Talking to parents who have lost a child isn’t easy. It’s about the hardest thing about working with families of children with special needs. Because many of those children are medically fragile. Many of them will die young, too young.

The Unknowing Friend’s Take

Those of us who have never lost a child share some misconceptions about grieving the loss of a child:

• We think it’s easier to lose a child living with special needs because parents are prepared for the inevitable.
• We think parents of kids with special needs should get over the loss within a few months and move on.
• We think the other children in a family will fill the empty space left by the child who died.

But parents who have watched a child die say those ideas are wrong.

Joy’s Take

One of those parents is Joy Owens who you may remember from the 4HisHeart-Snuggles from Sam series posted at DifferentDream.com in April. She still struggles with grief and writes about it movingly in a recent post at Sam’s CaringBridge Website.

Scott’s Take

Scott Newport, whose son Evan died in November of 2009 from complications caused by Noonan’s Syndrome, is struggling with grief, too. In a recent phone call, he said, “Mother’s Day was brutal. Father’s Day was brutal. This is so hard.” He often writes poetry to process his grief and gave permission to share it here.

Bearing Time

The months creep along like a weightless fog
Treasured memories cling to clay
Numbing days anesthetize want
Fear has no place to hide

Passing clouds no peek of sunshine
Winters ice forgotten thaw
Damp rains dance
Hope has no meaning

Relationships with no language
Words with no interrupter
Blank stares, no title
Vision smeared with black marker

Love stands
Against death
Alone
Wondering

“Will a flashlight help?”

Carolyn’s Take

Carolyn, one of the parents I interviewed for A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children had this to say more than thirty years after her daughter, Beth, died. “People told me to give myself a year to recover. ‘I cam remember getting to the end of one year and saying, ‘What’s this? I don’t feel any different.’ But she says somewhere between two and five years, the physical ache stopped. ‘That’s not really encouraging when you think, “We’ll be doing five years of grieving?” That seems like a really long time.’”

Five Years

Everyone I’ve interviewed about losing a child agrees with Carolyn. It takes five years. Five years.

Can you imagine being a parent and grieving for five years? Can you imagine Joy or Scott’s pain when their best, well-meaning friends advise them to get over it and move on? A few years ago, that’s what I would have said. I had no idea of the longevity of grief.

But now, thanks to people like Joy and Scott and Carolyn, I do know. And I want you to know, too. Because someday, someone you know will lose a child. When that happens, you will already know what the grieving parents won’t comprehend for several years. Their grief will last longer than they expect.

You’ll be there to be their flashlight for however long they need your help.
Five years.

Jolene

As I mentioned in the previous post in this series, God has been nudging me about beginning a special needs ministry at my local church. After all, the new building is completely handicapped accessible, so we will soon have the facilities for such a ministry. Our town is full of families who could benefit from it. All that’s missing is someone to spearhead the efforts, kinda get things going.

I’m Too Busy

That would be me.

The problem is I’m not very comfortable with the idea. In fact, I don’t like it at all. See, I’m a busy woman. I have a new book contract, with lots of research to complete and interviews to do, and a deadline. I have a full schedule of speaking engagements. All this advocating around the country on behalf of parents whose children have special needs takes so much time.

I’m No Expert

But, how can I call myself an advocate for families around the country if I refuse to advocate on behalf of families in my town? The more I think about it, the more hypocritical I feel. It’s painful, the kind of nudge I can’t ignore.

So here’s the deal. Even though, I’m reading up on the subject and have interviewed the coordinator of a stellar special needs ministry at Valley Evangelical Free Church in West Des Moines, Iowa, I’m not sure how to begin. Maybe some of you can help.

Calling All Experts and Wannabees

If you’re a lurker with experience starting a special needs ministry from scratch, your expertise is needed. Please leave a comment or send an email about books, programs, resources, or people who assisted you. Tell us your ministry’s story so we can follow your example.

If you’re a wannabe like me, leave a comment or question about what you want to know about starting a ministry. Maybe someone out there will have an answer.

