It has been quite a while since I have posted here and that is my fault. I have been working on a schedule for my posts… yet forgetting to actually post something. Laughs at myself.
Well, one week ago today was the first anniversary of my blog, and I want to talk about how I have grown, review my posts over the past year and talk about what is next for my blog.
One year ago, March 26, 2018 I had been thinking about starting a blog for some time… about my gift, my disability, Williams Syndrome I had done some serious research about all of the different hlog sites… Tumblr, Blogger, etc., Read a bunch of stuff on blogging, and looked for ideas on how and where to begin… I had no idea what I was about to do.
I finally settled on WordPress, why?
The reason why I settled nicely into WordPress is because of the super user-friendly format and all of the customization options that were available and the pricing is super reasonable… compared to other sites and whar they had to offer.
So I created my account and started out on my blogging journey then after I have everything ready to go. Then I set it aside because I was taking care of my aunt who had just had double knee replacement surgery. Then a little over a month later I sat down and hopped on to WordPress, now it is time to begin.
What do I write about?
Sitting there staring at the blinking cursor my mind starts to race what do I write about? I freezethen it hits me just talking about the blog and about you.
So I started writing my Welcome post just offering some general education on what Williams Syndrome is, a little about me and a little about the blog.
I originally thought that maybe post once a week, but then I thought no one is going to read this but I fought the negative thoughts down and said to myself just post whenever you want about what you want todon’t worry what people thinkthis is your blog so have fun with it.
I have been trying to write things that get people talking or at least write a comment to my posts.
So then I got busy living life and then come a couple days after Thanksgiving, I decided to write My Thoughts just a rambling off of my thoughts and pictures.
Today is my 29th birthday and I have been feeling really sentimental and a little emotional the last couple of days and I can’t really explain why… it has been a little frustrating. I usually get sentimental around my birthday especially the last couple of years. I guess that I don’t really have an explanation except that I am getting older.
Today in 1990 my mother was 29 when I was born so I have known my mother for half of her life, as I am the same age that she was when she gave birth to me. The last couple of years my mother and I have grown closer to each other and that is something that I truly treasure. I have also grown closer with my father, my little sister (22 years old) and my brother (25 years old) over the last couple of years as well.
I don’t want to keep rambling and bore you but I shall post again really soon.
I have been thinking about doing some new monthly/weekly blog posts and below I will tell you what they are and a little bit about what I will talk about in the posts. Feel free to weigh in and share your thoughts and opinions about your favorites and not so favorites. So let’s get started…
(insert month or this week) I’m Obsessed With…
For those of you who watch Meet the Press with Chuck Todd, I am taking a twist on a segment of his show called I’m Obsessed With I have not decided yet how often I will do this if it will be a weekly, bi-weekly, or a monthly post yet. So I will decide that and see the reaction after I start it next month.
What Made You Happy/Grateful This Month
I have yet to decide how exactly I am going to execute this, feel-good post so we shall see if this one comes to fruition.
(insert month)- Quotes That Inspired Me This Month
I think that this one will be fun to do and through this will help inspire others as well.
Monthly Music Playlist
What music am I listening to this month and why I chose that specific song and my interpretation of it.
This one will be fun and random… might wind up being a little on the long side from time to time but that is okay because you can understand how I think. This one will be most likely be a weekly post.
By The Numbers
Fun Facts, About me, some fun numbers thing, haven’t decided whether this will be a weekly or a monthly post…
This could go any direction and could be fun to do.
Happy New Year 2019, reader, For my first blog of the year I thought about giving you a little bit of info about how my blog essentially came to be, and some tips to help you with yours. I am not quite sure how this will work itself out. So, let’s just wing it for now and see what happens.
I am going to start by giving you a layout of what I will be talking about here.
What is a blog?
Why do people blog?
Why do I blog?
What topics do people blog about?
How to start a blog
What features are important for blog hosting?
What Is A Blog?
Blogs are in many ways, the Swiss Army knives of the internet.
Beginning in the ’90s as online diaries, have now grown into a massive, endlessly varied form of communication.
Blogs can be short story collections, recipe hubs, role-playing games, records of UFO sightings, or a source for information. They can help businesses advertise, educate customers, inform shareholders, or inspire community interactions.
Chances are if you can imagine it, there is a blog about it somewhere. Probably hundreds of them!
Blogs are one of the last level playing fields on the web. What’s stopping you?
How Is It Different From Blogging?
Blogging is simply the act of starting and writing a blog!
Blogs are so ubiquitous because anyone who’s able to type can become a blogger.
You don’t need to know how to type fast; you don’t need to be able to see or hear. You are never too young or old to blog. You don’t need to know anything about computers or the internet!
Irish Queen- on rule of blogging
Why Do People Blog?
People blog for many reasons. Blogging has been proven to make you a better writer, make you money on the side, or give you a platform for sharing your ideas.
Some of the most common reasons people start a blog include:
As a way to network with people sharing a common interest.
To market or advertise a business.
To make a difference by sharing political and social issues.
As a resume for highlighting expertise.
As a way to express creative ideas.
To share knowledge with others that want to learn.
To make money as a side hustle– or even as a career.
Why Do I Blog?
I use my blog as an outlet to educate others on my disability and share the way my mind works and how I think and just a place that I can escape to where I have some semblance of control.
What Topics Do People Blog About?
Sometimes figuring out what to blog about is the hardest part. Luckily, I have some ideas to help get you started.
Fashion– makeup, clothing, hair, and beauty products.
Travel– vacations, best places to visit, your own travels, restaurants, and entertainment.
Technology– software, programming, web development, web design, and startups.
Business– industry updates, real estate, expert tips, and best tips
Content Marketing– how to market your business, SEO best practices, and email campaign.
Food– recipe sharing, restaurants, and kitchen equipment.
Finance– industry happenings, ways to make and save money, budgeting.
Health and Fitness– sports equipment, nutrition, exercise, dieting, and fashion.
Lifestyle– gardening, home improvement, organization, travel, survival.
Personal Development– Time management, health awareness, mindfulness.
