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.


Pregnancy and Infant Loss Remembrance Day

Image shared on Facebook by www.countthekicks.org.uk
Image shared on Facebook by www.countthekicks.org.uk

This image brought tears to my eyes. 1998 is a long time ago in many ways, but the memories are still there. Many people who know me, don’t know. Miscarriage is a private grief many deal with, but few talk about.

My experience led to me write and enter the following story in a writing competition in 2005. The piece was subsequently published by Testimony Magazine. I share it here with hopes it will minister to others who grieve and help others understand how profound the grief may be for people who experience miscarriage.

 

Gifts from a Loving God

Leaves crackle under our feet as we walk. Lois, my mentor and friend, smiles at me. I relish this rare opportunity to spend time with her. “Infertility is a gift from God. I never thought I’d say that,” Lois confesses.

I swallow hard to bury my protest. “Are you crazy,” my heart screams. “How can anything this painful be a gift?”

The only career I want is motherhood. My desire haunts me, like a mirage in a dry, dusty desert. First, an infertility specialist informs my husband and me it is impossible for us to have children of our own. Then, against all odds, we conceive, only to face the crushing disappointment of miscarriage. Conception continues to elude us. Now what? Do we relinquish our dream of parenting children? Do we investigate other options, like adoption or foster care?

Since we have no children, I have the gift of time – time to volunteer in the local school and catering club, time to pray, time to grow. Over time, I learn to navigate the waves of grief as they splash over me – some gentle, others that leave me gasping and drowning in grief. Mother’s Day, the birth of a baby, interacting with nieces and nephews, watching parents play with their children are all bittersweet. Slowly I learn to receive and give the gift of compassion.

A year later, we begin our challenging journey on the road called adoption. In January, we hear about nineteen-year-old Mary and her baby. Mary is unsure she can provide for her baby and may be looking for an adoptive family. In May, after anxiously waiting for news that never comes, we sit down to fill out an adoption application with a private agency. That night the phone rings! “Hi, this is Sue. Mary asked me to phone and see if you are still interested in adopting her baby.” Four frantic days later, we bring home our daughter. For us, adoption is a gift of joy and celebration, but for a birth Mom, it is a gift of sorrow and sacrifice. Our daughter, Grace (unmerited favor) Victoria (victorious one), reminds us often of God’s loving gifts.

Four years later, we marvel again at God’s gifts – twin boys placed with us by Child & Family Services for adoption. (The boys were born at 27 weeks gestation, weighing less than two pounds each. The fact they are even alive is a miracle.) As we meet the foster parents and compare notes, we are in awe of God’s leading. The foster parents love Jesus Christ and rejoice that the boys will grow up in a Christian family!

Our 18-month-old twins introduce us to a completely new world – special needs. Only those who walk in these shoes know the special joys, challenges, and gifts these children provide. The first thing we notice about our boys is their silence – no babbling, no chatter. We learn they have “global developmental delays.” After six months of scooping with a spoon, our hand over his – every day, several times a day – we celebrate while Luke actually feeds himself. At twenty-seven months, we cheer while Levi takes his first wobbly step. A few months later, he is able to climb up on a chair by himself and stand. We clap, momentarily forgetting that Levi’s balance still needs help. He stands for mere seconds, grinning from ear to ear, before taking a terrible tumble to the floor. He lands on his head with glasses protruding at an odd angle, and blood gushing.  We cringe as the doctor interrogates us. “Who was looking after your son when this happened,” she inquires while stitching Levi’s face. We learn to sign, using Signing Exact English, so the twins have a means of communicating with us. Progress is excruciatingly slow. Imagine our joy when we hear our boys, at age four, actually voice the words, “Mom” and “Dad” for the first time! The pediatrician who first saw our twins said they would never walk, talk, or feed themselves. We are thankful God has other plans for them!

Two years later, Jayson joins our family. Although Jayson is a full sibling to Luke and Levi, he has fewer obvious challenges. However, more often than not, we grit our teeth in frustration, quelling the temptation to yell. Jayson stands looking up at us, his brown eyes large. We search for any sign of sorrow, repentance, or desire to please. It isn’t there. He defies us, again. Then he lies to us, repeatedly, despite the fact that his siblings are providing a running commentary of what has taken place. Parenting skills that have worked with our other children are not nearly as effective with Jayson. God uses Jayson to give us the gifts of humility and total reliance on God.

Several years later, we receive another phone call. “I have good news! You’ve been matched with twins (a three-year-old boy and girl) for adoption.” However, the adoption falls through before we even meet the children, due to circumstances beyond our control. We grieve silently, unable to share details with our families because of legal issues.

