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

Today’s post will be the last in the interview series with Greg Lucas. (Click on these links to read Part One, Part Two, Part Three, and Part Four, if you haven’t already.) Today, Greg gets very transparent and shared some advice he wishes he’d followed much sooner than he did. See what you think about what he has to say.

Greg Lucas Interview, Part Five

Turn to God

The most important advice I could give any parent (or person) is this: Take all your anxiety, pain, frustration, confusion, concern, disappointment, loneliness and weariness and cast it on the Lord (1 Peter 5:7; Psalm 55:22). Turn away from sin and selfishness and turn in faith to Jesus’ death on the cross for the payment of your sin. Exchange your death for His life; His death for your life. Only then will you be truly able to see the amazing story of grace that God is writing through your adventure and the disability of your child.

Get Help

Then, get help—lots of help. Surround yourself with advocates and professionals and family and friends. Realize you can not do this on your own. Take advantage of respite in order to rebuild and refresh. The divorces rate in America is right around 50%. For parents of special needs children it is right around 75% (conservatively). Some sources claim the rate is in the high 80% range.

Let People In

One of the biggest mistakes I have ever made was the mistake of not letting people into my life with Jake. For years I had the mentality that no one could care for my son like myself. I held on until I nearly self-destructed, along with my ministry and marriage.

Today I am (somewhat) sane, still serving God and still married to my wife of 21 years. Not because we have it all together, but because we trust in Him who holds everything together. Not because I held on tightly in my own strength, but because I finally and humbly released my grip and reached out to those who were waiting to help all the while.

Your Advice is Welcome, Too

If you have advice to add to Greg’s, please leave a comment. And if you haven’t yet visited Greg’s blog, Wrestling with an Angel, be sure to take a peek. It’s great!

Jolene

Welcome back for Part 4 of the interview with Greg Lucas, who blogs about living with Jake, his son who has special needs. If you haven’t read Part 1, Part 2 or Part 3 of this interview, you may want to go back and do so before diving in here. And be sure to visit Greg’s blog, Wrestling with an Angel, when you have the chance.

Greg Lucas Interview, Part Four

In this post, Greg shares his opinions about this question: What can churches, schools, friends, family, medical community do better to support parents of kids with special needs? I think you’ll find his answers to be insightful and challenging.

Churches

Make it easier for parents of special needs children to worship. Realize that this one morning may be the only time they get to sit and reflect on the word of God while being encouraged by good biblical preaching. Start a disabled ministry that fits the disabled children in your church. Do this even if there is only one child with a disability. I promise that when your church develops a reputation for ministering to disabled families, more will come. Even if you do not currently have any disabled children in your congregation, train members of your church and have them prepared just in case such a family would visit.

Schools

Educate children on disability and form mentor groups within the special education classes. If you want to build and develop more productive children in society, let them spend some quality time in the special needs classrooms. While we may need to segregate for special education purposes, we also need to integrate for character building purposes.

Friends

Some of the dearest friends we’ve had have been the ones who have loved Jake like he was one of their own—smells, sounds and behaviors included. Families with disabled children are sometimes hesitant to expose their life to others. Be the friend that they can be comfortable around.

Family

You are the lifeline. When all else fails, babysitters call in, sickness invades, work schedules conflict, disaster comes, or just some time alone is desperately needed, extended and immediate family members should be there to take up the slack. Call often and ask if everything is ok. Give the parents a regular date night or a weekend away. At the very least, let your special needs family know that you are there if they need you. Again, you are their lifeline.

Your Turn Now

If you have ideas to add to Greg’s suggestions, please leave a comment. And come back in a few days for the last post in this series. Greg will be sharing some advice for parents of kids with special needs.

See you then,
Jolene

P.S. Today’s photo comes from Terri Mauro, the moderator of specialchildren.about.com. Check her out, too!

This post is the third in a series where Greg Lucas is answering questions about life with his son Jake. If you haven’t read Part One or Part Two, you might want to do that before going any further. In this post, Greg tells us where he and his wife, Kim, have found their greatest support.

