Experiencing Joy

This is the day the Lord has made, let us rejoice and be glad in it. (Psalm 118:24 NLT)

Today, yes today my soul is filled with joy.

And although I wish I could say that is my normal, I have to admit there have been many days that I have wasted the gift of the present day by fretting about the future. Oh, today though, I stopped and breathed in the experience of being present in the moment and discovered a bounty of blessings all around me. I was met with gladness, with pure joy that overflowed in my heart… you know the type of joy that makes you just want to get up and dance and skip around the room…yes that type of joy!

It was not an elaborate vacation or hiking in a flowering field, that brought such joy. No, it was sitting in the stands of my son’s Special Olympics track and field event.

The world seemed to have stopped as I took in the scene of over 100 athletes who all had challenges but not one single individual showed the struggle or the pain on their faces. I watched athlete after athlete, my son included, crossing the finish line with smiles and shouts of joy at their accomplishment. Here were individuals that had to persevere through so much to just make it to the event not to mention the physical or sensory obstacles that stood between them and the finish line. It did not matter if they came in first or last, their focus was locked on the finish line. I saw athletes stop running to go to another athlete’s side who had fallen, I saw athletes walking with what looked to be a debilitating limb, I saw athletes in wheelchairs powering through with their hands… all with one goal in mind, to finish!

I leaned further and further into the moment. I embraced the present and I saw modeled right in front of me how to receive the day as the Lord intended and I watched what it meant to be truly glad in it. And at that moment, I heard a whisper in my spirit say “Child, every day can be like this when you receive the day as a gift from Me and focus only on being present in it!” I breathed in again absorbing the lesson my Savior was teaching me at this moment . A lesson on how he longed for me to receive the gift of the day from Him and embrace it with gladness.

But some days are really hard on this earth, aren’t they? Some days the pain of broken relationships, or of illness, or of job loss, or of loss of life can take us down and steal our joy. But our Lord declares even those days, He has made! For me embracing this truth meant I needed to move the truth out of my head and into my heart. Such a journey would allow me to say through the pain, that there is gladness in my heart and rejoicing in my spirit even on such hard days.

As I sat and watch men and women with such gladness pushing through so many obstacles, tears of understanding of what it looks like to rejoice and be glad came to my eyes. And my soul was being transformed to see with the eyes of my heart. At that moment, sitting there on those stands, I was taking a profound lesson on joy.

So let me ask you a question, are you sitting with joy in your heart today? If not, what is holding you back from accepting the gift of the day and truly being glad in it? If you are struggling to find joy through the pain, then would you consider inviting God into your doubt, your hurt, and your fears? Come to Him authentically and let your heart be molded to His likeness so that you can receive every day (even the painful ones) as a gift from Him and experience joy!

Written by Carrie Park

From Carrie’s heart…

By God’s grace, my heart was taken captive by Him and I was brought to my knees as an adult acknowledging my need for my Savior.  God has filled my life as a wife, a mother of five, and as a leader of people. And through this journey, I have discovered a passion of mine to reach, encourage, and inspire others to live a thriving life with our Savior, Jesus Christ. 

​So come, grab a cup of tea settle in and find encouragement from Carrie’s blog Abiding in the Between here.

Determining Where To Start as Your Child with Special Needs Nears Adulthood

Determining where to start as your child with special needs nears adulthood is no easy task. There are legal matters to address such as special needs trusts and guardianship, advocacy strategies to pass on to kids, and much more. The list is full of important things to address. Because your child’s eighteenth birthday is not yet imminent, they may be ignored.

You know what I’m talking about, right?

I’d like to give you a hand in determining where to start as your child with special needs nears adulthood. So today I’m sharing three–count ‘em–just three ideas. Whether your child is five or fifteen or somewhere in between, completing these three steps can help you jumpstart the process.

#1: Obtain Hard Copies of Your Child’s Medical Records

Electronic medical records are a great invention. They can also be very hard to access when hospitals and clinics update their computer systems. Who knows what will be in place when your child reaches adulthood? Therefore, it’s wise to obtain paper copies by contacting the practices of the doctors and therapists who treat your child. They can tell you how their process works and what costs may be involved. Most likely, you will be sent an electronic file to download and print out. If your child’s medical history is complex and ongoing, you may want to request records every year or two to update your paper files.