Life settles into a comfortable routine. It seems our family is complete. We are thankful for the gift of children God has given. Now that the children are all in school, I decide to take on a part-time position with the local school board. A month later, the phone rings. “Hi, I have some news for you. The boys you adopted have a new baby sister. Would you consider adopting her if she becomes available?”

It does not take long for us to answer, “Yes!” Our file is still open from the “match” that fell through. This makes it possible for us to become foster parents in a matter of days. We drive to the hospital to meet our new little daughter. Although we are excited, we are also nervous. We have never cared for a newborn infant before, let alone one who has heart problems. The staff at the hospital is very gracious. We are patiently shown what we need to know to care for her. “She’s lucky to have you,” one of the nurses comments. “You know, some of the kids in here end up staying for up to six months because we have nowhere to send them. There are so many, we cannot spend the time we would like with them. Sometimes we have to sedate them, just so they stop crying!”

My eyes fill with tears. “God, have mercy on our nation,” I whisper as I cuddle our newest daughter close. She snuggles into the crook of my arm and falls asleep. Her face is a picture of peace and contentment.

There are still many unknowns before us. Each day brings new challenges, some very unexpected. Our stability in the midst of this change is Jesus Christ, our rock, our Savior, our guide.

Romans 8:28 says, “And we know that all things work together for good to them that love God, to them who are the called according to his purpose.” I can now honestly agree with Lois, “Infertility is a gift from God.” Without this gift, we may not have received many of the other gifts God has chosen to give us on our adoption journey. We are thankful for God’s blessings: past, present and future. Although we may not always understand, we can choose to accept every gift God sends our way and trust Him to work them all together for good.

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Must Read: Fellowship of the Burning Heart

I’ve decided that I will read some classics in 2015. Fellowship of the Burning Heart came highly recommended, so I purchased a copy. It sat on my table until a few days ago when I picked it up and started reading it.

Fellowship of the Burning Heart is a collection of 10 sermons by A.W. Tozer. The collection is edited by James L. Snyder. He has done a great job of keeping the integrity of the sermons while making them a joy to read. In his introduction, James L. Snyder says:

“When you finish reading these ten sermons, you will come away with a reverence for God and an appetite for the sterling spirituality he (Tozer) advocates in his preaching. One thing is certain: you will never be the same after exposing yourself to ‘Platform Tozer.’ I know I’m not.”

The book includes a short biography of A.W. Tozer written by Snyder, some pictures of A.W. Tozer, a study guide, and the ten sermons:

  1. How to Pray for Revival
  2. In Everything by Prayer
  3. Believing Prayer
  4. Prepare by Prayer
  5. He Must Increase
  6. Hearing is a Divine Art
  7. Manifest Presence – Something Else
  8. Presence Everywhere
  9. Three Faithful Wounds
  10. The Way to Paradise

Here are some quotes to whet your appetite:

“Never underestimate the power of prayer. And remember that without it, you cannot win. With it, you cannot lose.”

“The Bible always tells the facts…It tells you that you’ll have eternal life now and lots of trouble and hardships and thorns and cross-bearing in this world and glory in the world to come and eternity with God. If you’re man enough to put up with the thorns and the crosses and the hardships and the hostilities, you can have the crown.”

“God is God. He made Heaven and Earth and holds the world in His hand and measures the dust of the earth in the balance and the sky; He spreads out like a mantle. The great God Almighty is not your servant; you’re His servant. He’s your Father; you’re His child. He sitteth in the heaven and you’re on Earth. The angels veil their faces before the God who cannot lie.”

“Von Hugel said about Pierre Gure, the great saint, ‘The reason Pierre Gure’s writings so incessantly and habitually bless and help so many people is that Pierre Gure refuses – absolutely refuses to write anything until he is blessed himself. He wants the oil of God upon him, flowing, or he won’t touch a pen,’ I think that’s beautiful.”

“Now remember, you can have all your plans you want and you can get the help of all the advertisers and all the modern mechanical gadgets, but when it is all done, you’ll fall short unless first God is glorified in the midst of His Church.”

This book will challenge you, encourage you, and force you to examine the Scriptures.

Tozer Sermons


My Prayer for 2015

Prayer for 2015

Happy New Year! As we step into 2015, here’s my prayer:

Heavenly Father,
Thank you for the gift of a new year. Thank you that you know what each day will hold and You will guide us, strengthen us, and enable us.