I’ll Keep You Posted About the Pain

Since I’m asking you to get involved on this subject, I promise to keep you posted about my progress, too. We probably won’t move into our new facility until September, so until then it’s research and waiting expectantly for your ideas. Please, please, please start sharing them. I want to stop feeling like a hypocrite real soon!

Painfully yours,
Jolene

After almost 10 years of meeting in a high school for Sunday morning worship my church family, Grace Community Church, will soon move into a new building. We’re excited about how God will use us and the new building to reach out to people in our small town.

Uneasy and Uncomfortable

Lately, God has been nudging me about starting a special needs ministry at our church. So I wrote a column about the idea for our June newsletter. You can read it below.

And He answered and said to them,
“Go and report to John what you have seen and heard:
the blind receive sight, the lame walk, the lepers are cleansed,
the deaf hear, the dead are raised up,
the poor have the gospel preached to them.”
Luke 7: 22

Lately, God has been pushing me in a direction that is neither comfortable or easy. The closer our building comes to completion, the harder He pushes. When I ask Him to stop, He keeps pushing. When I ignore Him, He gets in my face.

The shoving match began when Hiram and I, curious about the construction progress, walked through our church building awhile back. The building’s handicapped accessibility – no steps, wide halls and doorways, handicapped bathroom stalls – pleased me since I remember how hard Mom worked to get Dad and his wheelchair into my childhood church. That’s when God started pushing. Could our church reach out to disabled people in Boone?

About the same time, I spoke at a church with a bang-up ministry for families of kids with special needs. I interviewed the program director, thinking her expertise would be a valuable addition to a chapter of my new book. The more she shared about their ministry, the more God pushed. I asked Him to stop, but He pushed harder. Families in Boone could benefit from such an outreach at Grace.

Next, I interviewed Dr. Jeff McNair, a professor of special education who also teaches a Sunday school class for disabled adults. I began reading his book, The Church and Disability, which says things like this. “Rarely are children with disabilities included in Sunday school to the degree such children are present in the community. In interactions with Christian kids at church, I have asked them where they have had experience with children with disabilities, and most often they will say in their class at public school.”

When I tried to ignore what God was saying, He got in my face, using McNair’s words again. “All levels of Christian education are wrong…because they overlook some of the most needy, the poorest, the most disenfranchised people in the world. How could any group that claims to be Christian be so blind as to miss this group? To miss such a group in the light of the gospels and the example of Christ is so wrong.” Could Grace Community Church help right that wrong?

Our church could, but do we want to? Right now, I want  Him to let us rest. After 9 years of unloading a trailer every Sunday and doing Sunday school in hallways, don’t we deserve some time to rest instead of reaching out to people who require a great investment of time, energy and discomfort?

But I suspect He didn’t provide the building of this church so we could rest. And I suspect He’ll keep pushing us until the most compromised of Boone’s citizens have the gospel preached to them. After all, our new church building is equipped to welcome the blind, the deaf, the lame, and intellectually disabled. But are we?

Oh God who provided a building, would You please equip our hearts?

Come Back Next Time

If you’re interested in starting a special needs ministry at your church or have already done so, please come back for the next post in this series. Maybe we can put our heads together and figure out how to begin.

Uneasy and uncomfortable,
Jolene

In my last post, I was tickled pink to share a searchable list of children’s hospitals. Today, I’m tickled yellow to share another great resource for parents of kids with special needs.

Wrightslaw Yellow Pages for Kids with Disabilities

Wrightslaw is best known for their educational and advocacy work in the field of special education law. They travel around the country educating parents through their special education law and advocacy training workshops. Recently they launched an online version of the workshop, which is great for parents who can’t leave home because they are caregivers for their children with special needs. But I digress.

How to Use the Wrightslaw Yellow Pages

On the Wrightslaw Yellow Pages webpage, you can find your state in the pull down menu or by clicking on your state on the map of the United States. The yellow pages for my state (Iowa) includes contact information for private organizations, foundations, practitioners, governmental organizations, and more. What a time saver! Once again, I’ll be using the Yellow Pages while doing research for Different Dream Parenting.

