A Reluctant Caregiver

A Reluctant Caregiver

by | Nov 26, 2018 | Different Dream, Holidays, Special Needs Parenting

A Reluctant Caregiver

I’ve been a reluctant caregiver most of my life, but didn’t realize it was a problem until after the birth of our first child. He was medically fragile for the first four years of his life, but his special needs weren’t the cause of my reluctance. In truth, I rose to the challenge whenever a health crisis arose. But after his recovery from each surgery or hospital stay, when life returned to the norm of putting our baby’s daily needs above my desire for creative and intellectual pursuits, I became a reluctant caregiver.

I discovered I wasn’t a baby person.
Or a toddler person.
Not even a preschool person.

I loved our son and then our daughter fiercely from the day each one was born. But, I didn’t lay down the mantle of a reluctant caregiver until our children reached age 5 or so. Only then did caregiving cease to consist of marking time until they went down for naps or to bed for the night. Only then did our hours together become a fascinating time of introducing them to God’s fascinating creation.

I was ashamed of my reluctance.
I kept the secret buried deep.
I convinced myself that I’d outgrown it.
I almost forgot about it.

To read the rest of this post, visit the Key Ministry blog for special needs parents.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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Sensory Friendly Fourth of July Tips

Sensory Friendly Fourth of July Tips

by | Jun 21, 2018 | Different Dream, Holidays, Special Needs Parenting

Sensory Friendly Fourth of July Tips

Sensory friendly Fourth of July tips seem like a tall order to fill. But they are par for the course for Trish Shaeffer, mom of 3 boys with special needs and sensory issues. Today, she shares her best sensory friends Fourth of July strategies so you can implement them during your holiday celebration.

Fourth of July is almost here!

It’s time for backyard barbecues, fireworks, and swimming pools, with the smell of hot dogs and charcoal are in the air.

But what if you have a child with sensory issues? They make the holidays a little more challenging, but you can have fun by taking some of these sensory friendly Fourth of July tips with you as you go out on your Independence Day outing.

  • Prepare your child for the day, making sure your child knows what to expect. Explain that there will be a lot of people and noise.
  • If you child does not like loud noises, bring noise-canceling headphones, especially for viewing fireworks.
  • Bring favorite and familiar items like a blanket or stuffed animal when watching fireworks.
  • Remember pool safety and water safety. Children with autism may wander from your side and water may be a potential danger.
  • If your child cannot swim or does not like deeper water, try a Slip and Slide, to give your child a sensory input activity while keeping cool.
  • Need more sensory input or activities? Try bubbles or sand.
  • If you child won’t sit still for you to apply sunblock, try the spray kind. Make sure to read each product’s label for specific directions for proper use.
  • Bring a blanket or small tent and put it in the shade so your child can go there when he needs somewhere to go to cool down or decompress.
  • Make a getaway plan for when things get too much for your child. Don’t overdo it! Bow out of some engagements or outings with family as needed.

Hopefully these tips and tricks will help make your Fourth of July a more enjoyable one. You may be even able to sneak in some sensory play along the way. Have a safe and happy holiday!

 

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Trish Shaeffer is the mom of 3 active boys with special needs. She’s a peer supporter for Parent to Parent and volunteers with the United Cerebral Palsy Network, Special Olympics, and the United Way. She’s also an equine volunteer at Leg Up Farm. She’s married to her best friend and biggest supporter, Chris Shaeffer.

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Words Are Too Small for My Mother’s Love

Words Are Too Small for My Mother’s Love

by | May 10, 2018 | Different Dream, Holidays, Special Needs Parenting

Words Are Too Small for My Mother’s Love

“I love you,” I tell my mother at the end of every visit,
before bending to kiss her forehead.
“That goes without saying,” she might reply in return,
or “Reciprocated,” as she picks up her book as I leave.
But rarely, “I love you” in return.

Such words make her uncomfortable,
and hugs have always made her uneasy.
I have no memories of being tucked into bed with her whispering, “I love you,”
no memories of hugs and kisses when I woke in the morning.
But I have never doubted the love she has for her family.

It is fierce,
It is possessive,
It is unending,
It is sacrificial,
It is her purpose.

Love of family sent her back to teaching when her husband became ill.
Love of family is why she went back to college so she could earn more money.
Love of family made her fight for equal pay for women at a school board meeting.
Love of family is why she still refuses to get her hair done sometimes.
“I want that money to go to you kids,” she says by way of explanation.

So when she returns my profession of love with
“That goes without saying,” or “Reciprocated,” I never feel rejected.
Instead I look at my mother in her favorite red chair, wispy white hair flying,
I reflect on all she did for her family, all she still wants to do for us,
and I am grateful beyond measure for the love for her family she can’t express.