Greg Lucas Interview, Part Three

Our greatest support in raising Jake has been God and His amazing grace. I don’t say that flippantly. Our entire journey with Jake has served one overall purpose—to point us toward the cross of Jesus and the grace, mercy, strength and glory of God. Without this, Jake is a tragedy and our lives are a travesty of hopelessness. But Christ is our hope and God is our fortress and His word is our strength and through His promises we know that He works all things for our good and for His glory.

There have been others that God has divinely placed in our lives throughout the years to help and support us. It seems like everywhere Jake goes, God gives him a special favor in the eyes of those around him. These people have been special education teachers, family members, church members and friends who have stood beside us and invested in Jake. This investment was never easy, but I have heard hundreds of testimonies of how this one investment impacted and changed their lives forever.

Amazing Grace

The grace of God toward Jake and his family is amazing, but equally amazing is Greg’s ability to recognize God’s grace in the midst of struggles. Rather than going on to another question in this post, I invite parents of kids with special needs to think about how God has shown grace in your lives. Stories of grace are a great source of encouragement, so please, leave a comment if you like, and share yours.

Thanks,
Jolene

In the first post of this series, you met Greg Lucas, who blogs at Wrestling with an Angel, and his family. Greg shared some of the story of how their son, Jake, changed their lives and brought them to a crisis point. In this post, Greg tells what happened when God sent a storm into their lives, one they couldn’t handle and describes what life with Jake is like today.

Greg Lucas Interview, Part Two

Here’s the second half of Greg’s answer to these questions: Would you tell Jake’s story, as much as you feel comfortable sharing? How has his condition changed your lives? What have you learned from the experience?

We were losing our son. With every seizure he was slipping further and further away. I’m not sure the day or the hour, or even the place, but somewhere near the end of Jake’s second year, we fell on our faces in total desperation and cried out for the mercy of God.

Then, just as Philippians 4:7 promises, the peace of God came to us. We were forever changed. Jake was still sick, but God was in control.

Two weeks later the seizures stopped—completely. And they never returned. But for some reason Jake never progressed much past that second year. Doctors have diagnosed everything from cerebral palsy to autism, but diagnoses have never been much help for us.

Today Jake remains on a two year old cognitive level. He does not speak and he has some physical disabilities, mainly with walking and fine motor skills.

And yet, with all of his disabilities, he has the amazing ability to connect with people in a life changing way. Everywhere he goes people are changed by the grace of God in his life.

That is exactly how he has changed our lives too. Jake has taught us much about patience, perseverance, humility, compassion, dependence and grace.

I like to tell people that a mentally disabled child led my wife and I to the Lord, and since then has shown us more about the grace of God than any theologian, scholar or preacher ever could.

Jake and His Siblings

Here’s what Greg had to say in answer to this question: If Jake has other siblings, how has it affected them?

Jake has two younger brothers (Noah and Aaron) and a little sister (Hope).  Noah, Aaron and Hope all seem to be natural caregivers with the gift of compassion. Perhaps they were born this way. More than likely, Jake molded and shaped this gift into what it is today.

I say this because it’s not easy living with Jake. The smells and sounds are not inviting, and no personal property is safe from his reach. Yet no one complains. It is not a simple decision to invite friends over to our house or to have an overnight party knowing that anyone who gets close to our family will have to get uncomfortably close to Jake. Yet friends are over to our house all the time allowing Jake to be right in the middle of their “cool” crowd.

Going out in public is much the same. Teenage kids have a difficult enough time being embarrassed by the presence of their parents around other kids. Add Jake to that scene and one could expect some anxiety in the quest for popularity. Yet our boys often walk with Jake through the mall, pushing his wheelchair and even introducing him to their friends. Of course more people know Jake than know Noah, Aaron or Hope so maybe they are actually gaining in popularity by hanging around with their “cool” brother.

Miraculously, the characters of my other three children shine in the presence of their disabled brother. In short, I think I could say with grace, Jake has made each of my children better people.

