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 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?


 

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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 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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Redefining Disability Week 1

 

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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.


2015 Writers' Blog Hop

Blog Hops in 2015: Come join the fun!

Thank you to those who gave input into the type of blog hop you would be interested in participating in. I’ve taken the feedback I received and compiled it, deciding to run several shorter blog hops in 2015. Look over the topics and let me know which one(s) you will participate in by sending me an e-mail. I also need to know which day works best for everyone to post – leave a comment below. (Most posts will be made the same day, but the link will be live for a week.)

General Writers’ Blog HopWriters Blog Hop
#1 Writing Goals – share what you’re planning to work on this year (Week of Jan 5th)
#2 Writing sample – share a sample from your current Work in Progress (Week of Jan 19)
#3 Favourite character – this can be a real person or a character from one of your fiction stories (Week of Feb 2)
#4 Lifelong learner – Writers need to be continuously learning. What did you learn in 2014 that helped make you a better writer? (Week of Feb 16)

Social Media Blog HopSocial Media Blog Hop
#1 Favourite Social Media Site – Tell us where 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)

Parenting Blog HopParenting Blog Hop
#1 What do you find most challenging about parenting? What helps you get through the tough days?(Week of May 4)
#2 What parenting tip would you give to new parents? (Week of May 18)
#3 Share a family tradition with us (Week of June 8)
#4 Share your favourite holiday destination and/or how you make long family trips more enjoyable (Week of June 22)

Bloggers’ Blog HopBloggers Blog Hop
#1 Share your goals/mission statement for your blog and why/when you started blogging (Week of July 6)
#2 How do you engage your readers? (Week of July 20)
#3 Where do you find your blog graphics? (Share your favourite sources/apps) (Week of Aug 3)
#4 Share some blogs you guest post on and why (Week of Aug 17)

Christian Writers’ Blog HopChristian Writers Blog Hop
#1 Share your testimony with us (Week of Sept 7)
#2 Tell us about your favourite writing conference and how it improved your writing (Week of Sep 21)
#3 Share how your world view affects your writing (Week of Oct 5)
#4 Share a book which impacted your spiritual life and writing (Week of Oct 19)

Writers’ Marketing Blog HopMarketing Blog Hop
#1 Share your most recent published book/article with us (Week of Nov 2)
#2 Share a marketing idea that has worked well for you (Week of Nov 16)
#3 What advice would you give to someone who is wanting to market a book or article? (Week of Nov 30)
#4 Which websites/groups/social media sites have you found helpful? In what ways? (Week of Dec 14)

If you have any concerns or questions, let me know. I’m looking forward to learning with you in 2015 🙂


Adoption Blog Tour: My fears, hopes and dreams for our children

Adoptive Parents

Adoption is a challenging journey. (You can read our family legacy story here.) An adoptive family experiences many joys and sorrows. Here are some things I celebrate as an adoptive parent:

  • The day we brought each of our children home
  • Hearing, “I love you!”
  • Holding adoption orders in my hand and knowing these are legally our children
  • Hearing, “Your daughter has your eyes.”
  • Watching our twins, who were never supposed to walk, talk, or feed themselves, run with carefree abandon and gulp down ever increasing amounts of food.
  • Hearing, “You’re the best cook in the whole world!”
  • Coming home and being met at the door with hugs, smiles, and “You’re home!”
  • Walking into a room and seeing all of my children reading by themselves.
  • Hearing, “Your son knows his Bible well.”

Like any parent, I also have fears, hopes, and dreams for my children.

I Fear:

  • Our children floundering with their identity.
  • Not having the answers or ability to meet our children’s unique needs.
  • People being distracted or distressed by our children’s special needs and refusing to take the time to get to know who they really are as people.
  • The future, wondering if our children have the skills and ability to be independent.
  • People taking advantage of our children.
  • What will happen to our children when we are no longer able to care for them?

I Hope:

  • Our children will find security and significance in a personal relationship with God.
  • Our children will lead lives that are privately happy and publicly useful.
  • Our children will know that we love them no matter what.
  • Our children will persevere through the difficulties they face.
  • Our children will have the support and encouragement they need.
  • Others will treat our children with respect.

I Dream:

  • That our children will be able to set goals that are meaningful to them and achieve them.
  • That others will be able to look beyond our children’s special needs and see the special gifts they bring to the world.
  • That our children will be able to have healthy relationships with their birth families.
  • That our community and the larger world will make a place for our children where they are accepted, nurtured, and productive.
  • That there will always be a safe place for our children.

Adoptive and foster parents need support and encouragement. I’m thankful for:

  • Extended family members who love and accept our children
  • Teachers who go the extra mile to include our children
  • Specialists who listen and give helpful advice
  • A church family who celebrates our children’s unique gifts and abilities
  • Friends who pray for me and listen when I just need to vent

What are your fears, hopes, and dreams for your children? Are they similar to or different than mine?

NOTE: For the month of December, I’m giving away a FREE copy of a Christmas short story – Hope for Jimmy, to everyone who follows my blog. (Fill in the form below)

Ruth L. Snyder and her husband, Kendall, have five adopted children ages six to seventeen. Besides looking after her family, Ruth enjoys teaching Music for Young Children and writing. She currently serves as the editor for In the Loop, a quarterly newsletter for foster, adoptive, and kinship families in northeastern Alberta, Canada. (Read more of their adoption journey: Our Family Legacy Story.)

Adoption Blog Tour

 

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Parenting: Motivating with Rewards

In August at my Music for Young Children professional development session, one of the presenters shared that she doesn’t offer practice incentives to her students. Instead she challenges parents to talk to their children and figure out what will motivate them. I remembered this piece of advice a few weeks later when I sat down to help my own six-year-old daughter practice piano. It seemed like she resisted practicing. There was always something more interesting to do; practicing was hard work.

A week or so later I bought a ceramic tea set for my daughter to take to a friend’s birthday party. My daughter told me she wanted one just like it. I knew that my daughter could save her allowance and purchase her own tea set. However, I decided to offer the tea set to her as a practice incentive. At first I thought we would track her practice for a month or so and then give her the tea set when she practiced five or more days for at least four weeks. However, I ended up with a different plan.

I purchased the tea set at Toys-R-Us. My daughter was with me when I purchased it, so I explained my plan. Every week she practiced five or more days, I would give her one piece of her tea set. She happily agreed, and it has made a huge difference in her practicing. Since we started this arrangement five weeks ago, she only had one week where she didn’t earn a piece from the tea set. (Sometimes children want to know if we will stick to our guns!) We still have at least seven more pieces of the tea set waiting to be earned.

Although I would rather have my daughter intrinsically motivated, she seems to need some extrinsic motivation right now. She does enjoy music, but piano lessons are my choice not hers. I’m hopeful that once I help her develop consistent practice habits, she’ll enjoy the thrill of music making and the pleasure it brings to herself and others enough to be self-motivated.

 

Tea Set