Help us to be still and know that You are God (Psalm 46:10).
Help us to listen for Your voice, instead of being distracted by the turbulence around us.
Help us to feed on Your Word so that we may serve from a full heart and mind.
Help us to cast our anxieties on You, knowing that You care for us (I Peter 5:7).
Help us to be obedient to Your calling on our lives, no matter how seemingly insignificant.
Help us to glorify You in all we think, do, and say.

In Jesus Name,

Amen

Several days ago, I signed up for Kristen Ekstein’s Kindlein30 Challenge. Yesterday, I learned a new technique (from the challenge) called “Brain Dump”. Grab a piece of paper and a pen, set the timer for 10 minutes, and write down everything that comes to mind.

Kristen explained that often our creative ideas get “stuck” behind our to do lists and other things that are swirling in our brains. I tried it and this morning I was delighted with the ideas that spontaneously came. I now know what I want to focus on as a writer this year: a series of books that combine many of the topics I jotted down yesterday and showcase my photography while focusing people on Scripture. It’s so obvious now!

My first book will be 31 Days of Hope with pictures of winter beauty. I’m excited to get started. Stay tuned for further details!


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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Pitfalls on the trail to healthy living & Five Minute Friday

Pitfalls

As some of you know, I’ve been working on changing some of my habits. I’m thankful for the success I’ve had – becoming more active and losing some weight. However, I still have a ways to go. I was doing very well until summer hit. I lost 25 pounds and was exercising regularly. Then I reverted back to some of my bad habits and gained 15 pounds back. Now I’m almost back to my pre-summer weight.

As I thought about why I struggled over the summer, I came up with eight pitfalls that tend to trip me up:

Stress

If I’m not careful, my healthy living plan disappears when I experience stress. We all live with stress, but there are times when life throws it’s worst at us. If we don’t choose otherwise, we can get tripped up.

Possible Solution: Watch for signs of stress and acknowledge it. Humor is a great stress reliever. Put together movies, jokes, etc. that make you laugh and have them ready when you need them.

Pre-packaged Food

We live in a frenetic world. It’s easy to rely on frozen pizza or mac and cheese instead of spending the time to cook healthy meals. I’m not saying we should never eat these foods, but they should be the exception. Recently I was reminded that sometimes we need to retrain our taste buds. We crave what we eat.

Possible Solution: Make sure you keep your kitchen stocked with the ingredients you need to cook homemade meals. If you need some inspiration, try out a new recipe. (I’ve started collecting new recipes using Pinterest.) Retrain your taste buds to enjoy food that is good for you.

Not enough Sleep

This is a contentious issue for some people. I don’t think there is a magic number for this, but if you are waking up tired on a regular basis you’re probably not getting enough sleep. I find that when I’m tired, I tend to eat more. Not a good plan!

Possible Solution: Look at your schedule and see if there are things you need to intentionally cut out. Be more conscious of when you are tired. Every once in a while allow yourself to go to bed early.

Emotional Eating

This is a big stumbling block for me, and I wasn’t even aware of it until lately. When I’m stressed, or lonely, or sad or … I can easily fall into the trap of eating to try to make myself feel better. The problem is that food can’t satisfy us emotionally.

Possible Solution: I’ve found it helps to wait for ten minutes or so when I want to snack. This gives me time to evaluate whether I’m actually hungry or if I’m struggling emotionally. I’ve also found time with friends, doing something I enjoy, and spending time reading my Bible help me deal with the real issues.

Lack of Vegetables

Have you ever stopped to think about how many servings of vegetables you eat? (Check out this visual of the recommended amount of fruits and vegetables we should be eating each day.) Vegetables have many benefits including providing vitamins and minerals, adding fiber, and satisfying us without adding a lot of calories.

Possible Solution: For me, the first step was becoming aware of how few vegetables I was eating. Then I had to make sure my grocery list included a variety of vegetables. Now I’m trying to teach myself to reach for vegetables when I want a snack.

Grabbing what’s Quick

This is something most of us do – grab something that’s quick. We live busy lives. Sometimes we don’t have time to make a meal, so we grab something on the run. Usually what we grab is not the best choice because it’s usually something sweet, or salty, or loaded with calories.

Possible Solution: Have healthy food on hand, like vegetables and fruit or things you need to make yourself a wrap. If you need to eat out, do your homework ahead of time and pick some healthy options. Most restaurants and fast food places have nutrition guides available.

Lack of Accountability

If I don’t make a conscious effort to pay attention to what I eat, it’s easy for me to get tripped up and fall back into my bad habits (like eating desserts regularly). Accountability helps us pay attention to what we’re doing, provides support, and gets us through the rough times we’ll all have.

