Redefining Disability Week 7: Challenges with School Life

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My husband and I believe that education works best when parents and the school work hand in hand. Over the thirteen years we have had our children in school, we have worked hard at establishing relationships with teachers, communicating, asking questions, and solving problems. We have had the privilege of working with many dedicated teachers, but school life continues to be a challenge for our specially-abled children.

Our first major challenge was accessing funding. When our twins were in kindergarten, the consultants we worked with told us our boys needed one-on-one assistance because their needs were so different. I dutifully filled out the required paperwork and handed it in mid-December. The principal told me funding should be approved and appropriate staff hired by the end of January. Every two weeks I checked in with the principal. He told me the paperwork was in and we needed to wait. I asked in January, then in February, and March, and April. Every time I was given the same answer. Finally in May I phoned the Minister of Education’s office. A couple hours later I discovered funding had been approved in December, but somehow communication fell through the cracks. I’m not typically an angry person, but that day I had to calm myself down for a few hours before I went to see the principal.

In Alberta there is funding for early childhood education (PUF) and then different funding when a child starts grade 1. After the initial funding issue was resolved, the principal told me our boys would probably go back to only one teacher assistant when they moved on to grade 1. After talking to some other parents who have children with special needs, I requested a meeting with the school division’s special education coordinator. In the meeting I outlined our boys needs and requested that two assistants continue to be provided, one for each boy. We took a break from our meeting and the coordinator went outside to observe our boys at recess time. It wasn’t until years later that he told me the story:

The boys played in a sandbox. When the bell rang, twin one stopped what he was doing and stood up. Twin two kept playing as if there had been no bell. Twin one spoke to twin two, but twin two kept playing. Twin one grabbed twin two’s hand, but twin two resisted. This continued for a while. By this time most of the other students were already back inside the school building. Twin one came to the coordinator, grabbed his hand and pulled him over to twin two. No words were exchanged, but the coordinator received the message loud and clear that he was being asked to help get twin two back into the building.

Since that time our twins have had one-on-one help half the school day and two-on-one help the other half. We were fortunate to have the same caring individuals work with our boys for seven years. We have faced other challenges since then – funding was available, but no therapists to fill the need; challenges with speech; communication gaps; challenges with social skills; changes in staff; misunderstandings (including having teachers phone Children’s Services instead of communicating with us).

I’m thankful for the progress our boys have made. Our task as advocates is challenging, but also rewarding. When I see our children laughing and playing it gives me the strength to go on.


2015 Writers’ Blog Hop Week 4 – Lifelong Learning

 

Today I’d like to share a couple of graphics programs that have made a huge difference for me.

WordSwag

Wordswag is a free app I downloaded onto my iPad. It’s very easy to use and is great if you want to create square graphics to use on your website or other social media. (All my blog hop graphics were made using Wordswag

Like:

  • Free app
  • Easy to use
  • Quick
  • Option to use your own photos or backgrounds included in the app
  • Includes free searchable pictures from Pixabay
  • Able to choose from many free font options; you can purchase other font options in the app
  • Built in share options to Instagram, Twitter, Facebook, Tumblr, Pinterest, Text, or E-mail.
  • Option to add a logo or watermark
  • Ability to use a graphic as a template

Don’t Like:

  • Not very flexible – can’t change the shape of the graphic (only options are rectangle or square) or select portions of font to change
  • Only available via iTunes

Canva

Canva makes design simple for everyone. Create designs for Web or print: blog graphics, presentations, Facebook covers, flyers, posters, invitations and so much more.” Canva is much more flexible than Wordswag, but it will take longer to get a graphic designed.

Like:

  • Available as an app from iTunes, or directly on the web at http://www.canva.com
  • Choose from presized canvases for social media, poster, presentation, Facebook cover, Facebook post, etc.
  • Make your own custom canvas size (in pixels, mm, or inches)
  • Free backgrounds, fonts, and layouts are available, as well as text holders, borders and other items
  • If you have your own picture, you can upload it to Canva and use it in your design
  • Other pictures, fonts, etc. are available at the cost of $1.00 each/design
  • Basically if you can imagine it, you can make it on Canva
  • When you’re done you can download the graphic as an image or as a PDF file
  • You can share the graphic right from Canva

Don’t Like:

  • It takes a lot of time to make a great design
  • Sometimes when you change something in your design, you can’t go back if you change your mind

What have you learned in the past year that has helped you in your writing?


 

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Although this is the last week of the general writers’ blog hop, there will still be a blog hop in two weeks:

Social Media Blog Hop
#1 Favourite Social Media Site – Tell us where (Facebook, Twitter, Pinterest, etc.) you spend most of your time/energy and why (Week of Mar 2)
#2 Graphics for social media – Share your favourite source/app (Week of Mar 16)
#3 Scheduling posts – How often? Do you use a program like Hootsuite? Other tips? (Week of Mar 30)
#4 Content of posts – What do you share? Where do you find content? Ratio of promotional/other? (Week of April 13)

Note: If you’re interested in participating in the social media blog hop and want an e-mail reminder, send me an email and I’ll add you to the list.


