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

IMG_1640

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.


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.


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

IMG_1634

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?

 


 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.


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.


Redefining Disability Week 3: Experiences with Medical Treatment/Therapy

Disability and medical

Our experiences with medical treatment and therapy have been varied. I would say the “human” factor makes the biggest difference. Some doctors and therapists detach themselves and only dispense medicine and knowledge. Others genuinely care about those they are treating. They laugh with you and cry with you and cheer when there is progress. When one of these individuals moves on, you go through a grieving process. Here’s a summary of our experiences:

  • The first pediatrician who saw our twins said they would never walk, talk, or feed themselves. Perhaps he was merely trying to prepare people for the worst case scenario? Thankfully his prediction proved to be false.
  • The pediatrician who became our family pediatrician told us he wasn’t sure what the twins were capable of, but he committed to being with us each step of the way. He not only provided information, but he also gave helpful referrals and filled out copious amounts of paperwork to ensure they received necessary services.
  • Our pediatric ophthalmologist is a gem. He used sound effects and animated stuffies to help with examinations. He took his time and always made sure our questions were answered before he said goodbye. He cautioned us to be careful about making appointments in the winter, knowing that we traveled a few hours to see him. When he retired, he let us know and made sure someone else was there to take care of us.
  • The first speech therapist we were referred to knew less than we did about how to help our boys. We were told he could help us with the feeding issues one of our twins experienced. The best thing he did was admit he had no clue how to help us.
  • After enduring many speech therapy sessions that were a waste of time, we finally found someone who did more than diagnose problems. She taught us how to play with purpose by getting down on the floor with our twins and building a relationship with them. She not only told us what to do, but explained the reason behind it.
  • It took many phone calls and conversations before I located an occupational therapist who was willing to travel to us. He was honest about the rules which most people played by, but told us he would help in whatever area he could. He only did assessments when they were required for funding or some other useful purpose. Otherwise, he spent his time watching, listening, joking with the boys, and offering a professional sounding board for our family. He also made himself available for many phone calls and e-mails. To this day I know that I can ask for his opinion. I know he’s there for us.
  • My first encounters with special education were not positive. I discovered a system that was more about rules and money than about meeting the needs of unique individuals. Thankfully, I met other parents with more experience who helped me learn the ropes. (I chose to serve on our local school board for six years because I believed I could make a difference for other children and their families.) We also worked with some very caring teachers and educational assistants. People who were willing to go beyond the call of duty to make sure needs were met.

I’m thankful for the many amazing professionals we’ve interacted with on our journey. It truly does take a community to raise a child, especially when the child has unique needs.

What do you look for when you need medical intervention or therapy? What have your experiences been like?


 

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.


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

 

 

Redefining Disability2

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.

redefining-disability1


Redefining Disability Week 1

 

redefining-disability1

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.

 

Redefining Disability 1

My first up close and personal introduction to disability came sixteen years ago with the birth of my amazing niece, S. Due to complications at birth, she lives with Cerebral Palsy. She uses a computerized communication system similar to PECS, and has also learned how to send and receive text messages. She is dependent on help for all of her daily needs, but she now owns a motorized wheelchair she can control with movements of her head, and uses it whenever she can.

Her parents describe her as a disabled person with an able-bodied mind. Nothing is too challenging or difficult for her to at least try. She is a vivacious person who is limited only by her uncooperative body. If she can find a way to do something, she will.

Twelve years ago twin boys began educating me about the very personal challenges of special needs children and their families. L1 and L2 were born at 27 weeks gestation and spent the first four months of their lives in a neo-natal unit. A nurse who worked there at the time informed me the nurses took only four hour shifts with them because their needs required so much care. The doctors did not expect them to live. We met the boys months later when they were placed with us. We were told they had global developmental delays:

  • Crawled at 18 months
  • Learned to feed themselves at 24 months
  • First steps at 27 months
  • First words at 4 years of age

Several months after we adopted the boys, we learned they also have Trisomy 15. The first pediatrician who saw the twins predicted they would never be able to walk, talk, or feed themselves. We are grateful they have achieved all of those skills and more. However, we find we still have to work hard to advocate for their needs to be met.

L1 is very friendly and outspoken (even blurting out answers in church) and loves anything to do with animals. He constantly tells me I’m the best Mom in the whole world. L2 tends to be more of a loner, but is a real tease who loves to push his brother’s buttons until he gets a reaction. L2’s passion is vehicles – he knows all the makes and models, whether they are 2-wheel drive, 4-wheel drive, or all-wheel drive, etc. I’ve learned more about vehicles in the last few years than many guys 🙂

When the twins were five, we were able to adopt their brother. J also has Trisomy 15, but has fewer obvious challenges. His abilities are scattered, so sometimes people think he is capable of more than he is, which leads to frustration on both sides. He is passionate about hockey and has an amazing ability to remember facts.

Our youngest daughter was born with moderate hearing loss and is extremely near-sighted. A heart condition was diagnosed, but disappeared within the first year of her life. D is full of spunk, but very shy. She loves to help both Mom and Dad.