Parenting– child development, product review, tips for age stages.
Professional & Academic– colleagues and peers discuss their fields of expertise, like CPAs.
Web hosting is the service that puts your blog on the internet. That means good web hosting can make or break your blog.
You need to think about four things when it comes to web hosting:
Cost– What does it cost per month?
Speed– Your blog needs to load fast. Speed is important as users move to mobile.
Uptime– Every website goes offline sometimes. But a good web host will help minimize problems with downtime.
Technical Support– Boring. but super-important!
What Type of Web Hosting Do I Need?
Shared hosting is the cheapest and the most basic form of hosting available. You store your website on a server shared with other customers of the hosting company. You also share the resources– such as bandwidth and disk space– of the server as well.
You’ll also notice that some hosting companies have WordPress hosting, These plans typically run on shared servers but can also be offered as cloud and VPS-based hosting, WordPress hosting is optimized for running the platform and will give you the most seamless WordPress experience. (There are many other types of hosting– like cloud, VPS, or dedicated– but you can ignore them starting out).
But if you are looking for the cheapest hosting possible, go with a basic shared hosting plan. Just make sure you can get a one-click WordPress install to make your life easier.
What Features Are Important for Blog Hosting?
Here are some of the most important features to look for when you are choosing which hosting provider to go with:
Disk Space and Bandwidth depending on the amount of traffic your website gets.
Security Features like malware scanning, daily backups, and 24/7 site monitoring.
Uptime guarantees against server crashes and maintenance issues.
Speed and Performance so you know your site is always giving the best user experience.
Support types such as email, support ticket, and live chat.
Affordability– quality web hosting doesn’t come for free.
Why Technical Support Matters Most
The final point– technical support– is boring, but it’s also really, really important. When its 1am and you don’t know why your blog is offline, you need somebody you can speak to! Specifically, you need somebody you can call by phone– not send an email and wait a week for a reply.
How To Start a 100% Free Blog
In my opinion, WordPress.com is the only show in town (I have tried others, in the past) for a free blog. Sure there are plenty of other services, like Google’s Blogger.com or Yahoo’s Tumblr. But they’re severely limited next to WordPress for a free blog service.
You’re not going to get the fancy features of full-blown WordPress, but it beats the alternatives hands down.
Step 2- Choose a Domain Name
Your domain name is your blog’s identity on the web. This is the URL that people type into their web browser when they want to visit your blog.
Before you register your domain name, here are some guidelines to follow. Your domain name should:
Be easy to spell (aka “pass the radio test”)
Be descriptive (describe your blog’s topic or establish a brand name)
Be short and sweet, if possible
For example, if you are a passionate collector of vintage guitars, “VintageGuitars.com” would it be better then “MyMostFavoriteGuitars.info” it fills all of the criteria I mentioned. However, VintageGuitars.com it is likely to be a very expensive domain indeed. (More on that in a moment.)
Keywords are words or phrases that describe your niche. Think about the that people might use to search for your content, and bear them in mind when choosing a domain name to register.
Finally remember, you can’t use spaces or punctuation (except hyphens) in a domain name.
How To Choose A Great Domain Name
To get a better idea of what makes up a good domain name, I’ve come up with some examples:
For a blog on caring for pet budgies, “friendly-birds.com” is a bad domain name:
This domain uses a hyphen. Many users forget hyphens when typing domain name.
The name doesn’t explain that the blog is about budgies!
A domain name for a Spanish language learning blog of IteachPeopleLanguages.com may be specific, but it’s long, wordy, and easy to misspell. Whereas DynamoSpanish.com is shorter and more descriptive.
Instead, “healthybudgie.com” could be a much better choice. The domain name is specified, contains keywords, is short, memorable, and easy to spell.
Step 3- Choose A Blogging Platform
To start your blog, you need a blogging platform for your site. While there are many platforms to choose from, we think there’s only one serious choice.
It’s called WordPress.
WordPress: The World’s Most Popular Blog Platform
WordPress is the world’s most popular blogging and and CMS(content management system). It powers 27%+ of all websites online today, and an even larger percentage of blogs.
WodPress is used by everyone from digital natives to tech-illiterate seniors.
Blogging is to writing what extreme sports are to athletics: more free-form, more accident-prone, less formal, more alive. It is, in many ways, writing out loud
10 Reasons Why I Love WordPress
WordPress lets you customize your layout, create content, and expand your blog’s functionality over time.
We love WordPress for lots of reasons, including:
It’s 100% free
It’s super-easy to install
There are lots of awesome WordPress themes & plugins available(and most are free)
There is tons of free help online
WordPress is simple enough for beginners but powerful enough for experts
It has infinite customizability with plug-ins and themes
It’s mobile Friendly
It’s great for SEO
WordPress is constantly being updated. As long as you update promptly and be careful with themes and plug-ins, you shouldn’t run into many issues
WordPress boasts a huge free, online support community
WordPress.com Vs WordPress.org: What’s the Difference?
There are two WordPress platforms to choose from:WordPress.comandWordPress.org. Here are the key differences:-
If you can’t find the email, check your spam folder. The WordPress login page looks like this:
How To Use WordPress Dashboard
After login, you’ll see the WordPress dashboard, the control panel for your blog. This let’s you handle everything from the design to publishing blog posts.
n a few short moments, you’ll be ready to create your first blog posts or pages, like your contact page or other “must have” pages.
How To Set Up WordPress
Good news: WordPress works great right out of the box – even if you do nothing else!
But there are three simple housekeeping tasks you ought to take care of before you publish your first post:
a) Check Your Blog’s Name You chose this when you installed WordPress – now’s your chance to make any changes. In Settings > General, customize your:
Site Title(eg, Living With Williams Syndrome)
Tagline(a strapline displayed below the logo in many WordPress themes)
b) Double Check Your Email Address Check that your email address is correct, for when you need to reset your password in future. If there’s a typo, you’ll be locked out of your blog!
How To Choose A WordPress Theme
Don’t focus on having a great blog. Focus on producing a blog that’s great for your readers.