Come Back Next Time

Pretty amazing family, huh? If you like what you’re reading, come back next time to find out what has been the Lucas family’s greatest support. Until then, be sure to visit Greg’s website if you haven’t already. It’s too good to miss.

Until next time,
Jolene

I love to read blogs by parents of kids with special needs. Why? Because the parents are so transparent and so loving as they share their daily struggles. Most of the blogs are written by moms, but recently I ran across one written by a dad, Greg Lucas. Greg blogs at Wrestling with an Angel. He shares the joys and frustrations that are go along with being the parent of seventeen-year-old Jake.

After reading a few of his posts, I left a comment and asked to interview him. Greg graciously agreed to answer my questions via email. Now it’s time to share his wisdom with you. Other than breaking the interview into several posts, his answers have not been changed. Here are his answers to several background questions.

Greg Lucas Interview, Part One

1.  What are the names of your family members?

Greg (dad), Kim (mom), Jake 17, Noah 16, Aaron 14 and Hope 4

2.  What is your job? Wife’s job? What kind of schooling have you chosen for your children?

I am a police officer and my wife is a neonatal flight nurse. Our children attend public school and just recently Jake was enrolled in a full time transitional school to teach him independent skills as he transitions to adulthood. While the public school system in our area is not known for the best special education, through God’s providence, we have always been blessed with excellent caring teachers. Much of our success with Jake has come from these extraordinary special education school teachers who went above and beyond to love, care for and teach our son.

3.  Would you tell Jake’s story, as much as you feel comfortable sharing? How has his condition changed your lives? What have you learned from the experience?

Jake was born in the neonatal unit at the hospital where my wife worked as a nurse. He was about 6 weeks premature, but rather healthy. My wife noticed a note on Jake’s isolette indicating that the birth mother had abandoned him to Health and Human Services. To make a long story short, we obtained an attorney, contacted an adoption agency and went through the legal work to adopt Jake. At that time he seemed perfectly healthy although we knew some of his birth parents past history of drug addiction and lack of prenatal care.

Jake was a little delayed for the first year of his life, but still progressing well. Then, right after his 1^st birthday he began having apnea related seizures where he would stop breathing for up to two minutes. We spent that entire next year in hospitals and doctors offices trying to control the seizures, but they became worse and worse. Between the seizures and the medications to control them, Jake became lifeless, distant, and severely developmentally delayed. He remained in this stupor condition for almost a year.

Kim and I were young, inexperienced parents who felt extremely weary, emotionally drained, and hopelessly defeated. Right before Jake’s second birthday we came to the end of ourselves.

We were religious, in the sense that we attended church and called ourselves “Christians”. But neither of us knew God in an intimate way. We knew of Jesus, but He was not our treasure. Instead, we were dependent on our own strength and our own tenacity to get us through the difficulties of life. Then God sent a storm into our life that neither our own strength nor tenacity could handle.

To Be Continued…

Are you hooked on Greg’s writing yet? If so, come back in a few days and read the rest of Greg’s answer to the third question. You won’t be disappointed. Until then, you might want to spend some time at Greg’s website where you will find pictures of Jake and Greg.

Thanks for sharing your story, Greg.
Jolene

On the surface, caregiving for an infant or child appears to be quite different from caring for an adult. But as someone who grew up with a father who required nursing care and as the mother of a newborn with major medical needs, I can tell you the two experiences had a great deal in common. One of the greatest common needs of caregivers in both situations is for someone to care for them.

Precious Lord, Take My Hand

In Precious Lord, Take My Hand, Shelly Beach does exactly that. True, her story is about taking first her elderly father-in-law and then her parents into her home and caring for them. She shares her frustrations and joys with honestly and spiritual insight. Humor and compassion carry her, her elderly family members and the reader through end-of-life issues. By the end of the devotional book, Shelly’s father-in-law, her mom, and her dad will be your dear friends, encouraging you on your caregiving journey.

