God Speaks Through Special Needs

“Long ago God spoke in many different ways to our fathers through the prophets, in visions, dreams, and even face to face, telling them little by little about his plans.” (Hebrews 1:1, TLB)

The prompt for our June post is a timely one for me. I am going to go as far as to say through this prompt God has spoken to me. A few days ago I was reviewing my blog, Scarred Joy, and decided to refocus it. The only thing is, I wasn’t sure what this refocus would be. I knew whatever direction the blog was to take it would retain my tagline of “touched by grief, held by hope.” The blog would still not shy away from the painful side of life.

Over the past few years my family has undergone life changing and significant experiences. This includes the death of my parents and my wife’s mother, the passing of five grandbabies due to pregnancy loss and the birth of six more grandchildren including two labeled by society as “special needs.”

My daughter and her husband have three children and the two children termed, “special needs” are part of their family. The lives of “special needs” families have a soft spot in my heart. Families with children who are perhaps not considered “typical,” face lifestyles that also are not typical. They are those who walk through life often misunderstood and not always welcomed by the typical world.

As grandparents my wife and I are part of the special needs world of our daughter and son in law. We have set ourselves apart, so to speak, from the typical world of grandparents. We have our times of grief and tears, yet the joy our “special needs” grandchildren hug us with is a gift beyond words. Such gifts remind us of God’s love. He sees beyond our “special needs” and loves us still.

 

The world special needs families live in is an emotional and multi-faceted one. The emotions are raw at times. This is the rawness the typical world of families is most often unaware. Day to day living for many special needs families may unexpectedly change. Plans may have to be altered as caring for a child takes precedence due to some unforeseen emergency.

As I write this blog post, my plan for my Scarred Joy blog is to include stories etc. of families and individuals who live with “special needs.” We may often think of “special needs” as primarily referring to children and other people living with such challenges as autism, cerebral palsy, Down syndrome, etc. A family having experienced the death of a child may also be considered as having special needs.

In using the term “special needs” I am cognizant it applies to people at any age or circumstance. A woman, who is now a widow or a man grieving the death of his wife, may have special needs. I also think of such things as people with acquired injuries or a terminal cancer resigning them to live with a special need.

Since becoming a grandfather a number of years ago I have taken on a greater love and view of life.  Far from being perfect and whole, life is fragile and in a sense enigmatic. As I look through my grandfather filter I see not all of life is black and white, right or wrong, good or bad. Life just is and it includes mystery!

I especially dedicate the Scarred Joy blog to grandparents who may be all too familiar with special needs. I believe grandparents have a unique bond and role to live out if they are part of family where special needs are “normal.”

https://scarredjoy.ca/

Finding Humour in Tough Situations - Ruth L. Snyder

Luke, wearing his grad suit and giving us a thumbs up

Our seventeen-year-old son graduated in June. It was a wonderful day of celebration—his first Paediatric report stated that Luke would never be able to walk, talk, or feed himself. The day of grad, Luke pranced proudly down the aisle, waving at everyone, a broad smile on his face. One of his classmates bribed him not to talk during the ceremony—he loves to talk and spouts out information non-stop. At the banquet, Luke gave us a thumbs up as he walked in. Then he made sure his plate was heaped with his favourite Ukrainian food, and he ate it all. Luke and his twin brother have developmental delays, but they bring a lot of joy and laughter to our family.

Luke was very proud of his suit, so I asked him if he wanted to wear it to church the next day.
"Yes!"
I washed his shirt and wiped down the suit. Sunday morning I knocked on his door and handed his suit to him.
"Thanks, Mom"
"You're welcome, Luke. We'll have breakfast in a few minutes, okay?"
"Yup!"
I went downstairs and prepared breakfast, set the table, and then called everyone. A couple minutes later, everyone was at the table except for Luke. (Usually he's the first one around when there's food involved.)
I marched back upstairs, and stopped short. Luke was sitting on his bed, both feet protruding—from the sleeves of his suit jacket. He was stuck! His feet would not go forward or backward, even with me holding onto the sleeves.
At that moment, several thoughts (and emotions) went through my mind simultaneously:

• How in the world did he get his feet through the sleeves? And why did he put both feet in? (I felt bewildered and sorry for Luke)
• Was this the end of his brand new suit that he had only worn once? (I felt frustrated and angry)
• Everyone was downstairs waiting for breakfast, and there was no quick fix! (I felt rushed because I'm the church pianist and we needed to leave for church in 20 minutes.)