WordPress has countless free themes to choose from to get your blog live ASAP.
Your choice of WordPress theme allows you to get creative, and make your blog look and feel just like home.
The good news is WordPress makes it super-easy to chop and change your WordPress theme. You can change it every day of the year if you want to!
So: should you use a free theme or pay for a premium WordPress theme?
New Blogger? Use A Free WordPress Theme
For new bloggers, free themes offer total freedom to experiment. If you’re not used to using WordPress, we recommend using a free theme until you know which features matter to you most. WordPress has its own repository of free themes.
You can install them right from your dashboard; just click on “Appearance” and then “Themes.”
Some of the most popular free WordPress Themes include…
…and usually, arrive by default when you install WordPress. You’ll probably recognize them all because these blog themes are so widely used.
For example, Twenty Seventeen looks like this:
Free WordPress Themes: The Pro’s & Con’s
Freedom To Be Fickle. You can switch between free themes as frequently as you like, without having to pay.
Experiment. Try out lots of different color schemes and layouts
100% Free with all the basic functionality you need to start blogging
Generic. You may find that thousands of other blogs use the same WordPress theme as you
Less Professional. The sad truth is it’s harder to make your blog look professional with a free theme
Less Customizable. Free themes usually offer less sophisticated customization. This will be more important as your blog builds an audience and gains traction.
Experienced Blogger? Upgrade To Premium Themes
Premium themes often offer a more stylishlook out of the box. Our favorite sites to buy premium WordPress themes include:
Expect to pay from $29 to $99 for a typical premium theme..
Some super-deluxe options will cost $150+ if you buy a developer license, but you only need that if you plan to use the theme across many blogs.
How to Install A New WordPress Theme
WordPress makes it simple to alter the theme of your website:-
From your WordPress dashboard, go to Appearance > Themes > Add New
Now you’ll see all of WordPress’s featured themes. You can choose one of these or search for the names of themes you’ve heard about.
To narrow your search, use the Feature Filter to select the layout, your desired features, and your blog subject.
Once you find a theme you like, you can preview it with your content. If you don’t have any website content or the plugins necessary for the theme, this preview might not look like anything like the final product.
Once you’ve picked a winning theme, just click Install and Activate, and you’re done!
All of your blog content will appear in the new theme, and you shouldn’t need to do anything else to get the new theme up and running.
Step #5 – Publish Great Blog Content
Even personal bloggers should have a good idea of what they want to write about before they dive in. Don’t fret! Content planning isn’t rocket science. We’ll walk you through it every Step of the way.
Who Is Your Blog’s Target Audience?
You need to be clear about what you want to say, and it helps to imagine who your audience will be. Pick a topic that you are truly passionate about, and think about the needs of your blog’s readers.
One quick and easy way to figure out your target audience is to imagine that you’re writing letters to a particular type of person.
Ask yourself questions like these:
Are you talking to men or women?
Children or adults?
Where do they live?
What activities do your audience members participate in?
What type of work and hobbies do they do?
What does a typical day in their lives look like?
Example: Say I’m creating a blog for “pet parents.”
They can be of any gender or age.
They love to do things with their pets, like walking dogs or playing with cats.
They can live anywhere in the world.
Significant chunks of their daily lives involve interacting with their pets (walking, feeding, playing, snuggling).
They consider their pets to be part of the family, more so than those who merely call themselves “pet owners.”
Choose a Niche For Your Blog
Niches are pretty important for your blog.
Some big websites, magazines, and newspapers can target huge audiences because they have massive amounts of content and a stable full of writers to create it. Huffington Post, Sports Illustrated, and the Wall Street Journal fall into this category.
However, you’re not going to get far competing with those heavyweights, so you need to drill down into your target audience and focus on a subset of your audience. By narrowing your focus to a niche, you stand a chance of building the best blog on that topic.
Possible niches for our example audience include:
Dog park reviews
Pet hotels or pet travel guides
Handmade pet toys
I’m going to go with “handmade pet toys.”
We can write about where to find them, how to make them, toy safety, toys based on your pet’s personality, etc. I can also tell stories about my own pets, start an Instagram or Twitter to feature pet photos, and review toys. Once you choose a niche, it should be a bit easier to come up with a good name for your blog.
Let’s call my new blog, Fuzzy Family Fun
Step #6 – How to Write A Blog Post
High-quality content is critical to gaining traffic for your new blog. But if your content is merely average, you may not attract much traffic – or even none at all! There are a million blogs on the internet. You need to make yours stand out from the competition.
We’re going to show you exactly which buttons to push to get your first blog post online in a flash. Here is a preview of the process, which we’ll explain in-depth below:
Create a new blog post
Write your blog post
Add categories & tags
1. Create A New Blog Post
In the WordPress dashboard, you’ll see a sidebar with menu items that will take you to various parts of your website. To start a new blog post, click Posts > Add New.
This will take you to the WordPress editor screen, which is where you will do your writing.
2. Draft Your Blog Post
In the WordPress editor, your first task is write a headline for your post in the title section.
How Long Should a Blog Post Be?
The length of content on the internet is a hotly debated topic. Word-count is a key contributor to your search ranking results. Longer content typically ranks higher on Google. In fact, the longer the better when it comes to search ranking. This is because longer articles will contain more keywords, more topics, headings, links, and pictures.
At the very least, your blog posts should be more than 300 words for Google to rank it. The ideal length of a post for general reading is 1,000+ words.
And that’s just fine too. Just make sure that your long posts are extremely easy to read and to skim. Avoid walls of text at all costs!
If you’re aiming for a solid number, then between 1000 and 1500 word posts should be a perfect starting point. But feel free to experiment and find what works best for you and your audience.
3. Add an Image
If you want to add an image, click on the Add Media button. This will bring you to the Media Library where any images you have downloaded onto your site are saved for use in blog posts.
After you click on Add Media, select the image you want to insert into your blog post.
Don’t forget to fill out things such as the title, alt text, and description so when your website is indexed by search engines, your site is ranked properly in search engine results and potential visitors find you.