You will identify with the stories in Precious Lord, Take My Hand because it cares for the caregivers. Whether the person needing care is eight or eighty, their caregivers need the same things: an encourager who understands the challenges they face, a compassionate voice assuring them they are not alone, a guide who can point them to practical resources, and the assurance of someone who knows God is faithful in the joys and sorrows of life. You’ll find all those things in Shelly Beach’s book.

More About Shelly Beach

You can learn more about Shelly and her other non-fiction and fiction books at www.shellybeachonline.com. She’s a versatile writer, and her other titles may interest you. She’s got several other projects in the works, so visit her site now and then to see what’s new.

Happy reading,
Jolene Philo

One role every parent plays is that of being a child’s advocate. Parents of kids with special needs sometimes have to advocate for their children in special ways. The role can seem intimidating for young parents preparing to ask questions and share concerns with people in the medical community.

Special Kids Need Special Advocates

In this short video, I share seven ways to become a better advocate with doctors, nurses, and other health care workers. Some of the ideas come from our own experience and some come from other parents. Rest assured, none of us asked for the role or expected to become effective advocates.

Special Kids Need Special Moms Video

But it happened because we weren’t in it alone. God brought people and situations into our lives that equipped us to do what we thought was impossible. If He did it for us, He can do it for you. Hopefully this video will be one of the tools He uses as you speak on behalf of your child.

Special Kids Need Special Moms

Special Kids Need Special Moms Outline

Of course, the old teacher in me can’t resist the opportunity to make an outline. Click on the link below to download the one that goes along with this video.

Special Kids Need Special Moms Outline

If you’ve advocated for your child, leave comments about what worked for you.

We’re in this together,
Jolene Philo

If you’ve heard of the Make a Wish Foundation, raise your hand. Do the same if you’ve heard of Dreams Come True. Yeah, that’s what I figured. Unless you live in the southeastern part of the United States, you probably haven’t heard of Dreams Come True.

Dreams Come True

I learned about the organization from a mom who emailed me after finding www.DifferentDream.com. The Dreams Come True organization was arranging a trip for her daughter, Winter, who suffers from a painful skin condition. A visit to the Dreams Come True website impressed me enough to feature the organization in today’s post. If you’re from the southeastern United States and have a critically or chronically ill child, you’ll want to visit the site, too.

Winter’s Dream Come True

If you want to hear about Winter’s dream come true, visit her CaringBridge page. She and her family spent several fun filled January days at a dude ranch in Montana. Maybe that’s not your idea of a dream come true, but the doctors said cold and dry weather would ease Winter’s skin condition. Being from Florida, she wanted to know if they were right. Dreams Come True helped her find out.

If your family has been helped by Dreams Come True or Make a Wish Foundation, leave a comment about it. Your stories are important and an encouragement to others.

Hoping all Your Dreams Come True,
Jolene

The previous two posts in this series, you learned how the needs of two ordinary families led to the creation of Faith, Hope & Charity, a residential care facility for children with special needs. To learn more about the many services currently offered at their state-of-the-art home, visit their website, FaithHopeandCharity.org.

A Powerful Example

The two woman who conceived the idea for the residential home were ordinary people like you and me. But their example is a witness of what parents can do to effect powerful change. When Rose and Mary started searching for a way to care for their daughters with special needs without neglecting the other members of their families, they never imagined what Faith, Hope & Charity would become. All they knew was that their girls needed help, and it was up to them to find it.

One Step at a Time

So they started small, taking one step at a time, using the resources available to them to do what they could. Once they had a house, a care giver, and someone with legal expertise they took the next step. Slowly, step by step, over more than forty years, the facility evolved into the impressive residential facility it is today.

Follow in their Footsteps

It’s hard to imagine that ordinary parents like you and me could effect lasting, meaningful change like that. It’s hard to believe there are resources available. It’s hard to decide where to start. It’s much easier to assume there’s nothing we can do. It’s easier to throw up our hands and say nothing will ever change. It’s easier to give up.

But Rose and Mary didn’t give up. They took one step, then another and made slow, steady progress. You can do that. I can do that. Who knows what we could do in the next forty years if we go one step at a time?