I took a deep breath. "Okay, Luke. I'll help you, but I need to go downstairs for a minute. I'll be right back."

He nodded, looking for reassurance. 

At that point, I couldn't find the energy to smile, but I squeezed his hand.

Downstairs I grabbed a pair of scissors. "Go ahead with breakfast. Luke and I will be a while."

My husband nodded, waiting for an explanation.

"I'll tell you later."

Back upstairs, I took a fresh look at the situation. Luke's heels were both through the sleeves and by this time he was sweating. The actual sleeves were loose; it was the lining that was tight around his ankles. Little by little, I sliced the lining until Luke was able to pull one foot out, then the other.

"How about if you just wear your vest this morning?"

Luke nodded.

I inspected the jacket sleeves. "I'll sew the lining, and next time you wear your suit, you'll be able to wear the jacket too." 

"Thanks, Mom!" Luke gave me a big hug and a slobbery kiss.

Now that this event is in the past, I can laugh. It's another story to add to the "Remember when" collection. Parenting kids who have special needs can be a roller-coaster ride—I say that every day is a new adventure. I'm thankful that God gives strength, and humour, to see us through.

Are you able to find humour in tough situations? I look forward to hearing about it in the comments below.

Ruth L. Snyder lives with her husband and five children in northeastern Alberta. Grace, Luke, Levi, Jayson, and Dorothy have all taught them that being "specially-abled" brings unique opportunities to learn and serve. https://ruthlsnyder.com/blog

Athletic wear doesn't make one an Athlete! by Jocelyn Faire

Most of the Olympics have passed me by, the summer has been busy, this August long weekend I hosted three sisters, a niece and her three children. My niece used my smart TV to play DVDs for her children … and somehow the settings were not returned to my normal.  And I feel not so smart. Aaaagh … I would come in last for the Olympic technology challenge. 

But what an epic adventure of laughter, and bubbles, and parachute men dropped over the balcony, more laughter and great food for our motley crew between my house and the Canmore, Alberta folk festival. And in it all I was reminded of the Olympic sized challenges that my niece and her ten year old daughter face each day of life.

(In the winner's circle!)

Multitudes of prayers had been spoken for Maya prior to her birth, when her parents were informed that their daughter had a rare syndrome, and would be born with numerous life challenging difficulties. She has had at least 40 surgeries, the first one before she was a week old. She has spent months of her life in hospital, and even now the doctors are waiting for her to grow stronger in order for her scoliosis to be corrected. Many of us have wondered if the Psalm 139 verses about being fearfully and wonderfully knit in her mother's womb have missed the mark. And yet according to her Grandmother, Maya is a girl with a special connection to Jesus. When I had the privilege to tuck the three little ones into bed, Maya asked if she could read from her bible. My heart breaks for this girl who is becoming increasingly aware of how different she is than the others. She will never run any competitive races. She has never had a normal bowel movement, as the colostomy bag takes care of that business for her. In the playground while her 4 year old brother ran up and down the boards three times, Maya carefully placed one hand and then a foot down in order to ascend. I cheered heartily as she reached the top. 

We speak of all the hard work and determination that goes into producing an Olympic athlete. We stand in awe giving credit to those who have laboured intensely. I stood in awe of this little girl and her family carving out some sense of normal in a precarious health balance.

What was heart warming was to hear Maya speak to herself in the mirror, while wearing her Epic T-shirt. She would say "I feel epic" over and over, making all of us smile. It's a great thing to see that when we repeat these words, we do become more epic.  Epic is defined as "heroic or grand in scale or character."  As we speak Olympic sized dreams into place, we become more of what we speak.  May we all feel epic, and help those around us to achieve a sense of epic in their own lives.


Love one another with brotherly affection. Outdo one another in showing honour Romans 12:10(ESV)

How are you? - Ruth L. Snyder

"Fill your paper with the breathings of your heart." -William Wordsworth

It started at the breakfast table. After we read about what qualities God looks for in a person and how we should look beyond people's actions and appearances.

"You're dumb. I don't like you."

"I don't like you either."

"Mom, Levi's bugging me."

I sighed. My husband was already at work. "Are you guys being kind to one another?"

They gave me crooked grins and shook their heads. It was quiet for a few milliseconds before they were at each other,  again.

I took a deep breath and prayed for wisdom. The day before Steve Green's Hide Em in Your Heart had calmed them all. I put on the music. Today it didn't seem to make a difference for them, but it calmed me. I repeated expectations and separated two of the boys.