You can also add a caption if you want a short description to appear on your blog explaining the image to readers.
Click Insert into post.
Your blog post will now look like this after adding an image:
4. Add Categories and Tags
Categories and tags help organize your blog so readers can find what they are looking for Look to the right-hand side of your editor and notice the two boxes, Categories, and Tags.
Categories describe the topics that can be found on your blog. For example, if you have a personal blog, you may choose categories such as Music, Travel, and Food.
Tags are more specific descriptions of your posts that help readers drill down to smaller topics. When you write a blog post, you first choose a category.
In this example, we’ll choose Food. Then, for your post’s tags, you might enter something like pizza, breadsticks, chocolate cake.
Simply click the category you would like to use for your blog post, input tags you want to assign and click on Add.
After you have created your blog post, you can preview how it will look when you publish it by clicking on the Preview button in the Publish box. This will open the public face of your blog, and show you what site visitors will see when they visit your website.
5. How To Publish Your Blog Post
If you are happy with your blog post, head back to the WordPress editor and locate the Publish section.
Here you can either click on the Publish button and post your blog immediately, or schedule to publish it at a later date. If you choose to publish it at a later date, simply choose the date and time and save your changes.
And there you have it! You’ve published your first blog post.
What Blog Topics Should You Cover?
Here are some ideas for coming up with blog topics to write about:-
Google Trends – Do a search on your niche, but also look at news headlines and see if there’s a place where they intersect your niche
Mind-mapping – Draw out branches from your main topics to see how many more ideas you can split off from them.
Social media – What’s happening on Twitter or Facebook that you could use to create new topics?
Example: My brainstorming helped me come up with these post ideas around handmade pet toys:
The history of dog toys in the White House
Knitting or felt patterns for toys
Pet toys around the world
Toys that might be harmful to your pet’s health
How To Find Your Blog’s Voice
Blogging is usually less formal than other media. It’s easiest to just be yourself!
But one way to “niche” yourself is with a unique style of writing. You can probably think of lots of examples where humor, style, or oddness make a particular blog memorable.
Example: For my Fuzzy Family Fun blog, I’m just going to write like I talk, since I’m also a pet owner. Readers will connect better with my personal stories if they come from my authentic voice.
How To Write Awesome Blog Content
The currency of blogging is authenticity and trust.
There’s no magic formula to determine what your content should look like. It depends on your niche, and what your passion is. And it depends on what your readers are looking for.
Some blogs focus on breaking news or viral stories from the web. These blogs can gain a lot of traffic very soon after publication. The articles tend to have a short lifespan.
Other blogs contain in-depth articles that are written with longevity in mind (what we call “evergreen content”).
These articles tend to be longer, more detailed, and aim to attract traffic for many years – or even decades!
Look at other blogs in your niche and look at the things they do well. Try to find gaps in their strategy, and capitalize on those opportunities.
How To Create a Blog Schedule
Setting a schedule for your blog will help you build traffic – and keep it up over the medium and long-term.
Scheduling is important for two reasons:
Building Readership. You’ll encourage your readers to visit your blog regularly.
The Power Of Habit. You’ll get into the habit of regular writing – and stick with it. Just like going to the gym!
How Often Should I Publish Blog Posts?
There’s no right or wrong frequency for publishing new posts. It depends on…
Your blog’s topic (eg, breaking news vs history)
Your audience (eg, young vs old)
Your goals (eg, a hobby vs a job as a professional blogger)
One of the best blogs we know publishes a new post just once a month.
No matter how often you update your blog, it’s a good idea to space out your posts, instead of publishing lots of new blog posts all at the same time.
You don’t have to sit down and write every blog post just before you intend to publish. WordPress lets you schedule blog posts in advance.
This gives you the freedom to plan a complete blogging schedule, write the blog posts ahead of time, and then publish them at regular intervals.
That might be once a day, once a week or once a month – the choice is yours.
What Makes A Successful Blog?
There are many routes to blogging success. However, you can’t go wrong in implementing these suggestions.
Provide content that your audience values.
Make sure you understand SEO. (And keep up to date with it.)
Post on a consistent schedule.
Use social media to promote your blog.
Interact with your hardcore readers – they’re your best promoters!
Don’t be afraid to fail.
That last one is probably the most important one. Experiment to see what both you and your readers like. If something falls flat, don’t give up – just try something new.
What Do Your Favorite Bloggers Do?
It can help to take a look at your favorite blogs with a critical eye to figure out why they succeed. What do other blogs do that stops you coming back?
Are they sending out regular emails to their readers? Do they offer merchandise? Do they have ads? Is there a pop-up newsletter box every time you click? Do they update frequently? How do they interact with commenters? What are they doing on social media?
Beyond The Basics Of Blogging
Already mastered the basics of blogging? Here’s what to think about next.
How To Build Traffic to Your Blog
Once you’ve got your first blog posts live, the next step is to get visitors to read your blog. This isn’t as hard as you might think. Most bloggers rely on four key sources of traffic:
Not only are bloggers suckers for the remarkable, so are the people who read blogs.
Direct traffic, or people typing your domain name. You’ll not have any when you launch your blog!
How To Get Your Blog Ranking In Google
Search engines like Google add new blogs to their index when they discover them mentioned (in the form of links) on other websites. Effectively, the more links your blog has (from high-quality, popular sites), the higher Google rank you.
Want to know how to get your first link to your new blog? Read on below!
There are some basic SEO skills you can apply to any blog post you publish that will help improve your search engine rankings.
Have a Good Title. The closer your title relates to keywords people are searching for, the higher your content will rank.
Internal Linking. Internally link to other content on your blog to organize it better for web crawlers. In addition, aim to have other websites link back to your website (through guest posting, blog comments, or just by publishing quality content others want to mention on their own site) so Google and other search engines can reward you for being authoritative and rank your blog posts higher.
Keyword Research. Take the time to find out what keywords relate to your content so that when people search for them, your website appears as one of the most relevant results. Add keywords to the title of your blog post, in the content body, and in metadata such as image alt text.