Possible Solution: Find an accountability partner who will check in with you regularly. If you find that difficult, try tracking your eating and exercise in a journal or with an app. (My Fitness Pal is available on the web or as an App on iTunes)

Inactivity

I don’t know about you, but I find that I spend a lot of time at my desk. Unless I consciously make myself move, I sit. Our bodies are made to move. Exercise improves our memory, posture, and confidence. It also helps relieve stress, sleep better, and have more energy. (Check out Top Ten Reasons to Exercise Regularly.)

Possible Solution: I tend to find excuses not to exercise, so I had to find something I could do regularly at home. A treadmill and some DVDs help get me moving. Listening to inspiring music or podcasts while I exercise helps too.

What about you? What pitfalls have you encountered and how do you avoid them?

Dear

Dear Reader,

Thank you for taking the time to stop by my blog and read. I hope you found encouragement, humor, and some helpful information.

I don’t take you for granted. We live in a frenetic world. You could choose to use your time for many things other than visiting my website.

Thank you for taking time to leave a comment. This lets me know if content is helpful and engaging.

I hope that this Advent and Christmas season you will take time to reflect and spend time with those who are dear to you. Take time to thank God for the many blessings in your life.

I also invite you to read and share what I’ve written – both on my blog and in e-book or printed form (Note: Helping Hands Press is offering 30% off until December 18th. Enter code: THANKYOU):

  • Cecile’s Christmas Miracle
  • Shadows and Sunshine
  • Life Lessons
  • Uplifting Devotionals for Parents

If you have suggestions for blog topics, let me know.

Thanks for being you!

Five Minute Friday provides an opportunity to write about a one word prompt for five minutes and then link in to Kate’s blog. Come join the fun 🙂


Name Conference: Marriages that Last

Lasting Marriage

Yesterday at church we celebrated two marriages which have stood the test of time. One couple has been married for 53 years. The other couple celebrated 63 years of marriage.

Have you ever wondered why some marriages fail while others thrive?

Here’s some more information that Bill and Pam Farrel shared about lasting marriages at the NAME Marriage Conference in November.

Seven stages most couples go through

  1. Newlywed
  2. Couple begins family
  3. Children enter school
  4. Children enter teen years
  5. Children enter adulthood
  6. Retirement Years
  7. Aging/Loss of spouse

“A hormone called PEA is released when you decide to marry someone – you’re actually addicted to this person. This lasts 18-24 months. When it’s gone, it’s gone. However, Oxytocin can be produced over and over by laughing together, by sharing mutually satisfying experiences, and sex.”

  • Women don’t divide their love, it multiplies!
  • Treat your spouse like company.
  • Sometimes it’s not just a spiritual problem, maybe we need a nap!

Midlife transitions: Wife’s search for significance; Husband’s search for companionship

We experience:

  • Overstated emotions
  • Question: Who am I and why am I on the face of this globe?
  • Most vulnerable to an affair

Work through Crisis

Wise women will take the question to God

“I love you too much to let life pull us apart, so let’s set some date nights.”

Men: Superman syndrome

  • Men become aware of the expenses of life
  • Men can become so focused on providing for the family that they forget to build relationship with the family
  • Testosterone drops in mid-life
  • Health crisis that gets your attention
  • Mid-life is a transition like puberty; transition from productivity to wisdom. People need your wisdom!

 Questions couples should ask themselves:

  1. Who would be a great mentor couple for us?
  2. When’s a great time for a date night? (Hint for couples with young children: Thursday night toy box. Put together a special box of toys children can only have on Thursday night (or whatever night you have your date night). Children have to stay on their beds to play with their special toy box.)

Seasoned Sisters – a supportive group of women Pam gets together with regularly.

  • In construction “sistering” = putting 2×4’s together so they can bear more weight; we should be doing this for each other as women.
  • “Choosing Joy!” – a phrase Pam uses to remind herself that she can’t change the circumstances, but she can change her attitude.

Pray Scriptures over your family

Isaiah 30:8 The Lord longs to be good to you

REMEMBER!

  • “If couples can hang through this transition (midlife), life will right itself.”
  • God is good all the time! Hang on to that. Goodness is ahead. Stick together.
  • Write out a dream list of what you want to do in the second half of your life.
  • Number one trait of couple who last a lifetime – want a love that lasts a lifetime (Pure grit and determination)

“Remind each other: It’s not you, it’s not me, it’s just life!”

 


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