journal or which stand on their own. Again, this is similar to LiveJournal, only on LJ you need to pay for a “scrapbook”.

I’d also like to include groups similar to Facebook groups. In addition, I’d like users to be able to create writing circles. These are similar to what the Open Diary used to have: you post something to your own journal, but link it up with others writing on the same topic. These circles would, however, be moderated by users in a way much like link-ups are on blogs. The circle moderators would be able to create writing prompts for their circles.

Then, there’d be status updates and a personal messaging system as on Facebook. Lastly, I’d include a social bookmarking feature which is similar to Delicious. No images required like on Pinterest – one of the reasons I hate Pinterest is that I can’t pin my own blog posts as they don’t include images.

The entire social network would meet web accessibility standards. I was going to say “of course”, but then I realized my blog doesn’t meet these standards, so yeah. Privacy would also be important. Given that I would be allocated unlimited funds according to the prompt, there’d be no need for ads. If there are to be ads, they’re going to be non-personalized. People would register with a user name and the site would only display their full name (or a display name) on their profile if they choose so. On each item they post (journal entry, photo, etc) they’d be allowed to select the privacy options of “public (including search engines)”, “registered users”, “friends” or “private”. They’d also be able to set minimum privacy settings on their journal, photo collection or individual photo albums.

Unfortunately, the prompt didn’t say I’d be allocated a number of admins to watch that no illegal or otherwise inappropriate content is displayed on my platform. I’d hire these folks with my unlimited funds though. if I were to design this social networking site, after all, I’d want to sit on my butt after the platform had launched and just play with it. No moderation duties for me please.

A Letter to the Future

This week’s prompt from Mumturnedmom is “a letter”. I have written several posts that are letters or that are about writing letters on this blog so far. Rather than link up an old post, however, I’m going to take on a new challenge and write a letter… to the future. There is or at least used to be this site called FutureMe, where you could write a letter and have it E-mailed to yourself on a specific date in the future. Writing letters to the future is more challenging than writing letters to the past, which I already did on this blog. After all, I know what the past was like, and I don’t know what the future will be like. However, here’s my attempt at a letter to myself ten years from now.

Dear Astrid,

How are you? I am doing okay, but I hope you’re doing even better. Remember me? It’s your 28-year-old self. You know, the one with all the mental health struggles, residing in an institution. I hope you’re doing better in the mental health department than I am.

Where do you live now? Do you still live in the small town large institution? Or have you moved on towards living with your husband? I hope you’re still married to him and will be for many years to come.

Are Harry and Barry, our pet cats, as mischievous with you as they are with me now? I hope not. Actually, I hope that they’ve grown into the kind of quiet cat my parents own. Then again, chances are slim, as Morse was a lot quieter when he was a kitten than Harry and Barry ever were.

Do you, at age 38, still miss out on being a mother, perhaps even more than I do? Or do you feel at peace with childlessness now? Of course, since I don’t know, maybe you actually have a child! That would be quite interesting. Most likely, you’ve at least become an aunt.

Speaking of my sister, did she start in a Ph.D. program yet, perhaps even having earned her Ph.D. already? Does she have a nice historical archiving job? Is she married to her boyfriend yet?

I hope you too are more active than I am. Maybe you have a volunteer job. Have you started on that biography writing course I so want to start yet? Maybe you’ve finished writing your autobiography! If so, is it still titled Some Former Preemies Will Later Go to University?

Maybe you’ve found yourself on an entirely different path than I can imagine right now. With my hypochondriac tendencies, I still wonder whether you’re even alive. But if you are, I hope you’ll find this – supposing WordPress still exists -, and respond.

Yours,

Astrid

mumturnedmom

Cars

This week’s spin cycle prompt from Lemon Drop Pie, in honor of NaBloPoMo, is “free choice”. What Ginny Marie means by this is to write what comes to mind. I have been feeling particularly uninspired this month, which is why I’ve written less than I do in most months rather than more. It’s not that nothing’s been on my mind, but it’s been tough to put it into words that others find interesting to read. Then again, I write more for myself than for my readers, unlike some heavy weights in the blogosphere. Then again, they seem to write for their sponsors even more than for their readers. Oh well.

A few months ago, I came across a prompt from I think it is The SITS Girls, which was to write about your first car. Now I don’t drive, but my husband does. I find this prompt particularly relevant now, as our current car broke down on the highway on Saturday. It sudddenly became unmanageable while my husband was driving 110 km/hour and not in the right lane. Thankfully, he was able to maneuver the car onto the shoulder before it crashed completely. Neither of us was injured and the car was taken good care of by roadside assistance. He now drives a car on loan and we’re having to get this car repaired. This is the third time the not-so-lovely secondhand Kia Rio has broken down in the four months that my husband owns it.

