Special Needs Advocacy, Grief, and Faith

Special Needs Advocacy, Grief, and Faith

Special Needs Advocacy, Grief, and Faith

Advocacy, grief, and faith are topics parents of kids with special needs grapple with every day. Recently, Gloria Perez-Stewart of GPS Advocacy (now GPS Law) and I talked about those topics, and more, for her BlogTalk Radio series. (Other legal topics relating to special needs are discussed on the GPS Law Blog.)

Meet Gloria Perez-Stewart

Gloria is the mother of a child with special needs and a special education advocate. Gloria Perez-Stewart works with attorneys in several states on special ed and disability cases and has presented at many conferences on disability and community organizing. She hosted a weekly radio show in Austin, Texas for a decade before moving to web and podcasts to be available for audiences nationwide.

Advocacy, Grief, Faith and Special Needs

Our conversation was wide-ranging, based on topics dealt with in depth in A Different Dream for My Child and Different Dream Parenting. We planned to discuss advocacy and grief, but Gloria was very curious about the spiritual aspects of both books. Though her agency is not faith-based, she said many of the parents she works with have spiritual questions, and she has a hard time finding resources that address those issues. She was also curious about the special needs ministry movement, as she’s had personal experience with churches that didn’t welcome her son because they didn’t know how to meet his needs.

GPS Advocacy Podcast

The half-hour interview is available at this GPS Advocacy BlogTalk Radio link. At the same page, you’ll find a link to download the podcast. So have a listen if you like. 

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 several books for the caregiving community. She speaks at parenting and special needs conferences around the country. 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 Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

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Will We Obey?

Will We Obey?

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Mary Magdalene came, announcing to the disciples,
“I have seen the Lord,”
and that He had said these things to her.
John 20:18

I love the resurrection story in John 20. Maybe because we’re both women, I identify with Mary Magdalene’s emotions.Her initial despair when she sees the empty tomb.
Her determination to carry Jesus’ body all by herself in a vain attempt make things better. Her joy when Jesus said her name, and she recognized the resurrected Lord. Her immediate obedience when Jesus commanded her to tell the disciples.

Then again, I’m not very proficient at the immediate obedience thing. If I’d been in Mary’s place, Jesus’ command to proclaim the resurrection of a man who three days ago had been declared dead, dead, dead would have stopped me cold. Because I would have made an excuse out of what Mary surely understood back in her day.

Without proof or the collaboration of other credible witnesses, no one would believe her claim that Jesus was alive. Besides, she was a woman, and before Jesus came along, women didn’t count for much. Especially not to the Jewish leaders who sent Jesus to his death and wanted him to stay dead, dead, dead.

How did Mary find courage to obey? I think the answer is found in verse 17 where Jesus calls her by name. “Mary,” he says, and she responds, “Raboni.” Then, she clings to the One who rose from the dead, the One who turned her despair into hope, the One who restored purpose to her life.

When the One who called her by name commanded her to spread the word, she held onto hope implicit in his resurrection. Clinging to hope, she made no excuses. She stood firm in the truth. She refused to water down the message.

She ran to the disciples and announced, “I have seen the Lord!”

Today, with Easter music still ringing in our ears, the celebration of Jesus’ resurrection lifts us up. Jesus bids us cling to the hope found in the empty tomb. He calls each of us by name and commands us to announce the truth to a waiting world.

Jesus is risen!
The tomb is empty!
Death has lost its sting!
Our Savior lives!

In the wake of Easter, with the empty tomb behind us and a world perishing without hope before us, will we follow the example of Mary Magdalene? Will we obey and proclaim what we know to be true?

We have seen the Lord!
He lives!

Photo Credit: www.freedigitalphotos.net

The Small Things

The Small Things

The Small Things

Parenting a child with special needs is a big thing—sometimes, an overwhelming thing. Those big things can keep us from seeing and appreciating the small things God uses to draw us close to him. With Easter fast approaching, may God use this devotion and your life as the parent of a child with special needs to fix your eyes upon the glory of the cross.

For who has despised the day of small things?
Zechariah 4:10a

As a young child, I daydreamed about becoming big-things kind of girl. I had big plans for a career as either a television star or a princess. Therefore, I focused on the big things like dramatic poses and tiaras rather than little things like learning to tie my shoes. Or telling time. Or making letters like b and d point the right way. Or memorizing math facts. Eventually, my parents and teachers made life miserable until I learned to pay attention to little things.

But I remained a big-things kind of girl at heart for many years—even after I became a Christian and started reading the Bible. I preferred the big, showy stories—Moses parting the Red Sea, Daniel in the lions’ den, and Jesus feeding the five thousand—to hidden, quiet events like Moses in the bulrushes, Ruth gleaning grain, or the long drudgery of rebuilding the temple in Zechariah’s day.

I remained a sucker for bright lights and big things until two babies entered our home six years apart. When they arrived, life became a river of small things. Tiny fingernails to clip. Itty-bitty diapers. Minuscule onesies. Little bodies asleep in my arms. The first tiny hints of toothless smiles.

The rest of this post can be read at the Not Alone website.

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 several books for the caregiving community. She speaks at parenting and special needs conferences around the country. 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 Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

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Are You Too Tired to Heal?

Are You Too Tired to Heal?

Are You Too Tired to Heal?

Do special needs care giving demands leave you exhausted? Are you numb with grief? Guest blogger Rebekah Benimoff knows how you feel—too tired to heal, too tired to hope.