Publish Consistently. Teach web crawlers to come back to your site on a regular basis and improve your rankings over time by publishing regular contentfor site visitors to enjoy. Ranking higher in search results will help, and becoming a source to rely on for consistent content helps as well
Email Newsletter For Bloggers
I recommend capturing your readers’ email addresses and sending regular newsletters helps keep them up to date. This builds loyalty and brings readers back for more.
Give your readers a way to share their favorite content with those they know and watch your blog’s traffic boom. In addition, provide links to your social media accounts so loyal readers can follow you and either interact with you on social media or again, share their favorite stuff with everyone else.
Two of the most popular social media platforms in use are Facebook and Twitter. You can add native videos to Facebook and cater to those that love to watch videos, you can Tweet instant updates on Twitter and invite followers to check out your new blog post. And most importantly, no matter which network you use, you can expand your reach to an audience base you never even knew about.
You’ll want a matching name to your domain name on Facebook and Twitter.
Social networks can drastically expand your blog’s audience. If you have a presence on Twitter, Facebook, or LinkedIn, you have a better chance of getting found, so you should be thinking about them as part of your blogging strategy.
I hope that everyone has had a fantastic holiday season. As I sit here and reflect on this year as it is quickly coming to a close. This year was filled with highs and lows. I learned a lot, and I will enter this year with a renewed sense of purpose, excitement, and drive. I will break this past year down month by month.
January– I turned a year older, and I was still interning at a really great company where I felt that I had a lot of potential of turning this into an employment opportunity, and I really was enjoying my time there.
February– I was still interning at a really great company, my aunt had double knee replacement surgery, so I offered to stay with her while she recovered and help her with her physical therapy, along with other duties. I honestly had a delightful time. I learned that I really love and enjoy helping and caring for others.
March– After interning at a really great company, for about 5 months, they delivered a “gut punch” that made me realize that unfortunately good things aren’t always meant to last.
I had a meeting with my job coach, my ETP supervisor (I will write about ETP later), my supervisor at the internship, and the person I was connected with from the HR dept. were in this meeting, I was informed that the possibility of my internship there possibly turning into a paid position was no longer in the cards. The company had given me the option to either end my internship that day or finish out the month. I decided that I would finish out the month because this meeting was a little past the halfway point through the month. Even though doing so was so difficult.
I was still assisting my aunt with her recovery at the time of this meeting, but I tried not to let this affect my care and attention to aiding my aunt in her recovery from her replacement surgery. My ETP supervisor had contacted my mother just to let her know what had happened and when I returned to my aunt’s house, my mom arrived a few short minutes later just as it hit me like a ton of bricks.
April– My internship ended, and I took a moment to breathe, pick myself up, then I started looking for a new job.
May– My boyfriend and I celebrated his birthday. I was still looking for a job. My family and I went to Charleston, SC to watch my younger sister graduate from college. I am so proud of her.
July– I went and watched the fireworks on the fourth of July. I was still looking for a job. My family, dad’s siblings and their families and I went on our annual camping trip for a three day weekend.
August– We celebrated my father’s birthday.
October– Had a good Halloween.
November– Celebrated my mother’s birthday. Had a wonderful Thanksgiving… too much good food.
December– Still looking for a job, and had a wonderful ChristmasO
Notes– One thing I learned is that looking for a job has been extremely frustrating and the waiting and not knowing has been the worst part of the job searching experience. I have reached the point where I want to rip my hair out due to the frustration (not that I actually want to rip my hair out).
Now is that time of year where you start to think about how you want to improve yourself in the coming new year… honestly I dread this because I know that I failed on my goals for this year and I wind up kicking myself in the butt EVERY single time.
But as I sit here, I am just honestly disappointed in myself at this past year. I am not here today to put my year in review… that will be next week’s topic.
Today I am looking to the future (trying) and setting myself up for success for the coming New Year. So let’s make those goals, and let’s get an early start I will also add in my thoughts on these goals as we roll along.
Lose 45 lbs– This is easier said than done because I love food and sometimes I really cannot control when I am hungry, but I honestly want to work on this.
Get a job– I have been looking for months, and I don’t know why but I feel like people are looking at my disability andnot at meas a person who has a lot that she can bring to the team if honestly given a chance to prove myself.
Learn to know– What I mean by this is sometimes my Irish-German temper gets the best of me and sometimes I need to remind myself when it is okay to say to myself that this disagreement is not worth it.
Be a better blogger– I have always wanted to blog, but I have a tendency to become trapped in my thoughts worried about what other people think about what I post then I woke up and realized that this is my blog and I will post what I want.
Get my permit/driver’s license– I want to drive, and my current permit expires on my 29th birthday which is on January 30, so I need to take the time to polish up on my driving know how.
Improve myself– I need to eat better, but I will have to blame my grandfather for inheriting his sweet tooth, I love sweets.
And last but not least…
Have a successful, amazing, and memorable 2019.– I hope that overall regardless of what happens next year I hope to have a year full of good times, laughter, experiences, and just enjoy the last year of my twenties.
As I sit here I am still in awe and disbelief that today we celebrate our 5 year anniversary, it has honestly been awe-inspiring, & I have never looked back once since we started on this beautifully crazy adventure together and I hope that we can continue to enjoy this wild ride together for much longer. Over these past 5 years you have become much more than just my rock, or my partner in crime, or my better half, you are such a blessing to every life you touch.
Sitting here thinking & reflecting on our time together I honestly cannot recall if I have ever smiled as much as I have or laughed louder than I have with you. I love your uncanny sense of timing. Whether it is with a joke when I am in need of a laugh (sometimes you just keep it going until I am gasping for air), a perfect bear hug when my world was falling apart, asking me if I needed anything, or just simply saying something sweet making me love you more than I thought I ever could. When I get hard on myself, you are always quick to remind me about all the positive things that you see in me.
I love it when we just sit there in the silence not really saying much of anything, just enjoying each others company. I love that you call me just wanting to hear my voice and/or text me every day when you get out of work letting me know that you are thinking of me, especially after a long day at work, and how we talk about our days and what happened during the day. I remember how we met and our story is a pretty simple thing.