It shouldn’t come as a surprise that we long for our lovely Suzuki Baleno, also bought secondhand in August of 2012, three months after my husband got his license. We sometimes nicknamed the car “Balympia”, after my sister-in-law’s horse, whose name is Olympia, but usually we just called it Baleno.

The car was fine for a sixteen-year-old car when we bought it and didn’t have its first problem until its annual check the following year. We had this issue fixed and the car was fine for almost another year, when the head gasket broke down. The head gasket, my husband explained, is a piece of cardboard that sits between the engine block and the cylinder head of a car. It is cheap, but in order to replace it, the entire engine needs to be taken apart. Cost is approximately E700. Given that we bought the car at E995, we considered the car ecnonmically totaled in May of this year.

After the Baleno, we got a 1995 Kia Sephia. I don’t remember what caused us to throw out this car. Since it was a cheap car, we didn’t want to invest a lot of money into it, so we brought it to be interchanged at its first major problem. My husband reasoned that maybe a more expensive but also newer car would be a reasonable choice. This is how we ended up with the 2002 Kia Rio.

Kia Rio is a much more popular brand than Kia Sephia or Suzuki Baleno, which may be why my husband isn’t as attached to it as he was especially to the Baleno. We however fall into a familiar thinking trap, which is that, the more expensive something was when you first bought it, the more likely you are to want to keep it and invest in it. This is why we’re still keeping this car despite three major repairs in four months.

Teaching Your Child Organizational Skills

Organizational skills are very important in learning for children and adults of all ages. When they are lacking, a person struggles in unstructured tasks or in completing work independently and efficiently. Usually, a child develops better organizational skills as they age, being able to meet age-appropriate expectations. Still, children with even the best of organizational skills may struggle with major transitions, such as the transition from elementary to secondary school.

Other children have difficulties in organizational skills. Some can learn to overcome these as they mature, while others lag further and further behind. I am an example of the latter. In elementary school, I aced most classes, compensating for my lack of organizational skills by my high intelligence. In secondary school, I still did well because I had learned to read faster. I could therefore read the material being tested once at the last moment and still get a decent grade. Academically, my organizational skills didn’t get the better part of me till I was in college, when one reason I dropped out was my inability to plan my work.

Organizational skills are part of executive functioning. If a child struggles with organizational skills despite adequate parenting and teaching intervetnions, it might be that they have a learning disability or attention deficit disorder, but some kids have executive functioning difficulties without a learning disability or ADD/ADHD.

Here are some tips for encouraging the non-disabled child to develop their organizational skills. Some of these strategies will work to an extent with children with executive functioning difficulties too. At the end of this post, I will give some tips for dealing with kids with executive functioning difficulties specifically.

1. Use checklists. Help your child develop a to-do list. That way, the child will be able to visualize what they stll need to do and what they’ve already done. Have your child carry a notebook with them for writing down assignmnets and household chores. Have the child check off items that have been completed. You may need to monitor that they don’t check off unfinished tasks. You can have your child use step-by-step checklists for cleaning their room, too.

2. Use calendars and schedules. On a calendar, you will put all family members’ important appointments. It depends on you and your child how detailed a calendar needs to be or can be. On a weekly schedule, you list each family member’s household chores.

3. Buy your child a planner. Have them choose one that suits them or buy one for them that appeals to them. The child can put activities into their planner, but you’ll need to help them get their planner in sync with the family calendar to avoid conflict.

4. Involve your child in cleaning and cooking activities. Particurly cooking is a fun way to learn organizational skills. A child will need to learn to read a recipe, check steps they have already completed, assemble the right tools and ingredients, etc. Involve your child in meal planning too, challenging them to help you write a shopping list. Cleaning, while not as fun, is a necessary task that also requires organization.

As I said, many of these strategies will work for a child with executive functioning difficulties too. They may need more support while learning to organize their day. Here are some tips for helping a child with EFD to learn to become the best organizer they can be:


  1. Use written and/or visual step-by-step guides for chores and assignments. Incorporate as much detail as the child needs – I needed every step almost literally spelled out.

  2. Have specific tasks on a specific day of the week. Don’t have too many tasks in one day. For example, Monday is for cleaning the child’s room, while Thursday is for organizing their backpack. That way, the child will get into the habit of performing these tasks.

  3. Discuss new or unexpected situations with your child and help them prepare for what might happen.

  4. Repeat, repeat, repeat. Often, children with EFD have trouble learning to automate a skill, so you may need to help them, instruct them and supervise them for a longer time than you would a non-disabled child. Use the same schedules, reminders etc. for the same tasks over and over again.