To Tired to Heal

Sometimes it feels as if I am too tired to heal. I just want to get away for a bit, to have a much-needed respite from the madness. When life is spinning out of control, it’s hard to work through the losses that have come before. Often there seem to be many stops and starts along the way. Sometimes the best case scenario is simply staying connected to the One who carries me through. Survival is important, yes, but connection is imperative.

A Cloak of Weariness

Weariness settles over me, like a cloak of dust, penetrating into the inner recesses of my being. When bent low by burdens, I wonder if the weariness will cling to me for life. I want to shrug out from under the careworn mantle, but I know that this time, the only way to find release is through rest.

Fatigue is a part of the healing process. There comes a time when our bodies simply need rest. When dealing with multiple life changes all piling up at once, sorting through seems complicated. I often liken the process to searching through a bowl of tangled spaghetti strands with sauce poured over, obscuring what lies under the surface. I’ve learned to ask, “Why am I feeling what I am feeling?” and “What, exactly am I really feeling?” Most of the time anger is a mask, hiding more vulnerable feelings beneath. I feel more in control when I am angry than when I feel lost or abandoned. Anger is easier to admit to, for who wants to admit to being broken? Yet “broken” is often a better descriptor of where I am, and what exactly I am feeling.

 Loss Mingled with Hope

My story is one of loss mingled with hope. In my mind’s eye, I travel back to that moment when my world first stopped. When my son’s life, and mine, changed forever. One word, meant to diagnose, alters everything. I did not grieve the first diagnosis for a very long time. I made it my mission to defeat the disease. To conquer the diabetes. To control the boy’s blood sugar. To control everything. Nothing was gonna hurt my baby again. Or me.

Three years later, when my husband was deployed to Iraq (for the second time), I was at the end of my rope. I signed up for an inner healing study, and the work began. Slowly, the layers were removed until we came to that tender place—the wound… the diagnosis that changed everything I do daily. It was during this time that God drew my heart to a familiar story in a fresh way.  I read how Abraham and Isaac journeyed up a sacred mountain to make a sacrifice that would break body and soul. Isaac carried the wood, and Abraham carried HOPE. He tells the servants,  “We will go up the mountain and we will return.”

My First Step Toward Healing

And then I felt the urging to place my own beloved son on the altar before Jehovah-Jireh, my provider.  I envisioned laying my precious child on the altar before a loving father God, and in my mind’s eye, he took my son and cradled him. Surrender was my first step towards healing. And still is. In those times when one diagnosis (or several at once) are causing upheaval in my daily life, it’s time to search out that well worn path to the altar. When I release my hold on the illusion of control, I am set free. Set free to find hope, set free to do the good work of healing. Through prayer, introspection, good counsel, and times of rest, I move forward to that place of greater wholeness. Sometimes it is hard work. But, at the end of the day I find that healing is worth the work, and rest is the vehicle that allows the work of healing to carry on.

What about You?

Do you feel too tired to heal today? Or have you taken that first step on your journey toward healing? Leave a comment about your journey, and I will pray for you.

photo credit: www.freedigitalphotos.net

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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Rebekah Benimoff is the wife of a husband with PTSD and the mother of two young men, both of whom grew up with medical and special needs. She blogs at In the Chaos…. and In the Calm (justmemama.blogspot.com).

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Impatient People…Like Me

Impatient People…Like Me

Gap in the Clouds

This past Wednesday was not a good day.

First, I was supposed to meet a friend for coffee in the morning and because I’d written the time down wrong, got there a half hour late. Being an impatient person, I hate to keep others waiting.

But that wasn’t the worst of it.

After working on a blog post for over almost two hours, it refused to come together the way I wanted. Impatient people like me don’t have time to waste spend almost two hours on a single blog post.

But that wasn’t the worst of it.

The google chat audio feature was malfunctioning on my computer, so I missed an online meeting in the afternoon. Impatient people have no patience with technical glitches.

But that wasn’t the worst of it.

A publisher rejected a piece I wrote for a devo Bible being compiled by a friend. Not only that, the publisher wanted extensive citations (including book page numbers) for a half-dozen quotes for other pieces I’d written. Impatient people don’t enjoy skimming long books to find page numbers.

But that wasn’t the worst of it.

Hiram spent all afternoon trying to file our income tax with Turbo Tax. He’s usually pretty patient, but after several hours of online chats with Turbo Tax experts and two phone calls, he was a little cranky. Impatient people like me think we’re the only ones with a right to be cranky.

But that wasn’t the worst of it.

The cold Hiram’s been fighting for two weeks came back with a vengeance that night. He ran a temperature again and coughed all night. Which didn’t sit well with a woman who needs plenty of sleep in order to be patient.

But that wasn’t the worst of it.

The worst of it was this. I woke up Thursday morning and realized impatient people like me spend all their time looking at gray skies. We are so focused on the gloom, we don’t even see the gap in the clouds and the sun streaming through.

Impatient people like me forget they have
friends to visit,
blogs to write,
a computer that functions flawlessly 99.9% of the time,
writing projects to complete,
income tax refunds to file,
and a husband whose job provides sick leave and excellent health insurance.

Yes, that’s the worst of it.

Dear Father, forgive me for not slowing down to look for the gap in the clouds. Forgive me for focusing on the gloomy clouds and missing the joy of the Son. Please teach me to be patient…as quickly as possible. Amen.