Well, we met when you were my tour guide for CEP (College Experience Program- a program that gives those with disabilities the opportunity to attend college). Then we went our separate ways, but I never stopped thinking about you and the following year our paths crossed once again when I moved into my dorm. Then the during next two years we got to be really good friends. Then you helped me move into my apartment and then last year you helped me with the house and then helped me move in.
What I really love about you is how knowledgeable you are when it comes to movies, video games, and music because seeing the twinkle in your eye when I ask you to unload your vast knowledge about something related to one of those topics I see how excited you become. I love that you come to ask me about tech products and other things make me feel empowered and excited.
The most fun I have is when I turn on some music, and we just start singing or dancing. Not really worried about anything. What really took me by surprise recently is that I never knew about your love of history and learning about history.
With every passing year that we are together the more, I feel blessed to call you mine. I cannot stop thinking about all the fun we have together. I look forward to many more years of laughter and good times with you. I love you.
I have been slacking on my posting… shame on me. I need to get better about posting here on my blog because I have so much to share with the world and the fact that I am slacking on that is only being detrimental to my hope of educating the world about my gift.
I have been so busy but I definitely need to stop making excuses and get to posting (haha) and share my story and give you a glimpse into my life.
I had an internship from November of last year and while I was there they kept giving me hope that maybe there would be a potential for it to turn into a job, and at about the same time I was taking care of my aunt who had double knee replacement surgery however while I was still taking care of my aunt the business that I was interning at called me in for a meeting and they said that it would not become a job and so I left at the end of March of this year and since then I have not been doing much of anything.
I admit that looking for a job has been extremely testing and frustrating and there have been getting upset and unmotivated at times, I have applied to many jobs (honestly I think I lost count) and I have yet to have an interview I am starting to get really annoyed because I think that a lot of people can’t look past the fact that I have a disability.
All my life I have fought and struggled to not to let my disability define who I am but now, even more, when I am looking and applying for jobs I feel that employers are not looking at how talented and gifted I am or the gifts that I can bring to the table, instead they see my disability, not the person who is standing in front of them.
I had a wonderful Thanksgiving with my loved ones and I ate a little bit too much of the amazingly good food. Here is are the pictures
I finally finished a big project and I have added a couple of pictures. It took me longer than I had initially planned and these are two different pictures of this blanket that I crocheted.
Hopefully, my next post will come much sooner. I promise that it will. Because I am getting to the point where I am becoming more outspoken.
This is my first blog and my first blog entry. This is a learning experience for me, so this will probably not be perfect right out of the gate so to speak. This will be an adventure for me learning how to write and manage a blog.
This blog is mainly about me and my life with Williams Syndrome but there will be entries talking about a variety of topics also.
The reason why I decided to start this blog is that not a lot of people know about my disability. The main reason is that it is not as talked about as Autism or Down’s Syndrome.
I want this blog to be treated and respected as a safe and welcome place for individuals with, family members and loved ones of, supports of someone with Williams Syndrome, also anyone who is interested in learning about or learning more about Williams Syndrome are welcome.
I also want everyone to know that you can ask anything but anyone who writes inappropriate questions or comments will be given ONE warning then I will block you.
Below I have shared some general information about what Williams Syndrome is, how it affects those who have WS and other information on WS. I will write a later blog entry about me and my WS.
What is Williams Syndrome?
Williams Syndrome (WS) is a developmental disorder that affects many parts of the body. Facial features frequently include a broad forehead, short nose and full cheeks, an appearance that has been described as “elfin”. Mild to moderate intellectual disability with visual-spatial tasks such as drawing and fewer problems with language is typical. Those affected often have an outgoing personality and interact readily with strangers. Problems with teeth, heart problems, especially supravalvular aortic stenosis, and periods of high blood calcium are common.
Williams syndrome is caused by a genetic abnormality, specifically a deletion of about 27 genes from the long arm of one of the two chromosome 7s. Typically this occurs as a random event during the formation of the egg or sperm from which a person develops. On rare occasions, it is inherited from an affected parent in an autosomal dominant manner. The diagnosis is typically suspected based on symptoms and confirmed by genetic testing.
Treatment includes special education programs and various types of therapy. Surgery may be done to correct heart problems. Dietary changes or medications may be required for high blood calcium.
The syndrome was first described in 1961 by New Zealander John C.P. Williams. Williams syndrome affects between 1 in 7,500 to 1 in 20,000 people at birth. Life expectancy is less than that of the general population, mostly due to the increased rates of heart disease.
Signs & Symptoms
The most common symptoms of Williams Syndrome are heart defects and unusual facial features. Other symptoms include failure to gain weight appropriately in infancy (failure to thrive) and low muscle tone. Individuals with Williams syndrome tend to have widely spaced teeth, a long philtrum, and a flattened nasal bridge.
Most individuals with Williams syndrome are highly verbal relative to their IQ, and are overly sociable, having what has been described as a “cocktail party” type personality. Individuals with Williams Syndrome hyperfocus on the eyes of others in social engagements.
Individuals with Williams syndrome often have hyperacusia and phonophobia which resembles noise-induced hearing loss, but this may be due to a malfunctioning auditory nerve. However, individuals with WS can also tend to demonstrate a love of music, and they appear significantly more likely to possess absolute pitch. There also appears to be a higher prevalence of left-handedness and left-eye dominance.
Ophthalmologic issues are common in Williams syndrome. Up to 75% of subjects in some studies have strabismus (ocular misalignment), particularly esotropia, due to inherent subnormal binocular visual function and cognitive deficits in visuospatial construction. Individuals with Williams syndrome have problems with visual processing, but this is related to difficulty in dealing with complex spatial relationships rather than depth perception per se.
Because of the multiple genes that are missing in people with Williams Syndrome, there are many effects on the brain, including abnormalities in the cerebellum, right parietal lobe, and left frontal cortical regions. This pattern is consistent with the visual-spatial disabilities and problems with behavioral timing often seen in Williams Syndrome.