It is fierce,
It is possessive,
It is unending,
It is sacrificial,
It is her purpose.

Words are too small to describe her love,
too few to encompass all she did for her family,
too short to span the decades she labored,
too insubstantial for the burdens she bore,
too inadequate for a Mother’s Day card.

Perhaps, I thinks as I watch her set down the book she is reading
and turn her attention to a crossword puzzle,
this is why she shies away from “I love you.”
Her words can’t possibly hold the long lifetime of her actions.
So I say them for her again before I leave.

“I love you, Mom,”
and she looks up,
her faded blue eyes twinkling,
her smile wry and loving.
“I know, Jo,” she says and turns away, “I know.”

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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Loving and Forgiving our Mothers this Mother’s Day

Loving and Forgiving our Mothers this Mother’s Day

by | May 9, 2018 | Different Dream, Holidays, Special Needs Parenting

Loving and Forgiving our Mothers this Mother’s Day

Different Dream welcomes Heather Johnson, a new guest blogger, this week. Heather’s story about the importance of loving and forgiving our mothers is timely as Mother’s Day approaches, and it comes with a tissue warning, too.

“Happy Mother’s Day, Mom!” 

“You sent me flowers!  They’re gorgeous! But you told me you weren’t going to send flowers because you bought me a garden bench!

“Yeah, I know!  But you’ve always said that flowers should be given to the living, not to the dead.”

We both laughed and began talking about her move from Ohio to Wisconsin where I’ve lived with my family. Within two weeks, Mom and I would be sitting on her new bench in the yard of her new house. Just two more weeks. Our hearts were full of anticipation.

The next morning, the phone rang. 

“Heather, it’s Bonnie.” My sister delivered the nightmarish news. “Mom’s dead.”

“What?”  I screamed my disbelief. My knees gave out. Collapsing on the top stair, I felt unable to breathe. My chest hurt from my wildly pounding heart. I wailed, “No!  No!  NO!”

As I sat rocking and sobbing with unspeakable grief, my sister gave me the facts.

Mom began feeling ill around 7 PM—nausea, vomiting, pain in her neck and shoulder, sweating. An ambulance transported her to the closest hospital. The emergency room doctor misdiagnosed her with the flu and sent her home. Just a few hours later, Mom died in her bed.

The new life I wanted with my mother shattered. She would never live in her new Wisconsin home. We would never sit on her new garden bench. She would never see her grandkids grow up. So many stolen dreams. But there was one dream that came true while she lived:  a warm relationship between the two of us which wasn’t always so. 

Mom had struggled with undiagnosed depression and anxiety while she raised her family. She was often short-tempered and bossy, spiteful and mean. She hurt me deeply too many times to count. In my 20’s, I wondered what would become of us. I didn’t know how to forgive such deep wounding until I began dealing with my own depression and anxiety. My own breakdown was the best thing that happened to me in terms of learning to love and forgive my mother. 

Over the years, I learned to set limits on Mom’s inappropriate behavior while also loving her unconditionally, at least in action. Slowly, both of our hearts softened toward each other. In the last five years of Mom’s life, we enjoyed the warm relationship we both had always wanted. It took time and effort. But isn’t loving and being loved back worth the work and the wait? Every Mother’s Day, I answer my own question.

Yes, Mom was worth the work and the wait.

So am I. So are you.

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Heather MacLaren Johnson lives near Wisconsin’s Lake Michigan shore with her husband of 25 years, 3 horses, 2 dogs, 2 barn cats, and a fish. She earned her B.S. in Education and her doctorate in Clinical Psychology before adopting 3 amazing kids from Russia, all now in their 20’s, all with life-long challenges stemming from prenatal exposure to alcohol (FASD). She is completing a memoir about her mother/daughter journey through hidden disabilities and mental illness.

Heather’s essay about learning to ride horses at age 44 is included in Leslie Leyland Field’s The Wonder Years: 40 Women Over 40 on Aging, Faith, Beauty, and Strength (Kregel Publications). She has published devotional pieces for The Seed Company (Wycliffe Bible Translators Affiliate) You can learn more about Heather at her website www.truelifewithgod.com.

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How Will You Feel Loved this Valentine’s Day?

How Will You Feel Loved this Valentine’s Day?

by | Feb 8, 2018 | Different Dream, Holidays, Special Needs Parenting

How Will You Feel Loved this Valentine’s Day?

How will you feel loved this Valentine’s Day? That’s a question I’ve been asking myself often as I listen to couples raising kids with special needs talk about their relationships during interviews for Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities. The other question that comes to mind is equally important: How will my spouse feel loved this Valentine’s Day?

