Birthdays and Disabilities Are Like Cake and Ice Cream

Birthdays and Disabilities Are Like Cake and Ice Cream

by | Jul 27, 2020 | Different Dream, Holidays

Birthdays and Disabilities Are Like Cake and Ice Cream

Birthdays and disabilities are like cake and ice cream for my family. We can’t have one without the other. For many years I didn’t appreciate this truth. Now I do. Today is my birthday again, and I’ll welcome joy and sorrow to my party. They’ve put in appearances before.

I have no doubt that they’ll do it again.

They first showed up the year I turned either two or three. I’m not sure which, but it was the first birthday I remember. My mom made a chocolate birthday cake with chocolate frosting. She decorated it with the outline of a clown holding a bunch of balloons. The strings were thinly piped icing and the balloons were round, sour ball candies. Then she covered the cake with foil, put it and me in the car, and drove to where my dad had been hospitalized since his diagnosis multiple sclerosis. We celebrated with him and a little girl he’d befriended. She was a few years older than me and lay on a stretcher throughout the party. She liked the cake and the candies, too.

Two things about that day remain vivid in my mind–her joyful wave when the nurse wheeled her away when the party ended, and the sorrow in Dad’s eyes as he waved back.

Joy and sorrow visited on my twenty-sixth birthday, too. My two-month-old son was in a hospital 750 miles away from home, and I was with him. He was recovering from an emergency operation to correct complications related to the life saving surgery he’d undergone at birth. I sat next to our two-month-old’s crib and watched his chest rise and fall.

To read the rest of this post, visit Key Ministry’s blog for parents.

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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.

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My Other Child

My Other Child

by | Jul 21, 2020 | Different Dream, Holidays

My Other Child

My other child is the one rarely mentioned on this blog. Like other typical siblings of kids with special needs and disabilities, her story is the one less told.

Less told, but no less important.
Less dramatic, but no less precious.
Less worrisome, but no less life-changing.
Less demanding, but no less worthy of our attention.

Like every typical sibling of a child with disabilities and special needs, she deserves her time in the sun. Today, on her birthday, I’d like you to meet my other child, the one rarely mentioned here, who was born six years after her big brother.

I could tell you about her childhood was different than his or how their personalities are polar opposites. But that would make her share the spotlight with him, and she’s had to do that all her life. Instead, I’m going to show to you her great and lovely heart.

When she was 5, my other child told her dad she wanted to ask Jesus to live inside her because she couldn’t be good all by herself. She told him she loved him more than Leppy her favorite stuffed animal, and if she ever started loving Leppy more than him, Jesus should take him away. Her own children play with Leppy now.

When she was 10 and my heart was broken, she brought me her favorite paint-by-number picture and a little butterfly sculpture she’d made. “I hope they make you feel better,” she said. They didn’t, but she did.

When she was 15, my other child and a friend who also loved to sew spent hours and days creating costumes for high school theater productions. Despite time and distance, their friendship and love for sewing remains strong to this day.

When she was 21, my other child and her husband stood shoeless as they recited their wedding vows. They wanted to acknowledge the gravity of their commitment to one another by standing barefoot on holy ground like Moses before God in the burning bush. They take those vows just as seriously now.

When she was 25, my other child persevered through a long, drug-free labor before welcoming her first child into the world. She marshaled her formidable stubbornness to give her baby a strong start in life. She makes sacrifices to grow his strength every day.

When she was 27, my other child and her young family uprooted their lives and moved to the town where my husband and I live. Throughout her growing up years, she’d watched my mother care for my disabled father. She and her husband want to be with us when we get to that stage of life.

When she was 29, my other child became a mom again. She and her husband brought their new baby from the hospital to our shared home. She navigated grandparent advice with grace and kindness.

Today my other child turns 32. We will celebrate with her, her husband, and their 2 children because of the sacrifice they made on our behalf. We will eat what she wants for supper with cherry pie for dessert. We will tell stories about when she was little. We will listen as she describes her plans for expanding and improving her vegetable garden. We will cheer as she gives an update about how her book coaching business is growing.