 #2: Write Down Your Memories of Your Child’s Medical History

Write down your child's medical history. You probably remember what treatments (for physical, mental, and emotional ailments) your child received, but your child might not. Our son has no explicit memories of the tests, treatments, and 7 surgeries he went through before he was 5. So when he was a young adult, I wrote a narrative that included the hospitals where the surgeries took place, the doctors and surgeons who treated him, and anything else I could remember. Your memories can fill in the gaps in your child’s medical records and shows that your child is a person, not a patient.

 #3: Share Your Child’s Medical History with a Trusted Person

Make two copies of your child’s medical records and history when you print them out. Slip one set in a manilla folder, label it clearly, and file it with your important papers. Package up the other set and give it to a trusted family member or friend. Choose someone who cares deeply about your child (include your child in the selection if at all possible) and will remain involved in your child’s life should something happen to you. Invite that person over for coffee and review the records and history with that person. Meet every few years for to update the paperwork and go over everything again.

Completing these three steps will ease your anxiety as your child nears adulthood. They may also help you build momentum to address other issues related to that important life change, so the transition is as joyful and smooth as possible.

 Written by Jolene Philo

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 recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

When It Is Not Well With My Soul

Today I want to introduce you to someone. This person is acquainted with grief. He knows what it is like to experience loss. He has been through it. Now I know what you’re thinking, you’re thinking I am going to talk about Jesus and will relate it back to having a savior who is intimately familiar with pain and gets what you are going through.  Nope, although that is true and would be a good article.

Today I want to introduce you to Horatio Spafford. Horatio was a successful attorney and real estate investor who lost a fortune in the Chicago fire of 1871. Around the same time, his four year old son died of scarlet fever.

Horatio thought it would be good for his family to get away for a while so he sent his wife and four daughters on a ship to England, where he planned on joining them later. As his family was traveling, the ship was involved in a collision and sunk. Horatio’s daughters perished in the accident.

As Horatio travelled to meet his wife, he penned the words to the hymn, “It Is Well With My Soul.”

When peace like a river, attendeth my way,

When sorrows like sea billows roll

Whatever my lot, thou hast taught me to say

It is well, it is well with my soul.

If you didn’t know the back story, this is one of those hymns that you would think was written by someone who had an easy life and never experienced loss or hard times.

As I write this and share about Horatio’s response to his pain, I’m fearful that you may think that I am saying that you are not supposed to grieve the hard, the difficult, the pain that is in your life. I’m fearful that you may think that I’m saying that we are supposed to gloss over it all and say that everything “is well with my soul” similar to answering “fine” when asked, “How are you?”

That is not the message here. I like Kristene DiMarco’s rendition of the song. In it she sings,

Through it all my eyes are on you. Through it all it is well.

Let go my soul and trust in Him. The waves and wind still know His name.

When we are in the midst of the storm, we can say ,“It is well with my soul” when we keep our eyes on Him. It is not well with my soul because of life circumstances. It is well because I know that God is in control. This does require a trust in God in the midst of the hard, which can in itself seem hard…sometimes impossible, especially when you feel like your boat is sinking. But, remember you do have a savior who gets what you’re going through and is intimately familiar with pain and sorrow. The same savior who calmed the waves and the wind is in control and knows what you are going through.

Hmm…I guess this article was about Jesus after all.

Written by Jonathan McGuire

Jonathan McGuire  is  the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.

Hope Anew has launched the Hope Anew Online Community and would love to have you be a part of it! You can learn more at www.HopeAnew.com.

Ideas For Spending Time with God in Any Stage of Life

In this life with kids with disability, everything changes; including the time, mental, and emotional energy we have as moms to put into our time getting to know God and His words to us.

There is never one “right” way to get to know God, learn about Him, and spend time with Him. There is so much freedom in that! It can look different for everyone. Not only that, what it looks like will very likely change over the years and seasons of our lives as our time and other responsibilities change.

In college, I used a set daily format, went through 2-10 verses at a time, took notes, and spent time praying for a total of around 30 minutes. On occasion, I skipped dinner or snuck away on weekends to get longer periods of uninterrupted time in stillness reading and praying.

But then there was marriage and kids and a child with a disability and medical issues. I didn’t even have two quiet minutes, let alone hours to steal away.

Maybe you’ve never read the Bible through in its entirety and are at a spot in life where that would be a perfect goal for you and would help you get to know God more. Maybe you have to sit in a therapy or doctor waiting room for a few hours per week and that would fit in beautifully. It’s an admirable and worthy goal! I’m so thankful I’ve been able to do that many times. It has been enriching to see the whole of God’s plan throughout time and to see themes repeated I would not have seen were I reading a few verses or one or two chapters at a time.

