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 3: Experiences with Medical Treatment/Therapy

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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.


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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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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Free Christmas Short Story!

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This month I would like to give you a Christmas short story called Hope for Jimmy. All you need to do to receive this story is fill in the form below with your name, e-mail address, and tell me what you’d like me to blog about in the coming year.

I hope this story will remind you that there are people who need our help at Christmas time. Ask God how He wants you to reach out and give hope to someone this Christmas.

Matthew 25:31-40 (NIV)

31 “When the Son of Man comes in his glory, and all the angels with him, he will sit on his glorious throne. 32 All the nations will be gathered before him, and he will separate the people one from another as a shepherd separates the sheep from the goats. 33 He will put the sheep on his right and the goats on his left.

34 “Then the King will say to those on his right, ‘Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. 35 For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, 36 I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.’

37 “Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? 38 When did we see you a stranger and invite you in, or needing clothes and clothe you? 39 When did we see you sick or in prison and go to visit you?’

40 “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’

(From The Bible Gateway)

Merry Christmas!

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