Above all, we will be grateful for the gift her old soul has been to our family. And I will say a prayer of thanksgiving for my other child, the one rarely mentioned on this blog.

How I wish you all could meet her.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly 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 both parent and daughter of loved ones with special needs and disabilities, as well as a former educator who worked with children for 25 years. She’s written several books about caregiving, special needs parenting, and childhood PTSD, including the recently released Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilties, which she co-authored with Dr. Gary Chapman. She speaks internationally about caregiving and parenting children with special needs and blogs at www.DifferentDream.com. Jolene and her husband live in central Iowa.

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Three Themes Common to Special Needs Dads

Three Themes Common to Special Needs Dads

by | Jun 18, 2020 | Different Dream, Holidays

Three Themes Common to Special Needs Dads

Three themes common to special needs dads resonate with guest blogger, Mark Arnold, as Father’s Day approaches. He’s here with straight talk about how to think differently about each of them.

Whenever I talk to dads in a group or on their own long enough, at least one of these three themes common to special needs dads will emerge. Themes that fill them with sadness, regret, pain, grief.

#1: I Have To Be The Strong One

Dads who identify their role in the family as being the strong one try to hold it all together. It’s a very manly approach, convincing ourselves that we’ve got it all together. By inference, it makes the Mum the weak one who is falling apart and struggling most.

My experience is that this couldn’t be further from the truth. Scratch beneath the tough exterior of dads, get them to start opening up about how they feel, get them sharing with other dads about their child, their worries, the things they find hard, and they are as vulnerable and hurting as anyone else.

Dads need to learn from mums to be willing to share feelings, to be vulnerable, to seek out and find dads on a similar journey. There is great truth in the saying that it’s okay to not be okay. There is strength in seeking help and support. Talking is powerful It helps us and those we are talking with too.

#2: I Need to Be in Control and Fix This

Dads often respond to their child being diagnosed with a special need or disability by looking for ways to stay in control, to manage this, to fix this. We look for an answer that is going to make it all go away. This can’t happen. Often without realizing it, dads are stuck in a cycle of grief that is as real for a parent of a child diagnosed with a special need or disability as it is for a bereaved parent. We grieve for what is lost, both the life we dreamed of for our child, and perhaps even the life we dreamed of for ourselves.

The cycle of grief includes denial. Then anger, that can be toxic and lead to broader relationship issues. Bargaining follows when many dads look for ways to negotiate a way out of this. Those with a faith might plead with God, “if only you’ll fix this, I’ll be a good person, I’ll go to church.” Depression arrives when a dad realizes there isn’t a way to do a deal on this, and or fix it. Finally, dads come to acceptance, a place of understanding and appreciation of our and our child’s new life emerges. All is not dark. There is much to look forward to, as Welcome to Holland expresses.

#3: I Should Leave

In so many cases, too many cases, dads leave. Maybe they have struggled to cope with being strong when inside they are broken. Maybe they have been overwhelmed by the cycle of grief and are stuck in one of its stages. Maybe they have struggled with their child taking up all of the attention of their partner, which led them to seek comfort elsewhere. Maybe something else caused this family to reach the breaking point.

Sadly, over half of families with a child who has a disability experience significant relationship difficulties and breakups. Not every relationship is fixable. Sometimes the diagnosis for a child is merely the final pressure that opens cracks that were there all along. But it doesn’t always have to end this way. If dads and mums are willing to understand their feelings, to appreciate what is going on, to talk about them and seek support and help, some relationships can be turned around.
Seek help before it’s too late. Your children need their dad. Your partner needs someone to share the load, be there for the family, raise your children, and to build a good life with.

I’m as broken and struggling as the next dad. I have bad days, I behave like an idiot. But I’ve learned I don’t have to stay that way. I hope you can join me on that journey. Thanks for taking the first step by reading this. 

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly 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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Mark Arnold is the Additional Needs Ministry Director at Urban Saints, a leading national Christian children’s and youth organization. He is co-founder of the Additional Needs Alliance, a national and international advocate for children and young people with additional needs or disabilities. Mark is a Churches for All and Living Fully Network partner, a member of the Council for Disabled Children and the European Disability Network. He writes an additional needs column for Premier Youth and Children’s Work (YCW) magazine and blogs at The Additional Needs Blogfather. He is father to James, who has autism spectrum condition, associated learning disability, and epilepsy. To find out more about how Mark’s work can help you, contact him at: marnold@urbansaints.org or @Mark_J_Arnold.