It is very important to realize that your child with EFD is not being lazy, but they have a disability that makes it harder for them to organie their work. You may need to provide more support for them to complete their chores or homework than you would a similar-age non-disabled child.

Mommy Needs a Timeout Thursday Link-up

Age Is But a Number?

Age is but a number, we so often hear. There are many, usually older people who say they never grew beyond age twenty-nine (or whatever age they like the most). Some people even say they remain children at heart.

I can relate to this, and yet I can’t. I can relate in the sense that I strongly embrace my inner children and teens and the fewer and fewer selves who are older than me. Right now, only my crafty self identifies as older than my chronological age.

Yet I am also very much aware that certain developmental expectations are tied to certain ages. I was made aware before I was nine-years-old that, by age eighteen, I’d be leaving the house. My father jokes that the family cat should earn his high school diploma if he ever turns nineteen. The cat is only thirteen, but you get the idea. Even cats need to conform to developmental milestones, so people certainly.

Of course, in the privacy of my own room or even with my husband present, I can be childish all I want. I for example bought a Barbie doll when one of my inner children was particularly active. Nothing’s wrong with that. On the other hand, the only reason I can go on forums that are commonly visited by teens, is that I’m female. Had I been male, I would’ve been seen as a pedophile. (For clarity’s sake: I don’t go on forums that have a clear age limit or ever lie about my age, and I have absolutely no intention of exploiting anyone.)

My age is not only significant in highlighting the inappropriateness of my embracing childlike roles, but also in making clear that I’m missing out on adult milestones. I never spent much time in college, let alone graduating it, though I’m hardly technically a yooung adult anymore. I never held a job, even a summer job. I am not pregnant, let alone a mother. I hardly ever lived independently, which even on sites for people with autism is seen as a rite of passage into adulthood.

I have written about many of these issues before. I grieve the loss of my child identity (and an inner child is no excuse). I also grieve having missed out on adult milestones and likely missing out on even more as time goes by. Age is but a number, but you can’t just act whatever age you feel, at least not in public. That’s with good reason, of course, but it is still somewhat hard to deal with sometimes.

mumturnedmom

Creativity #WotW

Sorry for not having written much over the past week. I’ve been really tired and also worrying about the future of my care. I for some reason haven’t been able to put these thoughts into words.

Summing up this week in one word though, I will go with something positive, which is the creative juices I’ve had flowing lately. So, “creativity” will be my word for the week.

Last week Friday (yeah, I’m cheating a bit, LOL), I made some nice earrings. No picture yet, but I do have a pic of a necklace I made earlier that week. It is only a very basic necklace with blue beads and a blue/silver pendant. I like it though, and got many positive reactions to it.

Blue Necklace with Flower Pendant

I started looking for new crafty Facebook groups to join on Monday. Usually, I find a Facebook group first and then I start a hobby, rather than the other way around. I learned about bead weaving that way. I bought some seed beads, a few beading needles, cord and wire and figured I would be able to do bead weaving that way. I wasn’t. I have both a regular weaving loom and a wooden bead loom. Unfortunately, I couldn’t find instructions that I could follow without help, but on Wednesday, I got my activity staff to look at a tutorial I found – thankfully, we have a compute rin the activity room now. I then found out that a metal bead loom, which they used in the tutorial, is better than a wooden one. I’d unsuccessfully tried weaving with the wooden one before and the staff had not been able to figure it out for me either. I decided to buy the metal bead loom since it was only E11,95. I’m now waiting on it to come through the mail.

On Thursday, my art therapist also taught me loom knitting. I’d done this once before but had forgotten how to do it. She’d only done it once before herself, but together, we figured it out. I do think I’m going to bring my Rainbow Loom needle next week, because the regular crochet needles we used this time are either too big or the thread falls off the hook.

I’ve also tried to pick up regular weaving again, but am not too inspired in that area. I heard from the admin of a Dutch weaving group on Facebook that there is a weaving group for people with disabilities in my area, but I’ve yet to hear back from the person in charge of this.

Lastly, many blogging topics have floated around in my head. Unfortunately, none became formed enough to draft a blog post out of it, except for the Halloween/St. Martin’s post I wrote on Wednesday. I hope to be able to write more next week.

