Redefining Disability Week 12: Describe the biggest challenge you face due to disability

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As a parent of individuals with special needs, the biggest challenge I face due to disability is helping my children build authentic friendships with their peers. My boys exhibit many of the characteristics of autism:

  • difficulty with eye contact
  • Lack of an understanding of personal space
  • Lack of inhibitions
  • Insatiable curiosity regarding one particular topic
  • Difficulty maintaining interest in topics they don’t know or understand
  • Difficulty reading emotion and other social cues

Let me be clear that most people treat my boys with respect and extend infinite patience in carrying on conversations with them. One of my boys is passionate about vehicles. He knows all the makes and models, reads the consumer reports, and can tell you which ones are recommended. He will stop anyone and everyone and carry on a conversation about vehicles. If people ignore him, he just gets closer and repeats his question.

Adults understand this type of behaviour and carry on a conversation. Peers expect to have a conversation that may include a discussion about vehicles, but will also include many other topics. When this doesn’t happen, peers tend to respond in one of two ways: avoidance or interaction based on pity. Some peers will answer one or two questions and then move on. Others will continue to reach out, but the relationship is more of an older brother or sister dealing with a younger sibling.

I’m not sure my sons recognize what they are missing. Is that a good thing? Yes, in that the sting of rejection is not felt by them. No, in that there is no motivation to change, except to comply with an adult who is telling them they should or shouldn’t do something. My boys are more than happy to lose themselves in a book or play on their iPads instead of conversing with peers. We all tend to stick to situations where we feel safe, and they are no different. The difference is that most people have a larger repertoire of skills to call on when dealing with social situations, especially difficult ones.

As a parent, there are many times I don’t know how to deal with this issue of helping my boys build authentic peer relationships. We’ve tried speech therapy, small group therapy, taking our boys to places they will be able to interact with peers, and modelling expected interactions. Sometimes we push our boys into situations they would not choose on their own. Other times we allow them to make the choices. I’m thankful for the people who make the time to interact with our boys, but I do grieve for them and hope that some day they will have a friendship based on more than choice and respect.

What is the biggest challenge you face in dealing with disability?


 

redefining-disability1

In 2014, Rose Fischer started a Redefining Disability Challenge. This year she is continuing to invite people to join the challenge by blogging about a set of questions she developed. I’ve decided to join this challenge and most Mondays (or Tuesdays!) will be answering one of her questions.


Favourite Quotes from The Art of Work by Jeff Goins

Art of Work

In January I received an invitation to join the launch team for The Art of Work by Jeff Goins. Although the official launch date of the book is tomorrow, March 24, 2015, everyone on the launch team received a copy of the book a couple of months ago. In this book, Jeff shares from his personal experience as well as from the experiences of others about how to discover what you are meant to do with your life.

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I found myself nodding my head and sighing with relief while I read the book. Jeff tells it like it is: finding our calling is often a confusing and messy path. Many times we have to work for a living while we pursue our passion on the side. If we’re not careful, we can become so obsessed with our passion that we shut out our family and friends – the very people we need to keep us grounded:

Every story of success is, in fact, a story of community.”

“As you strive to achieve your life’s work, be careful of at what costs you chase it. It will be easy to resent those closest to you, to make your biggest supporters into your worst enemies. To hoard your work away from the rest of life. You may be tempted to see every relationship not as a lifeline, but as a competing force, something to be mistrusted. And in doing this, you may destroy the very things that could save you.”

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Jeff addresses many issues, like commitment, apprenticeship, and learning to embrace failure as a friend:

The risk of not committing is greater than the cost of making the wrong choice. Because when you fail, you learn.”

“Failure is a friend dressed up like an enemy.”

“Will you wallow in regret, wondering why such a thing has befallen you, or will you choose to act, making the most of your obstacle, and allow it to evolve into an opportunity?”

“Successful people and organizations don’t succeed in spite of failure; they succeed because of it.”

 

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I especially appreciate Jeff’s reminders to those of us who are passionate about the arts:

 This is an important distinction when considering your life’s work. Most people won’t continue doing something they aren’t passionate about, especially when it gets hard. Putting an activity through painful practice is a great way to determine your direction in life. If you can do something when it’s not fun, even when you’re exhausted and bored and want to give up, then it just might be your calling.”

“Humility is a prerequisite for epiphany. Without it, your dream will be short-lived and self-centered.”

“Answering a call will sometimes feel that way. It won’t make sense and may even open you up to rejection and criticism, but in your heart you will know it’s right.”

“We are caretakers of our vocations, stewards entrusted with a vision that is bigger than us. Our responsibility is not to hoard our gifts but to use them in challenging ways so that others can benefit.”