Dr. Gary Chapman, identifies the 5 love languages as gifts, acts of service, quality time, words of affirmation, and physical touch. Many years ago, Chapman’s 5 love languages quiz confirmed what I already knew. Acts of service and words of affirmation are the ways I receive love. Next comes quality time. But gifts and physical touch mean very little to me. Conversely, the best way to show love to my husband is through physical touch, followed closely by quality time. Acts of service weighs in at number 3. Words of affirmation and gifts mean next to nothing to him.

If only, my husband and I have often told one another, we had known about the 5 love languages early in our marriage. Those were the years when caring for our son with special needs comprised the bulk of every day. We had little time to work on our marriage as we fought to keep our baby alive.

When we did try to communicate love to each other, our efforts fell flat. He would hug me or try to hold my hand, which meant a great deal to him but very little to me. I tried to be helpful and praise him for what he did for our family, but my efforts barely penetrated his consciousness.

If we had known about the 5 love languages in those days when we were constantly exhausted and stressed, we could have used that information to energize one another. He could have garnered my undying love by clearing the table and doing the dishes or folding the laundry. I could have made him fee cherished and loved with a kiss and a hug before he went to work and a back rub while he held our baby in the evening.

Over the years, we’ve learned to speak each other’s love language. So this Valentine’s Day won’t involve exchanging expensive gifts because that language means little to either of us. Instead, he’ll speak my language by taking me out to dinner so I don’t have to cook that night. I’ll speak his language by holding his hand on the way to the restaurant and snuggling in bed before we drift off to sleep.

What we didn’t know then, I want you to know now while you’re in the thick of caring for your child. You are exhausted and stressed, and you need every available tool to safeguard your marriage this Valentine’s Day. So if you haven’t yet determined your love language or your spouse’s, I encourage you and your spouse to take this online quiz right away.

Once you know your love language and your spouse’s, you can find a creative way to express love to one another clearly and effectively. And once you do that, you will both feel loved in ways you never have before even while you’re engrossed in caregiving and parenting. What are you waiting for? Take the quiz and make this Valentine’s Day the best ever for you, for your spouse, and for your children.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon. The first book in her cozy mystery series, See Jane Run!, features people with disabilities and will be released in June of 2022.

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Sharing Special Needs Love this Valentine’s Day

Sharing Special Needs Love this Valentine’s Day

by | Feb 7, 2018 | Different Dream, Holidays, Special Needs Parenting

Sharing Special Needs Love this Valentine’s Day

Sharing special needs love is often a one way street where others support caregiving families by encouraging and giving to them. Trish Shaeffer, mom to sons with special needs, suggests ways families can reciprocate by showing appreciation and giving back this Valentine’s Day.

As Valentine’s Day approaches, we sometimes forget what the holiday is really about thanks to the big markets out there for candy and cards and more. It can be overwhelming, trying to decide what to get and who to get a box of candy or card for.

Yet Valentine’s Day should be a day when we slow down by sharing special needs love and appreciate all who are there for us. Whether your encourager is a friend, boyfriend, girlfriend, classmate, teacher, parent, husband, wife, or child–you don’t need to spend tons of money or buy a dozen roses to show that you appreciate what they do. All it takes is a hug, a shared day together, a handmade card, a homemade meal, or a thoughtful favor done for someone.

One small gesture is all you need. Showing people you care is contagious and will continue to spread the special needs love you’ve received. Even better, you are showing your children how to show love, acceptance and helping those in need.

I challenge you this Valentine’s Day to spread the love by doing something small that could make a huge impact on someone’s life. Here are some more simple ideas to spread the love:

  • Volunteer to help spread the special needs love through delivering Meals on Wheels or spending time at a senior center with those that may not have many visitors.
  • Pay for the coffee of someone behind you in line.
  • Volunteer at an animal shelter or donate some old towels or blankets for the animals to have something to sleep with.
  • Bake some cookies for your neighbor.
  • Hand make a card for your child or significant other.
  • Make dinner together as a family.
  • Donate items to a local homeless shelter.
  • Volunteer to cuddle NICU babies at the hospital.
  • Donate items to the Ronald McDonald Family Room. Coloring books, snacks, and  coffee are a few good suggestions.
  • Give someone a hug or high five.

If you have more ideas about sharing special needs love on Valentine’s Day or all year round, leave a comment below.

 

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Trish Shaeffer mom of 3 active boys, a 9-year-old and 5-year-old twins who were born 2 months early and have special needs. She’s a peer supporter for Parent to Parent and volunteers with the United Cerebral Palsy Network, Special Olympics, and the United Way. She’s also an equine volunteer at Leg Up Farm. She’s married to her best friend and biggest supporter, Chris Shaeffer.

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