The Reading Residence
Post Comment Love

Halloween or St. Martin: My Experience (Includes Social Story)

This week’s spin cycle prompt is to write about your Halloween. Since we don’t celebrate Halloween much here in the Netherlands, and I certainly didn’t do anything for it this year, I have a hard time telling you about my Halloween specifically. We do have a similar celebration though, St. Martin, which is celebrated on NOvember 11. On St. Martin, kids go from door to door as on Halloween, only they carry a lantern and aren’t dressed up. They sing a St. Martin’s song and then get a treat.

I did follow a lot of Halloween-related posts over the past few weeks, and one was a Halloween-based social story (unfortunately, I forgot where I found it). For those not familiar with them, social stories are like little tales you tell kids with social-cognitive difficulties such as autism so that they know what to expect and how to behave in certain situations. They often include both written “instructions” and pictures. Reading this social story reminded me of my own most embarrassing St. Martin’s experience, when I could most definitely have used a social story.

I was about thirteen, which I think is way old for trick-or-treating, but my classmates were still going too and so was my younger sister. None of my classmates lived in my neihgborhood and my sister didn’t want me to go with her and her friends. I went alone, which was hard enough given that I’m blind and couldn’t always find the doorbell. However, the embarrassing thing was that, though I did start going from door to door at the same time my sister did, being alone, I had no clue when to return home. So at one point I had been trick-or-treating for I don’t know how long and I rang the umpteenth doorbell, and someone told me that I was way late and should be home by now. That sure was embarrassing!

Most Halloween-based social stories are catered towards younger children who can’t go from door to door independently, so they include stuff like “I will hold Mommy’s hand”. I realize however that for special needs kids especially, it may still be good to participate in Halloween or similar festivities when they’re older. Here is a St. Martin’s social story for those old enough to walk the neighborhood independently. You can modify the traditions and date to make it Halloween-based.

It is November 11, which is St. Martin. On St. Martin, kids go from door to door singing a song in exchange for candy. After dinner at 6:45, I get my lantern and get ready to go from door to door. I go outside at 7:00 and make sure to take my lantern and a bag for the candy I’ll get. I ring the neighbors’ doorbells. When they open the door, I show my lantern and sing one of the St. Martin’s songs I’ve been taught. Then the neighbors give me candy. I go to the neighbors in my own street only and finish off no later than 7:30. I am home no later than 7:45. I get to choose and eat one piece of candy tonight. St. Martin sure is a treat-filled celebration!

Celebrating Myself #PreemieBlessings14

November, in the United Stats, is prematurity awareness month. In honor of preemies and prematurity awarness month, Michelle over at Preemie Blessings has started a challenge. Her first challenge is to answer on one of your social media networks who you are celebrating during prematurity awareness month. Now most preemie bloggers are parents so will mention their children. I’m not a parent, but a preemie myself, and I am just going to be bold and celebrate my very own self!

November is a tough month for me usually. It means adjusting to the end of daylight saving time, the start of colder weather and, well, fall and winter blues. November 2 also marks the anniversary of my first suicide note in 2001 and my suicidal crisis in 2007 which led to my psychiatric institutionalization. I know what it is like to feel like I no longer want to live, but I also know what it is like to feel like a surviovr, and to celebrate it!

I was born at somewhere between 25 and 26 weeks gestation in June of 1986. During my three months in neonatal care, I endured various complications. From one of them, retinopathy of prematurity, I’ve been legally blind all my life and am now totally blind. The others are a mystery in some ways. I had a possible brain bleed, but it wasn’t suspected until hydrocephalus was diagnosed in November. You know, they didn’t do CT-scans or MRIs routinely back then. I also had a lung infection when I was still in the NICU and RSV when I’d been home a few months, but not sure whether I had the A’s and B’s (apnea and bradycardia) that so many preemie parents worry about.

I once read this inaugural speech by a professor of neonatology or something, who said that lung problems, retinopathy of prematurity and brain bleeds are the three conditions that predict poor outcome in preemies. I don’t know whether this professor drew the connection, but I did draw one between poor outcome and “quality of life” and further worried that babies with all three conditions, like myself, should not be allowed to survive.

I still struggle with the thought that I shouldn’t have survived and with suicidal ideation at times. Life is tough sometimes, especially now that I’m worrying about the upcoming cuts to care that will take effect in 2015. I worry that I’ll be left to my own resources, like I was in 2007, and that I will fall into a crisis again. This worry has almost led to a mini-crisis already.

But let’s move on to the positive. I celebrate myself and my life, after all. Here are some things that make my life worth living.


  • Being married to my wonderful husband.

  • The support from people on social networking sites.

  • Being able to read Preemie Blessings and so many other lovely blogs.

  • The Internet in general.

  • Being able to express myself in writing.

  • My creativity and the help I get at day activities to express it.

  • My faith.