Time to write in agendas. I opened one up and read:

"Levi wore boots to school. Please make sure he wears shoes."

A thought flitted through my head. "I'd like to see her get five kids ready for school in the morning." I quell the urge to react.

"Sorry for the boots. By the time I realized he was wearing them it was too late to get him to change before the bus came."

"Mom, can I have an egg?"

Dorothy had already eaten cereal. She must have been hungry this morning, because usually she didn't want to eat more than a few mouthfuls.

"Sure." I fried an egg, then continued on to the next journal.

"Luke, did you make your lunch?" No answer. I found him in his room, playing. "Is your lunch in your backpack?"

He shook his head.

"Go get it done and then you can come play."

"My stomach doesn't feel good." It was Dorothy. The egg sat in her bowl, untouched.

"Go get dressed and then see how you feel."

Journal writing completed. Two lunches out of four made.

"What do you want for lunch today, Levi? There's some pizza in the fridge."

He nodded, then smiled when I handed him a slice.

I glanced at the clock. Ten minutes until the kids needed to go to the bus. Dorothy was still upstairs. I found her with her clothes heaped in front of her, still in her pyjamas.

"Need some help?"

She nodded. We worked together.

"Okay, go brush your hair and then we'll get your hearing aids in."

We both walked down the stairs. She went to brush her hair. I grabbed her hearing aids and placed them on the table. Levi's hearing aids were still sitting there. I found him heading out to see our dog, Olaf. I handed him the hearing aids and went to check on Dorothy. Across the house I heard Levi's hearing aids squealing. I finished with Dorothy, then went back to Levi. His hearing aids sat in the windowsill with both earmolds separated from the hearing aids.

"I don't want to wear my hearing aids today."

"Is there a problem with them?"

"I just don't want to wear them."

Jayson came up behind me. "I have the leash for Olaf."

"Okay, but I need to check on Dorothy first."

He followed me like a puppy. I didn't want him to follow me, but he wasn't doing anything wrong. I bit my tongue.

Dorothy had her hair brushed. We worked together on her lunch. Time to go.

Jayson and I went outside. Olaf wagged his tail and bounced around, happy to see us. It took me a couple minutes to get him to settle enough to get the leash on and unhook his chain. We walked down the driveway, stopping a few times for me to talk to Olaf and settle him. He seemed more energetic than normal.

We finally made it down the driveway. Luke had rubber boots on.

"What happened to your shoes?"

"I couldn't find them."

Great. I can already see the note I'm going to receive in the agenda.

Then, Levi came into view. He had boots on too - his older sister's boots. She's not around this morning, but I can imagine what she'd be saying if she were. Argh!

"Levi, you can't wear those boots. They're Grace's. Let's go change."

Levi, Olaf and I returned to the house. Poor Olaf didn't understand why he was being put back on his chain. He yipped.

I took Levi back into the house where we replaced the boots and he put on his shoes. I also found Luke's shoes. We walked back down the driveway, arriving just in time for Levi to get on the bus with his siblings. I placed a smile on my face and waved as it left.

Whew!

About twenty minutes later my husband found me at my desk.

"How are you?"

"This morning was challenging, but I'm okay." If he only knew, I thought.

(Maybe I'll get him to read this sometime.)

Our Family Legacy Story - Ruth L. Snyder

In 1998, we heard about nineteen-year-old Mary, a single parent who was unsure of her ability to provide for her baby. Five months later, after figuring there was no possibility of adopting that particular baby, we sat down to fill out an adoption application with a private agency.  That night we received a phone call asking if we were still interested in adopting Mary's baby.  Four frantic days later, we brought our eldest daughter home.

Four years later, twin boys were placed with us by Child & Family Services.  (The boys were born at 27 weeks gestation, weighing less than two pounds each.  The fact they survived is a miracle.) Our 18-month-old twins introduced 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 noticed about our boys was their silence – no babbling, no chatter.  We were told they had “global developmental delays.”  After six months of scooping with a spoon, our hand over his - every day, several times a day - we celebrated while Luke actually fed himself.  At twenty-seven months, we cheered while Levi took his first wobbly step.  A few months later, he was able to climb up on a chair by himself and stand. We clapped, momentarily forgetting that Levi’s balance still needed help.  He stood for mere seconds, grinning from ear to ear, before taking a terrible tumble to the floor.  He landed on his head with glasses protruding at an odd angle, and blood gushing. We cringed as the doctor interrogated us. We learned to sign, using Signing Exact English, so the twins had a means of communicating with us.  Progress was excruciatingly slow.  Our boys, at age four, finally voiced 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 had other plans for them!