The Art of Work is a book everyone could benefit from, because we all want to know that our lives will count for something:

Success isn’t so much what you do with your life; it’s what you leave behind. Which may be what a calling is all about: leaving a legacy that matters.”

Get your Free Audio Book + Bonuses by purchasing the book from any retailer!

 

 


Social Media Blog Hop Week 2: Favourite Graphic Program/App

Social Media Blog Hop

No matter which social media platform you use, you need great graphics. Images draw more attention to your content and improve your chances of being seen and heard. Make sure when you use pictures, that you use royalty free images and are NOT infringing on copyright. There are sites which offer free graphics, but I prefer to either use my own pictures or pay a small fee to use pictures taken by others.

I recommend the following sources for graphics:

  • Dollarphotoclub.com (High resolution royalty free images AND vectors are available for $1.00 each and may be used for commercial purposes.)
  • Clickartonline.com (Clipart, photos, photo objects, fonts, sounds, web graphics, and animations are all available to use. The yearly fee is $39.99 for unlimited downloads and you are able to select the size of the image you want to download.)
  • Take your own pictures using your phone, iPad, or camera. (Take the time to edit your images and present the best visual appeal you can. You may want to use an online editor like PicMonkey)

Once you have a graphic to work with, you can add text and personality to them by using design apps or software.

Created on Canva
Created on Canva
Created on Canva with a picture I took on my iPad
Created on Canva with a picture I took on my iPad

 

 

 

 

 

 

 

I recommend:

Canva

(This program is available online at www.canva.com or as an app from iTunes. You can either sign up for a free account or sign in with your Facebook or Twitter account.)

Canva has predesigned “canvas” sizes for: Food & Drink Menu, Social Media, Presentation, Poster, Facebook Cover, Facebook Post, Instagram, Blog Graphic, A4 Document, Card, Email Header, Twitter Post, Invitation, Business Card, Album/Podcast Cover, Twitter Header, Pinterest, Real Estate Flyer, Google+ Cover, Kindle Cover, Photo Collage, Facebook Ad, and Facebook App. You are also able to select “Use custom dimensions” in the top right hand corner and create a canvas using either pixels or inches.

Canva provides many options for design with text in various fonts, background colours, layout options, and uploading your own pictures. Canva also provides access to 1,000,000 images, some of which are free, and others available for $1.00. Basically, if you can dream it, you can design it on Canva.

I like the many options Canva provides, but making an image can be time intensive. I’ve also noticed that sometimes the downloads (either png or pdf) are not as clear as I would like them to be. But for a free program, it’s a great tool.

Rectangular image created on WordSwag with an image from Pixabay
Rectangular image created on WordSwag with an image from Pixabay

WordSwag

Created on WordSwag with a free image that comes with the app
Created on WordSwag with a free image that comes with the app

As far as I know, WordSwag is only available as an app. (I use it on my iPad.) WordSwag is intuitive, easy to use and great when you want a quick blog graphic or want to share a quote on social media. It has several options available, including access to images on Pixabay (over 330,000 free photos, illustrations, and vector graphics in the public domain).

The graphics created on Wordswag are either rectangular or square. Wordswag is not very flexible, but still provides great graphics in very little time. (All of my graphics for this year’s blog hops were created on WordSwag.)

Created on WordSwag with an image from Pixabay
Created on WordSwag with an image from Pixabay

 

 

What is your favourite source for graphics to use on your social media sites? Enter a comment or link in to our blog hop below.

 

 

 

 

 


Feel free to share the blog hop button on your site. Here’s the code:

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Redefining Disability Week 11: Describe a good day living with disability

A good day with disability

As a mother, I think my dreams and aspirations for my children are fairly normal. I want them to be able to have friends, fit into the community they live in, learn about things they enjoy, and contribute to society. I also want them to know they are loved, accepted, and appreciated – not only by me, but by the community at large.

Last Thursday was a good day. The school our children attend called on Tuesday to let me know a tubing trip was being planned and asked if it would be okay for Luke and Levi to participate. I confirmed I would be happy to have my boys experience the activity with their peers. Thursday morning, Levi said he didn’t want to go. We told him he needed to go any way, because we know that new activities are intimidating for him, but he usually enjoys them once he’s involved. We packed extra snacks, layers of clothes, and talked up how much fun it would be. Both boys left home with smiles on their faces. We heard nothing until about 2 p.m. Then we received pictures from an educational assistant. Both boys had smiles on their faces. The text said, “The boys had an awesome time. They spent every minute tubing.” (Sorry, but I can’t share pictures due to safety concerns with people who’ve been involved with the boys in the past.)