People with Williams syndrome often exhibit gross motor difficulties, including trouble walking downstairs, as well as overactive motor reflexes (hyperreflexia) and hyperactive, involuntary movement of the eyes (nystagmus). The parietal-dorsal area handles visual processing that supports visual-spatial analysis of the environment, while the ventral is related to semantic recognition of visual stimuli, as well as the recognition of faces.
People with Williams syndrome are often affable and hyperverbal, demonstrating the decreased inhibition ability that stems from dorsal-frontal deficits. Some studies suggest that the amygdala of a person with Williams syndrome has a greater volume than the average person’s (though it is smaller than average in childhood).
In general, neuroimaging studies demonstrate that individuals with Williams Syndrome have diminished amygdala reactivity in response to socially frightening stimuli (such as disapproving faces) but demonstrate hyperreactivity in the amygdala when presented with nonsocial fear stimuli (such as frightening animals).
This may partially account for the apparent absence of social inhibition observed in individuals with the syndrome, as well as the prevalence of anxious symptoms (but see fear for details on the relationship between the amygdala and fear response). There is also evidence that individuals with Williams exhibit hyper amygdala activity when viewing happy facial expressions.
Increased volume and activation of the left auditory cortex has been observed in people with Williams syndrome, which has been interpreted as a neural correlate of patients’ rhythm propensity and fondness for music. Similar sizes of the auditory cortex have been previously reported only in professional musicians.
Research on the development of the syndrome suggests that congenital heart disease is typically present at an early age, often at the infant’s first pediatric appointment. Heart problems in infancy often lead to the initial diagnosis of Williams syndrome.
Williams syndrome is also marked by a delay in development of motor skills. Infants with Williams develop the ability to lift their heads and sit without support months later than typically developing children. These delays continue into childhood, where patients with Williams syndrome are delayed in learning to walk. In young children, the observed motor delay is around five to six months, though some research suggests that children with Williams syndrome have a delay in development that becomes more extreme with age.
Children with motor delays as a result of Williams syndrome are particularly behind in development of coordination, fine motor skills such as writing and drawing, response time, and strength and dexterity of the arms. Impaired motor ability persists (and possibly worsens) as children with Williams syndrome reach adolescence.
Hypertension, gastrointestinal problems, and genitourinary symptoms often persist into adulthood, as well as cardiovascular problems. Adults with Williams syndrome are typically limited in their ability to live independently or work in competitive employment settings, but this developmental impairment is attributed more to psychological symptoms than physiological problems.
Social and psychological
Individuals with Williams Syndrome report higher anxiety levels as well as phobia development, which may be associated with hyperacusis (high sensitivity to certain frequencies of sound).
Compared with other children with delays, those with Williams syndrome display a significantly greater number of fears. 35% of these children met the DSM definition of having a phobia as compared with 1–4.3% for those with other types of developmental delays.
Williams Syndrome is also strongly associated with attention deficit hyperactivity disorder and related psychological symptoms such as poor concentration, hyperactivity, and social disinhibition.
Furthermore, cognitive abilities (IQs) of individuals with WMS typically range from mild-to-moderate levels of intellectual disability. One study of 306 children with Williams syndrome found IQ scores ranging from 40 to 112 with a mean of 69.32 (an IQ score of 100 is the average in nonaffected populations).IQ scores above this range have been reported in individuals with smaller genetic deletions.
In particular, individuals with Williams Syndrome experience challenges in visual-motor skills and visuospatial construction. Most affected individuals are unable to spatially orient themselves and many experience difficulties when given a task that requires even the most basic visual problem-solving. Many adults with Williams syndrome cannot complete a simple six-piece puzzle designed for young children, for example. These visuospatial deficits may be related to damage to the dorsal cortical pathway for visual processing.
Despite their physical and cognitive deficits, individuals with Williams Syndrome exhibit impressive social and verbal abilities. Williams patients can be highly verbal relative to their IQ. When children with Williams syndrome are asked to name an array of animals, they may well list such a wild assortment of creatures as a koala, saber-toothed cat, vulture, unicorn, sea lion, yak, ibex and Brontosaurus, a far greater verbal array than would be expected of children with IQs in the 60s. Some other strengths that have been associated with Williams syndrome are auditory short-term memory and facial recognition skills.
The language used by individuals with Williams syndrome differs notably from unaffected populations, including individuals matched for IQ. People with Williams syndrome tend to use speech that is rich in emotional descriptors, high in prosody (exaggerated rhythm and emotional intensity) and features unusual terms and strange idioms.
Among the hallmark traits of individuals with Williams Syndrome is an apparent lack of social inhibition.
Dykens and Rosner (1999) found that
100% of those with Williams syndrome were kind-spirited
90% sought the company of others
87% empathize with others’ pain, 84% are caring
83% are unselfish/forgiving
75% never go unnoticed in a group
75% are happy when others do well.
Infants with Williams syndrome make normal and frequent eye contact, and young children with Williams will often approach and hug strangers. Individuals affected by Williams syndrome typically have high empathy and are rarely observed displaying aggression. In regard to empathy, they show relative strength in reading people’s eyes to gauge intentions, emotions, and mental states.
The level of friendliness observed in people with Williams is often inappropriate for the social setting, however, and teens and adults with Williams syndrome often experience social isolation, frustration, and loneliness despite their clear desire to connect to other people.
While these children often came off as happy due to their sociable nature, often there are internal drawbacks to the way they act. 76–86% of these children were reported as believing that they either had few friends or problems with their friends.
This is possibly due to the fact that although they are very friendly to strangers and love meeting new people, they may have trouble interacting on a deeper level.
73-93% were reported as unreserved with strangers
67% highly sensitive to rejection
65% susceptible to teasing
The statistic for exploitation and abuse was unavailable.
This last one is a significant problem. People with Williams Syndrome are frequently very trusting and want more than anything to make friends, leading them to submit to requests that under normal circumstances would be rejected. There are external problems as well.