How to Be Listed in the Yellow Pages

If you are part of an organization that helps get services to families of children with disabilities, you can apply for a listing in the yellow pages. According to the information at their website, they are looking for “private special education schools, clinics, health care professionals, special education attorneys and special education lay advocates, and related service providers and supplemental service providers as defined by IDEA 2004 and No Child Left Behind (NCLB). Listings are free, however, not all listings will be accepted.” Click here for more information about the application process.

How Will You Use this Resource?

If you have ideas about how to use this resource or know of other great resources of use to parents of kids with special needs, please leave a comment!

Jolene

Not too long ago I stumbled upon a resource created  by the National Association of Children’s Hospitals and Related Institutions (NACHRI). Their association has compiled a list of children’s hospitals around the world. If you’re the parent of a child with a chronic or critical medical conditions, this could be a great help for you.

Search the List at the NACHRI Website

You’ll find the searchable list at the NACHRI website. You can search the list using the following categories:

• Hospital Name
• Hospital Type
• State/Province
• Country
• Board-certified specialties
• Care Delivery Programs
• Community Outreach Programs
• Camps for Children with Special Needs
• Current Research

You can also search using key words. Or you can click the “Show All” button at the bottom of the search fields and see a list of all the hospitals listed alphabetically by states in the United States, and then alphabetically by other countries.

Click on the Links

When you click on the link for a hospital, you will go to the NACHRI home template page for the specific hospital. Select information about the hospital is available on the template pages. To find comprehensive information, click on the link located at the top of the template page. That link takes you to the hospital’s website.

How Can You Use the Listing?

I’ll be using the listing while researching my new book, Different Dream Parenting. If you’re the parent of a child with special needs, you may find some great ways to use the listing, too. If you like, leave a comment and share your ideas.

Thanks,
Jolene

When my life doesn’t go as envisioned, I get pretty bent out of shape. To be honest, I make mountains out of molehills and become totally self-absorbed. My troubles, small as they usually are, become the center of my life. I ignore people who are truly suffering, those whom God has called me to uphold and encourage.

More Music for the Soul

When I’m in that self-absorbed state, I need to listen to Steve Siler’s latest song of the month, Eyes of the Suffering. It reminds me of three things. First, I am not the only person to have suffered. Second, many have suffered much more than me and survived. Third, often my problems are not true suffering. The best way to quit making mountains out of my molehills is to see life through the eyes of someone who is truly suffering.

Devotion with Shelly Beach

This month’s devotion by Shelly Beach drives home the third point and challenged me to see life with a different perspective. Perhaps it will do the same for you. Read on!

The Eyes of the Suffering

I visited a church recently where the sermon explored the various ways nurturing parents reflect God’s love. And while the content was good, the assumption was that everyone in the congregation had been parented under ideal circumstances. As I sat and listened, I couldn’t help but ache for those listening who’d experienced parental abuse or abandonment or who struggled with their own parenting skills. Their pain went unacknowledged that morning.

Looking through the eyes of the suffering means that we make a conscious choice to set aside our preconceptions so we can see the world from a new perspective. It means shouldering the hurts and cares of people who may be living messy lives. It means walking places where we may not feel safe in order to come alongside those who live in fear. It means advocating for others because our hearts are burdened by injustice, disease, poverty, abandonment, and brokenness. It means we find it impossible to define people as unlovely or unworthy, for when we see through Christ’s eyes, we see people as image-bearers of Jesus.

Ask God to give you the ability to see through the eyes of Christ. Try on some uncomfortable shoes. As you do, you’ll find yourself not only changed, but partnering with God. “Carry each others burdens, and in this way you will fulfill the law of Christ.” Galatians 6:2

If Steve’s song or Shelly’s devotion challenged your thinking, please leave a comment.

Thanks,
Jolene

Today, let’s talk about hot button phrases. You know what I mean. Phrases that don’t accurately describe your child’s situation. Phrases that emphasize a child’s condition above the child. Phrases that wound you and may someday wound your little one.

Special Needs Child or Child with Special Needs

Not too long ago, the mom of three beautiful daughters agreed to look over the outline for Different Dream Parenting: Raising a Child with Special Needs and tell me what was right on, what was off-base and what was missing. Though I’d combed through my writing and thought I’d eliminated all hot button phrases, she found two references to special needs children.