Redefining Disability Week 6 – How Disability Affects the Activities of Every Day Life

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Most of the time I’m so busy with every day life that I don’t stop to think about how much the special abilities of my children affect our activities. However, now that I think about it, most of the activities people take for granted take diligent effort with and for our children.

1. Getting Dressed

Our children are all able to dress themselves, but one son in particular has sensory issues which makes it a struggle to introduce any new pieces of clothing. He only wears “soft” things and will fight tooth and nail if we ask him to wear anything he deems inappropriate. It also takes our boys two or three times longer than most people to get dressed. Two of our boys don’t have the dexterity to get dressed any faster. Our other son is constantly distracted. Like most teens, our boys need to be reminded to change their clothes every day. 🙂

2. Eating

I’m thankful that our children are all able to feed themselves. Two of the boys are able to pour their own milk or water, but the other one needs help unless we want liquid all over the table and floor. It’s not that he needs to be more careful; he just doesn’t have the physical control necessary. At age fourteen, our twins are just starting to cut their own meat. It’s still a challenge, and sometimes the meat ends up on the floor or in their laps.

3. Making Lunches

One of our boys is able to make his lunch independently, but I still need to check and make sure he takes an appropriate amount of food with him. (He often has trouble figuring out whether he’s hungry and when he eats, he doesn’t feel full.) One of the other boys is able to spread mayonnaise or butter on his sandwiches, but cannot cut cheese slices. Our other son is a PBJ sandwich fan (but he takes sunflower buttter sandwiches to school due to other student’s nut allergies.) He’s able to make his sandwiches independently.

4. Toileting

Many of the people who have the same genetic anomaly our boys have are not able to use the bathroom independently. All three of our boys are independent, but may pull their pants down before they get the door closed, or come out before their pants are pulled up properly, or forget to wash their hands. One of our boys also still has toileting accidents on a regular basis. When we travel, we have to plan our bathroom breaks ahead of time. Even then, he still soils himself at times.

5. Specialized Equipment

We have two children who wear hearing aids. This means we need to check and maintain them regularly, instill the habit of wearing the hearing aids and storing them properly, and remember to take them out before baths or swimming. We are finally at the stage where both children are able to put their own hearing aids in – sometimes totally independently.

We have three children who wear glasses. Only one of them is able to clean them independently. All of them have fallen with their glasses on and broken them. (When the children were small, the glasses caused injury on occasion when the children fell down.) One son has been known to hurl his glasses across the classroom when he’s angry, or stomp on them, or just snap them in half.

5. School

Our boys have required assistance at school since they started preschool. One of our boys does grade level work, but needs his work “chunked” or he gets overwhelmed. When he doesn’t understand something, he sits in his chair and may shut down if a teacher or assistant doesn’t intervene. Our other two boys are good readers, but only able to participate at the level of a five to seven year-old. Now that our boys are teenagers, the difference between them and their peers is increasingly evident.

6. Sports

Our boys are not able to participate in sports at the same level as their peers. We have participated in skating, hockey, baseball, curling, and basketball. However, the participation takes a lot of extra effort on our part as parents, coaches, boys, and their peers.

7. Community Activities

Our boys would rather stay at home than participate in many activities that are an expected part of most people’s lives. One of our boys is very sensitive to sound and gets scared easily (especially by balloons and brooms – not sure why!). Our visits to playgrounds, Farmer’s Markets, sporting events, etc. are often a challenge.

Each day is a new adventure! Do you or your loved one have special abilities? How are your every day activities affected?

 


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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.


Redefining Disability Week 5 – Significant moments connected to Disability

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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.

Significant Moments in Disability

Here is this week’s question:

What are some significant moments/events in your life that connect to disability? — For example, you can talk about hearing a diagnosis for the first time, meeting a role model, learning something important that helped form your understanding of disabiliy, etc.

Our twin boys were placed with us for adoption when they were eighteen months old. They had just been taken off oxygen for the first time. We were told they had global developmental delays. We knew that one of the twins had a hearing loss. They both wore glasses. The meaning of “global developmental delays” dawned slowly:

  • They didn’t babble or make much of any sound, even when they cried.
  • It took six months of hand-over-hand feeding before one of the twins learned to feed himself.
  • We took our boys to our local health unit to get some tips on feeding and found out we knew more than the SLP who was supposed to help us.
  • They took their first steps at 27 months.
  • One day Levi climbed up on a chair. I cheered for a split second before he took a terrible tumble and landed on his head on the floor, because he didn’t have any ability to balance himself.
  • When the boys were two, we discovered they had an unusual genetic make up – an extra strand on the 15th chromosome. The genetics doctor had 10 case studies from all of North America with varying symptoms and prognoses. He did comment that he was encouraged by what the boys had been able to learn already.
  • We learned SEE2 (Signing Exact English) to facilitate communication because the boys didn’t talk until age four.
  • Although we were diligent in trying, the boys were not able to be toilet trained until they were five.
  • We decided to have the boys repeat grade 1 because they seemed close to catching up with their peers. However, as the year progressed, the gap between their knowledge and the knowledge of the other grade ones widened. I cried the day I realized our boys would never fit in.
  • We are often told the boys are in the 1st percentile for various skills.
  • Sometimes people see our boys are more capable than they really are. When they boys don’t live up to expectations, it’s easy for people to lay blame elsewhere, like on us as parents.
  • We continue to encounter challenges, like having one of our boys experience a seizure in the last few months. More trips to specialists, multiple explanations of medical history, and unfortunately a lack of bedside manner.