91–96% demonstrate inattention
25–37% fighting and aggressive behavior
In one experiment, a group of children with Williams Syndrome showed no signs of racial bias, unlike children without the syndrome. They did show gender bias, however, suggesting separate mechanisms for these biases.
Williams syndrome is a microdeletion syndrome caused by the spontaneous deletion of genetic material from chromosome 7 the deleted region includes more than 25 genes, and researchers believe that being hemizygous for these genes probably contributes to the characteristic features of this syndrome.
Researchers have found this hemizygosity for the ELN gene, which codes for the protein elastin, is associated with the connective-tissue abnormalities and cardiovascular disease (specifically supra valvular aortic stenosis and supra valvular pulmonary stenosis) found in many people with this syndrome.
The insufficient supply of elastin may also be the cause of full cheeks, harsh or hoarse voice, hernias and bladder diverticula often found in those with Williams Syndrome. Studies suggest that hemizygosity, and perhaps other genes may help explain the characteristic difficulties with visual-spatial tasks.
Additionally, there is evidence that the hemizygosity in several of these genes, including CLIP2, may contribute to the unique behavioral characteristics, learning disabilities and other cognitive difficulties seen in Williams Syndrome.
According to the Williams Syndrome Association, diagnosis of Williams Syndrome begins with the recognition of physical symptoms and markers, which is followed by a confirmatory genetic test. The physical signs that often indicate a suspected case of Williams syndrome include puffiness around the eyes, a long philtrum, and a stellate pattern in the iris.
Physiological symptoms that often contribute to a Williams Syndrome diagnosis are cardiovascular problems, particularly aortic or pulmonary stenosis, as well as feeding disturbance in infants. Developmental delays are often taken as an initial sign of the syndrome, as well.
This confirmatory genetic test has been validated in epidemiological studies of the syndrome and has been demonstrated to be a more effective method of identifying Williams syndrome than previous methods, which often relied on the presence of cardiovascular problems and facial features (which, while common, are not always present).
Some diagnostic studies suggest that reliance on facial features to identify Williams syndrome may cause a misdiagnosis of the condition. Among the more reliable features suggestive of Williams are congenital heart disease, periorbital fullness (“puffy” eyes), and the presence of a long smooth philtrum. Less reliable signs of the syndrome include anteverted nostrils, a wide mouth, and an elongated neck. Researchers indicate that even with significant clinical experience, it is difficult to reliably identify Williams syndrome based on facial features alone.
There is no cure for Williams syndrome. Suggestions include avoidance of extra calcium and vitamin D, as well as treating high levels of blood calcium. Blood vessel narrowing can be a significant health problem and is treated on an individual basis.
Physical therapy is helpful to patients with joint stiffness and low muscle tone. Developmental and speech therapy can also help children and increase the success of their social interactions. Other treatments are based on a patient’s particular symptoms.
The American Academy of Pediatrics recommends annual cardiology evaluations for individuals with Williams syndrome.
Other recommended assessments include:
an examination for an inguinal hernia
objective hearing assessment
blood pressure measurement
developmental and growth evaluation
orthopedic assessments on joints
ongoing feeding and dietary assessments to manage constipation and urinary problems
Behavioral treatments have been shown to be effective. In regard to social skills, it may be effective to channel their nature by teaching basic skills. Some of these are the appropriate way to approach someone, how and when to socialize in settings such as school or the workplace, and warning of the signs and dangers of exploitation.
For the fear that they demonstrate cognitive-behavioral approaches, such as therapy, are the recommended treatment. One of the things to be careful of with this approach is to make sure that the patients’ charming nature does not mask any underlying feelings.
Perhaps the most effective treatment for those with Williams Syndrome is music. Those with Williams syndrome have shown a relative strength in regard to music, albeit only in pitch and rhythm tasks. Not only do they show a strength in the field but also a particular fondness for it.
It has been shown that music may help with the internal and external anxiety that these people are more likely to be afflicted with. Something of note is that the typical person processes music in the superior temporal and middle temporal gyri. Those with Williams Syndrome have a reduced activation in these areas but an increase in the right amygdala and cerebellum.
People affected by Williams Syndrome are supported by multiple organizations, including the Canadian Association for Williams Syndrome and the Williams Syndrome Registry.
Williams syndrome has historically been estimated to occur in roughly 1 in every 20,000 live births. However, more recent epidemiological studies have placed the occurrence rate at closer to 1 in every 7,500 live births, a significantly larger prevalence.
As an increasing body of evidence suggests that Williams Syndrome is more common than originally noted (approximately 6% of all genetic cases of developmental disability), researchers have begun to theorize past under-diagnosis of the syndrome.
One theorized reason for the increase in epidemiological estimates is that there exists a substantial minority of individuals with the genetic markers of Williams Syndrome who lack the characteristic facial features, or the diminished IQ considered to be diagnostic of the syndrome, who often are not immediately recognized as people with the syndrome.
Williams Syndrome was first described by J. C. P. Williams and his colleagues, who wrote in 1961 of four patients with supra valvular aortic stenosis, mental disability, and facial features including a broad forehead, large chin, low-set, “drooping” cheeks, widely spaced eyes, and a wide-set mouth. A year after this report, German physician A. J. Beuren described three new patients with the same presentation.
This led to the syndrome’s full original name of Williams-Beuren syndrome, which is still used in some medical publications. From 1964 to 1975, small research reports broadened medical knowledge of this syndrome’s cardiovascular problems. Then in 1975, K. Jones and D. Smith conducted a large-scale report on numerous patients with Williams syndrome, ranging in age from infancy to adulthood, and described the behavioral and observable physical symptoms in greater detail than previously recorded.
Society and culture
The adjective “elfin” may have originated to describe the facial features of people with Williams syndrome; before Williams Syndrome’s scientific cause was understood, people believed that individuals with the syndrome, who have exceptionally charming and kind personalities, had extraordinary, even magical, powers. This is often believed to be the origin of the folklore of elves, fairies and other forms of the ‘good people’ or ‘wee folk’ present in English folklore.