“Instead, say children with special needs,” she reminded gently. “Then the child is first. The need is second.”

My Child Isn’t Sick

Then she told me how well-meaning people often come up to her and say, “I’m so sorry your daughters are sick. I’ll pray for them to get better.”

“The thing is,” she said, “my daughters aren’t sick. All three of my daughters are very healthy, including the one with Down’s Syndrome and the one with cerebral palsy. They don’t need to get better. They are who they are, and who they are should be celebrated.”

What Are Your Hot Button Phrases?

Her wisdom got me thinking about the other hot button phrases parents of kids with special needs hear frequently. So I’m asking you to share your hot button phrases by leaving a comment or emailing me directly. If you’re okay with it, some of your responses might become part of Different Dream Parenting: Raising a Child with Special Needs. Otherwise, they’ll be between the two of us.

Thanks for your help,
Jolene

Though summer’s speeding by, it’s not too late for your child with special needs to enjoy a summer camp. Even if money’s tight or no camps meet your child’s needs, moms can create a memorable camp-like experience, thanks to Terri Mauro.

Terri Mauro and Camp Mom

Here’s what Terri says about why she started her first Camp Mom. “Finding a summer-camp experience that’s right for my son has always been a challenge. Mainstream camps had trouble accommodating his special needs. Special-needs camps were costly, far away, and still not personalized enough to really give him the kind of good time he deserved. The spring of his seventh-grade year, as I was fretting about another few months of huge bills and long drives, I made a proposal to the moms of a couple of his special-education school friends: Why not put together our own camp, tailored to our own unique kiddos, and entirely under our control? They hadn’t found any good options for summer fun either, and so our Camp Mom was born. The idea was to keep them busy, do some learning enrichment, build strong friendships, and provide a memorable summertime experience. Us moms got the same benefits.”

Check Out Terri’s Resources

Terri’s excellent resources will help you:

• Decide whether Camp Mom is a viable option for you.
• Download a Camp Mom Pre-Planning Checklist.
• Look at Terri’s Camp Mom Agenda in an easy-to-read journal format.

After you look those pages over, be sure to spend time checking out her other resources at www.about.com. Her site is packed with information, forms, book reviews, and forums for parents of kids with special needs. Since she’s the mom of two kids with special needs, her advice has been tried and tested.

If you give Camp Mom a try, leave a comment about how it went. Maybe it will spark ideas for others, too.

Thanks,
Jolene

Not much time to blog today. But the July/August issue of Parenting Special Needs magazine is now online. It is packed with great stuff. Read every informative and inspiring article at their website www.parentingspecialneeds.org. The magazine is written by parents for parents, so if you have expertise in an area of interest to the families of kids with special needs, let the editors know. Click on the “Submit” button in the menu bar for more information.

Jolene

Most of the time, I’m not a blog pusher. But every now and then I come across a blog so sincere and fresh, I want to pass it along to others. A few weeks ago, I did a series on Wrestling with an Angel, one of the few blogs written by the father of a child with special needs instead of by a mom. Today, I want to highlight Love That Max.

Meet Ellen Seidman

Ellen Seidman, Max’s mom, writes frankly about life with a son who has cerebral palsy. Many of her stories are upbeat and hilarious – she makes her child’s nine month obsession with the color purple so funny I check back often to see how it’s progressing – but she’s transparent, too. She shares her fears and disappointments freely but without self-pity.

Get in on the Give Aways

Because of her career as a magazine editor and web design consultant, she has access to vendors who provide pretty cool products for free give aways now and then. Many of them involve food, especially chocolate. I tell you, she’s my kind of woman.

Totally Different Writing Styles

A word of warning to those of you who love Greg Lucas’s blog and may be thinking that Ellen’s is like it: it’s not. She doesn’t get theological, though she can be quite thoughtful. She doesn’t talk much about her faith, but her love for her children and her zest for life are apparent. She writes from a different vantage point than I’m accustomed to, and that’s why I like her. I hope you do, too.

Love That Max,
Jolene