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The Coronavirus Mother’s Day Blues

The Coronavirus Mother’s Day Blues

by | May 7, 2020 | Different Dream, Holidays

The Coronavirus Mother’s Day Blues

The coronavirus Mother’s Day blues have been dragging me down. As the holiday draws closer, the music gets louder and the lyrics get whinier.

Don’t get me wrong.

These blues aren’t for me. My husband and I live in a multi-generational household with my daughter, my son-in-law, and our two grandchildren. So our Mother’s Day celebration will have more than enough hugs and love to go around.

I’m singing the coronavirus Mother’s Day blues for my 91-year-old mother.

Her residential home has been closed to visitors since March 12. My siblings and I call her daily. We drive over for window visits every week. The staff coordinates FaceTime visits. Even so, she’s becoming more sluggish and less engaged by the day. It stinks.

The lyrics to the song go something like this.

Mom shouldn’t be eating dinner alone this Sunday.
She should be with us.

A Mother’s Day window visit isn’t enough.
She should be with us.

Culver’s frozen custard will cheer her up but
She should be with us.

I’ll spare you the remaining verses. You can thank me later. Let’s get back to the subject of this blog post–my 91-year-old mom who had the rug yanked out from under her when she was 29 and kept going. 

This nasty virus wasn’t around when her husband became ill in the late 1950s, but multiple sclerosis was. His diagnosis was my parents’ personal COVID-19 moment. Our family and our future were changed by illness in many of the ways people now fear the coronavirus will change theirs. The challenges my parents faced were hard, scary, unfair, and traumatizing. 

Thanks to Mom and her singular determination, our family emerged scarred and stronger.

In deference to the spirit of who Mom once was, I’ll sing her praises instead of the blues by passing along something she said in an interview for the newsletter at her care facility.

“What was the luckiest day of your life?” the interviewer asked.

“The day I met my husband,” she replied.

“That was a nice thing to say,” I said after reading the interview.

“I miss him. I’ve been lonely a long time.” Her tired blue eyes met mine and she added, “He loved you and your sister so much. When I got pregnant again, he said he would be happy to have another girl. You kids made him so happy.”

She’s 91.
Her memory is failing.
She is so lonely.
She misses Dad so much.

Even so, the message she gave me from my father wrapped me in the blanket of his love. Her words are the reason the coronavirus Mother’s Day blues haunt me.

Mom gave me so much, and she’s still giving. But the gift I have to give her this Mother’s Day is the one she needs the most and wants the least.

It’s the gift of not being there, and it breaks my heart.

Happy Mother’s Day, Mom. I love you.

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the monthly 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 both parent and daughter of loved ones with special needs and disabilities, as well as a former educator who worked with children for 25 years. She’s written several books about caregiving, special needs parenting, and childhood PTSD, including the recently released Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilties, which she co-authored with Dr. Gary Chapman. She speaks internationally about caregiving and parenting children with special needs and blogs at www.DifferentDream.com. Jolene and her husband live in central Iowa.

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Sensory Easter Activities for Kids with Special Needs and Disabilities

Sensory Easter Activities for Kids with Special Needs and Disabilities

by | Apr 7, 2020 | Different Dream, Holidays

Sensory Easter Activities for Kids with Special Needs and Disabilities

Sensory Easter activities can be a powerful way to make the Easter story accessible to all children. Guest blogger Mark Arnold joins Different Dream readers this Holy Week to share some of his favorite sensory Easter activities.

Easter is one of the most important times in the Christian calendar and is a key point in the children’s and youth work teaching programming. It’s a time to remember, to be thankful, and to celebrate what Jesus has done for us all. But the big story of Easter can be difficult for some children and young people with special needs to understand. How do we help everyone to be able to engage with Jesus’ sacrificial death on Good Friday and his life-giving resurrection on Easter Sunday?

