Parenting: Getting through the tough days (Parenting Blog Hop Week 1)

Parenting Blog Hop

 

Question: What do you find most challenging about parenting? 

“Start children off on the way they should go, and even when they are old they will not turn from it.” (Proverbs 22:6 NIV)

For me, the most challenging part of parenting is adjusting my expectations, training, and discipline to the uniqueness of each of my children.

I have five children ages seven to seventeen; Each child is different. One child craves hugs and responds better to life if the hug quotient is full. Another child doesn’t want hugs, but responds well when I take the time to sit and listen. One child has a sensitive spirit and rarely needs discipline. Another child constantly challenges authority.

It takes time to get to know my children. The way my children enjoy spending time with me is also different. My youngest just wants to be with me and often offers to help with whatever I’m doing. My next child loves to play games. Another son enjoys riding in a vehicle with me – the destination is unimportant. His brother still comes and sits beside me, or even on my lap, gives me hugs, and compliments me often. My eldest child prefers to communicate with text messages.

Some of my children also have special needs. This means that I can’t expect my fourteen year-old to act like most fourteen year-olds. Sometimes a younger sibling things I’m being unfair because I expect more from the younger one than the older one.

Parents have the challenging job of knowing our children and then teaching and training them accordingly. I’m thankful I don’t have to tackle parenting alone. My children have a hard-working Dad. We all have a Heavenly Father who stands ready to give us His wisdom if we will only ask:

“If any of you lackswisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you.” (James 1:5 NIV)

Question: What helps you get through the tough days?

Several things help me when I face challenging days as a parent:

  • Prayer – God is never too busy to hear my desperate pleas for help.
  • Reading God’s Word, the Bible – There are many encouraging passages I return to again and again. Some of my favourites are Psalm 37, Psalm 1, Isaiah 41, and Ephesians 6
  • Perspective – Talking to parents who’ve gone through similar situations and have survived is a great encouragement to me.
  • Sufficient Sleep – It’s always easier for me to handle challenges when I get my sleep!
  • Healthy Food – I try to choose more fruits and vegetables rather than products with refined sugar. However, chocolate is still part of my diet – in moderation. 🙂
  • Respite – Sometimes I need a break from my children to clear my thinking and renew my perspective. I find an occasional break is good for both me and my children.
  • Confession – When I make a mistake as a parent, I’ve found things turn around quickly when I’m willing to “‘fess up.”

What about you? What do you find most challenging as a parent? What helps you get through the tough days?


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

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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.


Favourite Quotes from The Art of Work by Jeff Goins

Art of Work

In January I received an invitation to join the launch team for The Art of Work by Jeff Goins. Although the official launch date of the book is tomorrow, March 24, 2015, everyone on the launch team received a copy of the book a couple of months ago. In this book, Jeff shares from his personal experience as well as from the experiences of others about how to discover what you are meant to do with your life.

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I found myself nodding my head and sighing with relief while I read the book. Jeff tells it like it is: finding our calling is often a confusing and messy path. Many times we have to work for a living while we pursue our passion on the side. If we’re not careful, we can become so obsessed with our passion that we shut out our family and friends – the very people we need to keep us grounded:

Every story of success is, in fact, a story of community.”

“As you strive to achieve your life’s work, be careful of at what costs you chase it. It will be easy to resent those closest to you, to make your biggest supporters into your worst enemies. To hoard your work away from the rest of life. You may be tempted to see every relationship not as a lifeline, but as a competing force, something to be mistrusted. And in doing this, you may destroy the very things that could save you.”

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Jeff addresses many issues, like commitment, apprenticeship, and learning to embrace failure as a friend:

The risk of not committing is greater than the cost of making the wrong choice. Because when you fail, you learn.”

“Failure is a friend dressed up like an enemy.”

“Will you wallow in regret, wondering why such a thing has befallen you, or will you choose to act, making the most of your obstacle, and allow it to evolve into an opportunity?”

“Successful people and organizations don’t succeed in spite of failure; they succeed because of it.”

 

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I especially appreciate Jeff’s reminders to those of us who are passionate about the arts:

 This is an important distinction when considering your life’s work. Most people won’t continue doing something they aren’t passionate about, especially when it gets hard. Putting an activity through painful practice is a great way to determine your direction in life. If you can do something when it’s not fun, even when you’re exhausted and bored and want to give up, then it just might be your calling.”

“Humility is a prerequisite for epiphany. Without it, your dream will be short-lived and self-centered.”

“Answering a call will sometimes feel that way. It won’t make sense and may even open you up to rejection and criticism, but in your heart you will know it’s right.”

“We are caretakers of our vocations, stewards entrusted with a vision that is bigger than us. Our responsibility is not to hoard our gifts but to use them in challenging ways so that others can benefit.”

The Art of Work is a book everyone could benefit from, because we all want to know that our lives will count for something:

Success isn’t so much what you do with your life; it’s what you leave behind. Which may be what a calling is all about: leaving a legacy that matters.”

Get your Free Audio Book + Bonuses by purchasing the book from any retailer!

 

 


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 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.


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 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?

 


 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 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.