Saturday was another good day. On Friday, Levi told me that he’d like some pie. (I found out later that the math teacher had the students participate in activities that day related to Pi Day.) I told him we could make pies the next day. When it came to making pies, Levi wasn’t interested, but Luke, Jayson, and Dorothy were. Jayson and Dorothy worked together to peel apples. I helped core them and made the pie crust. After I rolled the crust out, Jayson put the apples into the pie and added the sugar, cinnamon, flour, and butter. Then I showed him how to moisten the edges of the crust so that the top crust adhered to the bottom. He also made a pattern on the crust which allowed the steam to escape while the pie was baking. Luke wanted lemon meringue pies. He helped me measure the ingredients into a pot, and stirred for a while. Then he worked with his dad to roll out the crusts while I continued to cook the lemon filling. Both boys were very proud of their pies.

It just so happened that I had an online meeting with executive members from InScribe Christian Writers’ Fellowship on Saturday afternoon. The topic of pies came up and my boys were able to show off their pies. The ladies oohed and ahhed over them. After the meeting, we all enjoyed a bowl of soup and then . . . pie and ice-cream. The smiles of satisfaction were all the thanks I needed. 🙂

Pies for Pi Day

I would love to know how my children would answer this question, but I doubt they would have an answer they could articulate. Since they were born with their genetic make-up, it’s a normal part of who they are; they don’t see themselves as “disabled” – and that’s a very good thing. They would probably describe a good day as having ice-cream, or making a trip to Edmonton. (We go to Edmonton, a 2 1/2 hour drive one way, for appointments at least once a month. Levi especially enjoys watching the vehicles as we drive, and can identify them better than anyone in our family, even Dad! We often go to a toy store after the appointments are done. Sometimes we just look, and other times each of them are able to choose something up to a certain price.)

I’d love to hear what a good day looks like in your world. Let’s celebrate those good days together!


redefining-disability1

In 2014, Rose Fischer started a Redefining Disability Challenge. This year she is continuing to invite people to join the challenge by blogging about a set of questions she developed. I’ve decided to join this challenge and most Mondays (or Tuesdays!) will be answering one of her questions.


Redefining Disability Week 9: Leisure Activities

Leisure activities and disability Leisure activities can be a challenge for families and individuals who live with special needs. Some individuals are able to participate in most activities while others either have to have activities adapted or participate in a limited way.

This summer we had the privilege of hosting my brother and his family. My niece is in a wheel chair, but she doesn’t let that stop her if she can help it. She enjoyed participating in a family water fight, although she was frustrated that she couldn’t actually control where and when the water was dumped. She also enjoyed a trip to our local blueberry patch, strapped into the seat of a motorized golf cart. While the rest of us picked, she held the bucket for us. When she had enough of that, she figured out how to push the gas pedal and laughed hysterically when she bumped into a tree. Her positive attitude inspires me.

Our twins are able to walk and even run – something a paediatrician thought would never be possible. However, due to cognitive limitations and poor motor control, they are not able to participate in team sports.

In The Spark: A Mother’s Story of Nurturing Genius, Kristine Barnett describes it this way:

“Would my son never know what it felt like to shout ‘Goooaaaaal!’ or to douse the kid who’d pitched the winning game with Gatorade? Would he never know how it felt to slide into home plate, seconds ahead of the tag? Did his autism mean that Jake would never make a touchdown or get grass stains on his soccer uniform?”

She goes on to describe how she set up weekly events where special needs were not a barrier:

“We had the soccer coach from the high school come to teach the kids soccer…we got members of the U.S. Hockey League’s Indiana Ice to come and play on the carpet with the kids. When we finally moved out to the baseball diamond, I maxed out my credit card to buy different-colored T-shirts with the team names on them so that the kids would know how it felt to be on a team. For many of the lower-functioning kids, sitting in that dugout was the first time they’d been apart from a parent or caregiver. But they were fine, because they were with their teams, and of course, their parents were cheering them on like crazy from the bleachers. By that time, we all felt like one big, happy family.

It continues to amaze me how much we all take for granted. Until I was ushered into the world of special needs by way of my children, I didn’t think twice about leisure activities. Now I not only plan our family schedule, but often I also help create opportunities so that my children are able to participate and enjoy the activities. We go swimming, skating, tobogganing, build snowmen, travel, read, take photographs, and garden. We laugh and play together. Our leisure may look different, and we may not participate in some activities, but life is still rich and full. The smiles on my children’s faces are proof.

What are leisure activities like for you and your family?


redefining-disability1

In 2014, Rose Fischer started a Redefining Disability Challenge. This year she is continuing to invite people to join the challenge by blogging about a set of questions she developed. I’ve decided to join this challenge and most Mondays (or Tuesdays!) will be answering one of her questions.


2015 Social Media Blog Hop Week 1 – Favourite Social Media Site

Social Media Blog Hop

This week we are kicking off the 2015 social media blog hop with the question: What is your favourite social media site and why?