Sometimes it’s hard to know how much to share. As I read what I’ve written, it sounds very negative. All I’ve written is true and often difficult. However, there are many celebrations as well. As parents of children who have special needs, we have learned to celebrate even the smallest victory. When we see a contented smile, that makes the hard things worthwhile. When we hear a boy chuckle about something he’s reading, it puts a smile on our face. There’s nothing like the acceptance and love these special children give.


2015 Writers’ Blog Hop Week 3 – My favourite character

Grade 7
Picture from Young Pilot September 1980

Thirty four years later I can still picture him: my grade 7 teacher, Mr. Arthur Freeman. (The picture above was taken while I sat in his classroom.) He taught junior high for decades at Prairie Bible Institute. When I met him, his silver-grey hair masked his quick whit, keen mind, and ready sense of humour. His piercing blue eyes often clouded with tears as he implored us to learn from his mistakes. He believed in discipline and structure, but the virtue of love pervaded everything he did.

He often told stories to break down walls and build relationship. Stories of his early years; stories of raising his family; stories of how he and his wife prayed, believing God would turn the hearts of rebellious sons; stories of students coming back years later to make things right. Along with lessons of history and grammar, we learned the lessons of life. Mr. Freeman not only challenged us to memorize 100 verses and recite them with no mistakes, but he also did it himself. While we were allowed to recite individually with him, he recited in front of the class, allowing us to correct him.

Mr. Freeman not only taught us; he mentored us. This mentorship did not end when we walked out the door of his classroom. For at least ten years afterward he was my teacher, I received a bookmark and personal note from him on my birthday. I’ve heard from others that he did the same thing for them, and am assuming he sent those birthday greetings to every student he had in his class. If you do the math, that action alone speaks volumes.

I’m grateful for the amazing legacy he left for those of us who had the privilege of learning with him.

Did you have a teacher or someone else who mentored you? I’d love to hear about that person.

 


2015 Writers' Blog Hop

 

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Redefining Disability Week 4 – Where should the emphasis be: medical treatment, life skills, community integration or all three?

Disability Treatment

This week we are asked to consider where the emphasis should be for people dealing with what I like to call special abilities. (You can read my thoughts about the term “disability” here.)

I preface my answer with a question of my own: What is the specific issue we are dealing with? Some people have a medical diagnosis, others have a psychological diagnosis, and others intentionally pursue no diagnosis at all. In my mind, the type of diagnosis may affect the emphasis or treatment. For some, the focus will need to be entirely on medical treatment due to the severity of the medical condition. For others, there is nothing the medical community can do, so the focus will be on life skills and perhaps community integration.

We focused heavily on medical treatment for the first few years. Our van racked up thousands of kilometers as we drove to Edmonton (a 2 1/2 hour trip one way) an average of twice a month and also attended speech therapy and physiotherapy appointments a half hour away. However, now we only need to go to a few check-ups every year and the focus has switched to teaching life skills and getting our children involved in our local community. Life skills started with very basic concepts like how to eat. It took one of our twins six months of hand-over-hand feeding before he was able to scoop his food into a spoon and feed himself. His brother struggled with sensitivity to textures and needed yogurt to help him learn to eat crunchy and lumpy food. It’s probably a good thing we couldn’t see into the future. Hours and hours of teaching resulted in progress, very slow progress,  but it has been steady. One of our boys still needs help pouring milk from a jug without spilling it. Another one still has toileting accidents both at home and at school. All our boys are all still learning to cut their own food. All three are able to dress themselves, but they need daily reminders to put on clean clothes. [I’m told this happens with “normal” kids too :)]

Integration into the community continues to be a challenge. Since we live in a small community, there are not many specialized services available. The boys were able to attend clubs when they were younger because their “differences” weren’t as obvious. Now that they are teenagers who only function at the level of 5-7 year-olds, they are not included in community groups without an adult present. After many years of attending summer camp as a family, we decided to send the boys independently. With a trip out to camp to sort out some initial problems, all three boys were able to last 5 out of 7 days. However, we were asked to pick them up early and informed we need to be prepared to attend with them if they come again. We also attempted to register a family team for community curling (two adults and two boys with special abilities). My husband attended the meeting, sharing very openly what our plans were, and no concerns were raised. However, later that week we received a phone call informing us our boys would not be able to play. Apparently there was a concern that our team wouldn’t be competitive enough.

We are grateful for several people who go the extra mile to make sure our boys experience some of the learning opportunities others take for granted. Each day is a new adventure – some discouraging and others amazing.

It’s your turn. How would you answer this week’s question?


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.