Two years later, Jayson joined our family.  Although Jayson is a full sibling to Luke and Levi, he had fewer obvious challenges.  However, parenting skills that worked with our other children were not nearly as effective with Jayson. We learned to be very creative in dealing with challenging behaviors.

Several years later, we received another phone call informing us we had been matched with twins (a three-year-old boy and girl). However, the adoption fell through before we even met the children, due to circumstances beyond our control. 

Life settled into a comfortable routine.  It seemed our family was complete. I decided to take on a part-time position with our local school board.  A month later, we were informed our boys had a new baby sister and were asked to consider adopting her. Our file was still open from the “match” that fell through, making it possible for us to become foster parents in a matter of days.  We drove to the hospital to meet our new little daughter.  Although we had four children, we had never cared for a newborn before, let alone one who had heart problems.  The hospital staff patiently showed us what we needed to know to care for her. A year later she was taken off her heart medication because there was no trace of any heart problems.

The next summer my husband and four older children were anticipating a carefree afternoon ride on horses in the backwoods at camp when a tanker truck zoomed over a double yellow line and rammed into the van in which they were riding. The van rolled and came to a screeching halt in the ditch. (My husband describes seeing bodies flop around like clothes in a washing machine. One of the ambulance attendants asked our daughter how many people died in the accident.) We're thankful the van took a left turn, avoiding most of the impact, thankful a young fellow passenger scooted from the corner that was hit to the middle seat because the seat belt wouldn't hook, and thankful the worst injury was a broken leg (to the fellow passenger). I'll never forget my family stumbling through the doorway of the cabin, dusty, bloody, and tearful, but alive.

Seven months later I received a phone call informing me my husband was in emergency at the local hospital. He had taken a snowmobile he fixed, out for a test drive and the next thing he knew he was lying on the snow several meters away from the crumpled snowmobile. Somehow he was able to start the machine and drive it back to the shop where he worked. (That was the last time the snowmobile started.) His coworker rushed him to the hospital where he was put in a neck brace and immobilized. Although he wasn't wearing a helmet, he walked away with minor injuries and a few major bruises.

As you can see, we have many things for which to praise the Lord. Will you join us in praising Him for His goodness and His wonderful works in our family?

 
Ruth L. Snyder and her husband, Kendall, have five 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. Connect with Ruth at http://ruthlsnyder.com.

Sufficient Grace by Ruth L. Snyder

He giveth more grace as our burdens grow greater,
He sendeth more strength as our labors increase;
To added afflictions He addeth His mercy,
To multiplied trials He multiplies peace.

When we have exhausted our store of endurance,
When our strength has failed ere the day is half done,
When we reach the end of our hoarded resources
Our Father’s full giving is only begun.

Fear not that thy need shall exceed His provision,
Our God ever yearns His resources to share;
Lean hard on the arm everlasting, availing;
The Father both thee and thy load will upbear.

His love has no limits, His grace has no measure,
His power no boundary known unto men;
For out of His infinite riches in Jesus
He giveth, and giveth, and giveth again.

-Annie J. Flint (Public Domain)

     I was driving one of my sons to Edmonton for some medical tests. The dark pre-dawn sky mirrored my emotions. My son had two long days of testing ahead of him. I wondered if he would cooperate and do his best. Behaviour issues and inconsistent achievement at school had convinced me to look for help for him. Would the people administering the tests be understanding and helpful? Or would my son and I be judged?

Ruth L. Snyder

     The soothing words of Annie Flint’s hymn streamed out of the stereo and poured over my troubled spirit. The sun began its ascent to proclaim the beginning of a glorious new day. It was as if God Himself wrapped me in His loving arms and whispered, “Peace. Be Still.” I reveled in His presence and understood that no matter what happened, He would be with me.

     There are times in life when we have to cling to the truth of God’s Word. All around us we see darkness. It feels like light doesn’t even exist. But God is there. The storms of life will come and go. But Jesus is the same – yesterday, today and forever. When we can’t go on, He will carry us. His grace is sufficient - always. (2 Cor. 12:9)

Check out Ruth’s education blog at http://www.trusteesnyder.blogspot.com/