Today, I can say I’m glad to be alive. I say this with a bit of a knot in my throat, but I say it nonetheless.

Childhood Fears

Growing up, I was a bit of an anxious child, but in some ways, not like other children. I wasn’t afraid of monsters under my bed. Rather, I caught every single sort of bad news and imagined it happening to me.

At the time, early to mid-1990s, the Leprosy Foundation apparently had enough money for large television funraising campaigns. I hardly hear or see them now, so maybe people are more interested in a disease that affects people in the Western world, like ALS. In any case, leprosy was “hot” then. It’s this big, bad disease that magically causes your fingers and toes to fall off. That’s scary to an eight-year-old!

With my fear came rituals to counter the fear. I have never been diagnosed with OCD, but it might be that I had a mild case of it when I was young. So to counter my fear of catching leprosy, I’d sit up at night for hours counting my fingers and toes. Later, when I heard that leprosy causes loss of sensation first, I would make sure I was very aware of the sensation in my extremities.

The fear of catching leprosy got less when I was around ten or eleven, when my father convinced me no-one in the Netherlands gets it. Just then, I met a girl who said she’d had it and a classmate who had a mysterious disease with what I thought were similar symptoms. I had by this time heard that the bacterium that causes leprosy takes two to eight years to become active, so I wasn’t too worried of acutely losing my fingers or toes. But the fear remained at the back of my mind.

Other fears and compulsions took over by my teens. I remember I had this bad fear of getting CO poisoning, so I’d make sure my heating was off and my window was open even in the midst of winter. Maybe now I need some of that fear back as people complain I don’t air my room frequently enough.

Some form of fear and compulsion stayed with me for many years. Some are too embarrassing to discuss here, while others are more ordinary – like the fear of someone breaking into my apartment at night. The fears, however, almost completely disappeared when I was admitted to the psychiatric hospital. I still experience some health anxiety, but it is manageable, and the compulsions have completely disappeared.

Mama’s Losin’ It

Masks and Alter Personalities

This week, Ginny Marie’s spin cycle prompt is “masks”. I saw this topic being announced a few weeks ago already, and immediately knew I wanted to participate. Now that I’m sitting in front of the computer, a thousand thoughts spin through my mind.

Throughout my life, masks have played an important role. Not literal masks, but the figurative masks people put on, or are made to put on, to appear like something they are not. In all honesty, I’ve worn and been made to wear so many masks that I don’t know whether at a given moment I was being sincerely me or was wearing a mask.

I have many alter personalities. They’ve come to play less of an important role now that I no longer carry the diagnosis of dissociative identity disorder, as I did from 2010 until 2013, but they’re still there. These alter personalities represent aspects of my life I feel forced to disown, either by some internal or external force. Two of them have always played the most important role.

The first one is Jane. She is a strong, independent young woman. She doesn’t need much help from others. She is intelliigent and she knows it. Her only negative characteristic is that she’s a bit distant and she would rather live alone than for example with my husband. Maybe it’s because she was formed when the least of my priorities was finding friends, let alone a partner. Independence was much more important. I mostly acted like her when in high school, doing overall well. If anything, I asked for help too little.

The other is Carol. She is a young woman too, but pretty severely disabled. She has trouble with self-care, engages in self-injurious behavior, has meltdown after meltdown. She can speak, but barely communicatively so.

There are others, too. Teens, like Elena, the cheerful one, or Brenda, the angry teenager. There are young ones too, like Milou, the curious eight-year-old, and Suzanne, the seven-year-old with too many responsibilities. Some represent hopes for my future, like Esther, who is a mother. Carol and Jane, however, are the most important in shaping my current self-image.

Many people, in today’s rehabilitation-based society, expect me to disown Carol and embrace Jane. She may be a bit schizoid, but she is intelligent and independent and that’s what matters. Many people not involved in my care see her as the authentic me, not realizing she is as much a mask as Carol is, and as much a mask as all the others are.

The thing is, all these parts or masks or alters make up me. I have learned over the years to stop having to put an alter’s name to my every action. That is improvement, but it doesn’t mean the alters weren’t there when I still dissociated significantly, and it doesn’t mean they’re not there now. When I go into a welcoming Mommy community, I’m still Esther. When I craft, I’m Annemiek. When I play with Barbie dolls, I’m Little. Yet I don’t show it openly or even covertly all the time.

I still have a very unstable sense of self. That may be why I wear all these diagnostic labels that I talked about in previous posts – they help me understand myself. So do all the alter parts. I may not be putting them on like a mask to the outside world anymore, which means I’m no logner diagnosable with a dissociative disorder, but I do still inwardly experience them.