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?


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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 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.


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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 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.


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.


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?


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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.


Writer’s Blog Hop – Sample from Hope: Reflections to brighten the Dark Days of Life

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One of the major projects I’m working on this year is a series of Kindle books (31 Days of … Series). The first book I’m putting together is Hope: Reflections to brighten the Dark Days of Life. I’ve worked on the cover design and received feedback. Now I need to finalize which colour scheme I’m going with. Which cover do you prefer? Left or right? Or is there a different colour you think I should try for the main title? (Let me know in the comment section below.)

Below you’ll find Focus, one of the devotionals I’ll be including in the book. I’m also learning to make podcasts, so listen in if you prefer 🙂

NOTE: to see what other authors are working on, go to the blog hop.

Focus

By Ruth L. Snyder

It’s 8:03. The bus comes at 8:25. My daughter wants me to read a story to her and her brothers are looking at the latest Scholastic book order forms, trying to get my attention so they can tell me what they want to order. I want to tell them we’ll deal with the book order after school, except today’s the last day orders are being accepted. My daughter opens her book. I start reading. While she’s flipping to the next page I find one of the desired books and circle it on the order form. I read the next page. One son pushes his way closer so he can listen too. I read the next page then cut out the order form while the page is being flipped. This process continues until 8:11. The book is finished; the order forms are half filled out. It’s time to get jackets, backpacks, and mitts. I still need to add the order up, write a cheque, and write the book down on my daughter’s reading list.

“Get your jackets on. I’ll finish here.”

The children rush to the entryway. I add the order up, write a cheque, staple everything together, and write the book down on the reading list. I’ll clean up after the kids are on the bus.

I take the order and reading list to the entryway. Two boys are on their way out the door. My daughter is having trouble with her zipper. My other son is nowhere to be seen. I put the order and reading list in her backpack and help with the zipper. Then I go in search of my MIA son. He’s just coming out of his room.

“Hurry! It’s time to go.”

As I’m talking to him, a glimpse of the sky takes my breath away. The sunrise is beautiful. For over a week temperatures hovered in the minus thirty range. Today it’s warmer and the sky is showing evidence of the change in temperature. You know the saying: “Red in the morning, Shepherd’s warning.” I race to grab my camera and snap a picture. My daughter’s ready, and my son is close behind.

As we walk to the bus, my focus is on the beauty of the sunrise. The busyness of the morning rush is forgotten. I breathe deeply, smile at the antics of our Husky dog, Olaf, snap pictures, and pray with my children before they climb on the bus. After the bus leaves, I continue to snap pictures as the sun rises and colours change. I revel in the moment, knowing it will soon disappear and the hectic pace of life will be back, clawing and whining for attention.

Focus. We can choose our focus. We can allow all the ugly, dark, discouraging events we all face to drag us down. Or, we can instead focus on the glimpses of beauty that surround us.

In Matthew 14, we read about the disciples crossing a lake in the middle of the night. It was stormy. They had to work to keep the boat going in the right direction. Then, just before dawn, they saw something, someone, walking on water towards them. Some of them cried out in fear, thinking it was a ghost. Peter responded by calling out:

“Lord, if it’s you, tell me come to you on the water.” (verse 28)

Jesus tells him to come, so Peter gets out of the boat and walks on the water toward Jesus. Verse thirty tells us:

“But when he saw the wind, he was afraid and, beginning to sink, cried out, ‘Lord, save me!’”

Jesus reached out his hand and caught Peter, rebuking him for doubting, and helping him climb back into the boat.

I don’t know what you’re facing today, but Jesus does. He’s there for you: the same Jesus who spoke the world into existence.

Are we going to focus on our circumstances today? Or are we going to choose to focus on Jesus and trust Him?


Redefining Disability Week 2: How do you view the concept of disability?

 

 

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To be honest, the word disability irks me. I find it irritating that we use this word with its negative connotations to talk about fellow human beings who just happen to think, act, or look different than some of the rest of us.

As a parent of five beautiful children who all have some qualities which differ from the general population, I pursued diagnosis of “disability” to obtain access to the services my children need to be successful. I know other parents who have firmly rejected any sort of diagnosis. I don’t blame them. Sometimes the stigma attached to the label isn’t worth the dollars you are able to access with the label.

Why is it that we focus on the negative qualities of these individuals? Why can’t we focus on the benefits, the special abilities they have? Both of my daughters are extremely creative and artistic. Perhaps they wouldn’t have these qualities if they didn’t also have the other qualities that cause so much struggle and consternation some days. One of my sons is a gifted storyteller. Another son knows more about vehicles than 90 percent of adults. Memorizing facts is another gift.

Why is it that the general population is allowed to hide their weaknesses by focusing on their strengths, but the people who already struggle are forced to focus on their weaknesses, sometimes to the detriment of their passions and strengths?

I look forward to your comments and suggestions 🙂


One of the benefits I enjoy most about writing and blogging is meeting other people who share my passions. One of my blog hop participants is Rose B. Fischer. Last year she 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 will be answering one of her questions.

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