Facebook is where I spend most of my time on social media. I have a personal profile and author page, belong to many groups, and also administer pages for Glendon Playground and Park Society as well as InScribe Christian Writers’ Fellowship. I appreciate the following benefits of Facebook:

1. My personal profile allows connection with an audience as large or small as I choose. Facebook allows me to decide whether I share information with specific people, only my friends, or everyone who chooses to access the information. I’m able to post plain text, pictures, and videos and so are my friends. Facebook is a great way to build connections with people I’ve just met as well as keep in touch with friends I’ve had for years. Some of my friends on Facebook are people I went to school with in grade 6 over 30 years ago.

2. Facebook Pages allow me to spend as little or as much as I want for marketing. There is no charge to have a Facebook Page. Although Facebook does regulate how many people see the information I post on my page, it does provide a free venue for sharing information. If I want to increase the exposure of a particular post, I’m able to pay to boost it. Facebook allows me to pick the demographics of the people I’m targeting with my content so that I’m not paying to send it to those who probably are not interested.

3. Facebook Groups provide an avenue for me to build closer relationship with a group of people who are all interested and passionate about the things that I’m learning about or doing. Through groups I’ve participated in Bible studies, received help and support in healthy living and marriage, and had the opportunity to learn and share about writing, blogging, marketing, my book launches and many more things. Groups can be public, private, or closed – allowing administrators to choose who belongs to the group and how far and wide the information is shared.

4. Facebook Events allow people to share information about upcoming events including anything from a baby shower to a drama presentation to a book launch. Event pages can help market the event, provide the possibility to participate either in person or virtually, and also provide a venue to share pictures, etc. during and after the event.

Some facts I try to keep in mind when I use Facebook:

  • Facebook is hosting my information and can choose to close my accounts at any time.
  • Although Facebook has security measures in place, I still choose not to post certain content because once it’s on Facebook I may not be able to control what happens with it.
  • I never post on social media when I’m angry or post anything that I would be ashamed to see on the front page of my local paper.

My second choice for social media is Twitter. But that will have to wait for another day!

What’s your favourite social media site? Why?


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Feel free to share the blog hop button on your site. Here’s the code:

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Redefining Disability Week 8: Family life and disability

Disability and Family Life

In our experience, raising children who have special needs affects every facet of family life: family activities and recreational choices, schedule, discipline, holidays, even the type of work and ministry parents have. I don’t see living with a disability as a disadvantage, but it is different.

The “disabilities” of our children include difficulty with balance, cognitive limitations, fine motor challenges, behavioural challenges, hearing loss, and extreme near-sightedness (myopia). This means that although our children are able to participate in most activities, the activities will look different. For example, even though our twins are fourteen, they do not have the motor control necessary to participate in bowling without some help. They love the activity, but it has to be adapted for them. This means that family activities take more planning and preparation for our family than for some other families. The end result is that we don’t participate in as many activities because of time and energy limitations.

Our family schedule is also different from many families because our children seem to require more sleep. On school nights we aim to have our four younger children in bed between 8 and 9 p.m. We have discovered by trial and error that less sleep for our children affects everyone negatively. (I’ll leave the specifics to your imagination 🙂 ) Our schedule also has to allow more time for most every day activities that most people don’t even think about – dressing, eating, bathing, etc.

Discipline (teaching and training children) is a challenge for all families. In our family we have to make sure we consider our children’s abilities. I’m thankful our children have the ability to learn. Sometimes they learn quickly; other times it takes hundreds of repetitions to teach them. Some skills will never be attainable due to physical and cognitive limitations. For some of our children, we can assign extra chores. For other children assigning extra chores means that one of us adults will be working right beside the child, sometimes hand-over-hand. We’ve had to assess consequences to make sure one child’s consequences do not severely impact other members of the family.

Our family has had the opportunity and pleasure of going on some holidays many people don’t experience. We have made multiple trips to the United States and a couple trips across Canada. Our children love to travel. Probably our most memorable trip was traveling through 28 states in 30 days. A feat in itself, but more of a challenge when you have a family member without bowel control. Again, pre-planning is important, and generous amounts of time and energy.

One fact I’ve had to come to grips with is that I will not be able to work away from home full time, at least not in the foreseeable future. The special needs of our children require that my schedule is flexible. I’m thankful that I’ve been able to find ways to contribute to our community and broader world through writing and other work on my computer, and also through prayer.

It’s time for me to put breakfast on the table and start a new day. Thanks for stopping by. Does your family live with disabilities? How does it affect you? If your family is not affected by disabilities, did you find this post surprising in any way? Leave a comment and let me know.


redefining-disability1

Last year Rose Fischer started a Redefining Disability Challenge. This year she is continuing to invite people to join the challenge by blogging about a set of questions she developed. I’ve decided to join this challenge and most Mondays (or Tuesdays!) will be answering one of her questions.