Children learn best when their senses are engaged, whether through things for them to touch and feel, look at, listen to, taste, or smell. Let’s look at some sensory ideas that tell the Easter story, but that will also give kids ways to access other complex themes to engage with throughout the year.

  • Let young people feel large nails, 6-inch or 9-inch ones if you can find them, as well as a piece of rough wood as you tell the Good Friday story. (Make the story appropriate for the age group.) Your an also hammer the nails into the wood as you talk. The sound of the nails being struck provides another strong sensory input. (Warning: Loud noise can be painful for some children, so headphones may be helpful).
  • Have essential oils or dried spices for the children to smell to represent the spices that were used as Jesus’ body was wrapped in linen.
  • Get some strips of white linen or cotton. The children can wrap them around their hands, arms, or legs and feel them.
  • Put large pebbles or cobble stones in the freezer so that they are very cold to touch. Use them to represent how cold the tomb was where Jesus’ body was laid.
  • Give each children a cold stone and bring the children to build a tomb. Then remove the stone over the doorway and place a tea light inside to light it up. Use a bright flashlight to represent the sunrise on Easter Sunday. Have flowers for the children to smell, representing the garden where Jesus appeared to Mary Magdalene.
  • Have children share the happiest news is that they have ever heard, just as Mary Magdalene, Peter and John shared their exciting news with the other disciples and followers. Then give them some chocolate to taste as they celebrate the good news together that Jesus is alive!

These sensory Easter activities make the more accessible to the children and young people and build their understanding. If our Easter teaching uses as many of the senses as possible, children and young people will learn and be brought into the story. We can help every child, including children with special needs or disabilities, to understand and respond to this most wonderful and life transforming message. And we can use these ideas to help us to do similar sensory teaching every other week of the year too!

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Mark Arnold is the Additional Needs Ministry Director at Urban Saints, a leading national Christian children’s and youth organization. He is co-founder of the Additional Needs Alliance, a national and international advocate for children and young people with additional needs or disabilities. Mark is a Churches for All and Living Fully Network partner, a member of the Council for Disabled Children and the European Disability Network. He writes an additional needs column for Premier Youth and Children’s Work (YCW) magazine and blogs at The Additional Needs Blogfather. He is father to James, who has autism spectrum condition, associated learning disability, and epilepsy. To find out more about how Mark’s work can help you, contact him at: marnold@urbansaints.org or @Mark_J_Arnold.

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

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Ugly Sweater Cookie Contests and EA/TEF Memories

Ugly Sweater Cookie Contests and EA/TEF Memories

by | Feb 4, 2020 | Different Dream, Encouragement, Holidays

Ugly Sweater Cookie Contests and EA/TEF Memories

Ugly sweater cookie contests and EA/TEF memories. What could they possible have in common? The answer is plenty, thanks to a recent Facebook post by a dear friend named Barb. She posted a picture about the ugly sweater cookie contest she hosted during her family’s 2019 Christmas gathering and asked Facebook friends to vote for the ugliest.*

Of course, I thought, Barb held an ugly sweater cookie contest at Christmas. That sounds just like her.

We met Barb and her young family way back when, when we lived in a remote town of 92 people in the northwest corner of South Dakota. Her 2 oldest daughters were in my country school classroom, and Barb created beautiful birthday cakes for them each year. Word got out, and since our town was at least 60 miles from the nearest bakery, she was soon creating cakes for all sorts of occasions.

She even created a cake for our EA/TEF baby’s first birthday in 1983. The cake featured a baby-with-a-feeding-tube-and-a-string-coming-out-of-his-mouth. Those who are used to 2020 EA/TEF technology may not be familiar with the 1982 version. Our baby’s feeding tube was a honking, huge Foley balloon catheter. The string went into his mouth, down his esophagus (placed there during a very dicey surgery), into his stomach, and out the feeding tube hole. The two ends were tied in a knot that was untied so dilation tubes could be attached to it when his repair scar needed to be stretched. Our baby endured this process, without anesthesia, about 2 dozen times. Thankfully, modern day dilations are less frequent, more effective, and much more humane.

To read the rest of this post, visit Different Dream’s sister blog, Down the Gravel Road.

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

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