If you are in a place like I found myself this past December, maybe it’s time to change things up.

My solution - I’ve purchased a coloring Bible, because I don’t sit in quiet stillness well anymore. This year I am going to spend time coloring and meditating on one verse per day while resting and waiting in God’s presence.

If you are in a stage of life where kids and caregiving are making Bible and God time difficult to impossible, here some suggestions:

First, focus on being faithful to whatever God has put into your day. If caring for a child all day (and all night) is what He has put in your day, don’t feel guilty for not getting in a time of Bible reading or study. There was a time when Elijah was doing God’s work to the point of exhaustion. God didn’t tell him to get with it and do more. No, God sent an angel to give him food and water and told Elijah to eat, rest, and eat some more. If that’s the stage you are in, be faithful with what is in front of you. Rest in God and knowing He loves and cares for you. It’s about His grace and mercy, not your effort!

Second, once you’ve rested and eaten, try to memorize one or two verses that you can meditate on should your child fall asleep in your arms and you don’t dare to move a muscle (I’ve been there). I liked Isaiah 40:11 and Zephaniah 3:17, but choose ones that speak to your heart and mind.

Third, I encourage you to get an audio Bible. YouVersion has a read aloud feature for free that can be used with the various Bible reading plans. Last year, I got the One Year Chronological Bible on Audible for $6.50. That’s a great investment to be able to fit some Bible “reading” into bits and pieces of your day when a paper copy just won’t work.

Whatever stage you are in, there is a way to spend some focused time with God. Even if it’s when your child has fallen into an exhausted sleep in your arms after hours of screaming and you just picture yourself held in His arms just as you are holding your child in your arms.

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Making New Traditions

Pumpkin pie, turkey, football, stuffing, twinkling lights, snowflakes swirling down, pies, family gatherings, gifts around a tree, and cookie decorating. The holidays. They inspire a feeling of cozy warmth, celebration, and cherished memories. Until they don’t. Until thinking of those memories breaks your heart in pieces because life has changed. You now have a child with special needs or disability that has changed everything.

When our son was young and was allergic to most foods, highly sensory sensitive, nonverbal, autistic and more, the holidays rolled around and that meant no pie, no cookies, no stuffing, no Grandma’s special bread rolls, no gravy, no family gatherings. Too much noise, too much chaos and stimulation, too much change, too great of a chance for food reactions. Too much of some things, yet nothing of the desired things.

Our first Christmas with him was miserable. We were 1100 miles away from family and because of our son’s needs and our financial constraints, we didn’t even try to go home for the holidays. We decided we needed to make our own Christmas traditions since we couldn’t be with family.

In our family we do birthday desserts since my husband detests cake. With Christmas being Jesus’ birthday, our first new tradition was to have a birthday dessert with candles and sing “Happy Birthday” to Jesus after our Christmas meal.

I made a cherry pie (my husband’s favorite) with all special ingredients that we could eat on our son’s special diet, which I had to strictly abide by since he was nursing. It took me hours to find a recipe that met the requirements (special diets were rare at that time), had to special order some ingredients, and spent an hour or more making it. We were so excited about this pie. It was the pinnacle to our somewhat sorry Christmas meal. With great anticipation we served it and took our first bite – yuck! It was awful. We trashed the rest of the pie.

Holidays can be a very difficult time for families with kids with special needs. Many of the traditions they used to enjoy, they can’t anymore. Family gatherings they used to cherish, they can’t participate in anymore. It can be an especially hard and lonely time as the difficulties that come with special needs are magnified and what has been lost looms larger than ever.

Our first attempt was a sorry start to new holiday traditions. However, we persisted and 11 years later, we have some special Thanksgiving and Christmas traditions. If you find yourself in a place that we were at eleven years ago, think about starting some of your own traditions that fit your family’s needs. Here are a couple of ours to get your thinking started:

• We made our own specialty-diet approved Thanksgiving menu.

• We have a Thankfulness Pumpkin where each morning of November, we each say one thing we are thankful for and write it on the pumpkin with a Sharpie.

• We have a Christmas moose (we couldn’t afford the famous elf so we used what we had) that hides at night every night in December and on rare occasions finds himself precarious spots. We don’t do elaborate scenes, it’s more of a “hide and seek”. The boys love searching for him every morning. On Christmas morning, he is always kneeling with Mary, Joseph and the camels in the nativity.

• Every Christmas Eve we have a pajama party and watch Elf. Often we open one gift beforehand, which happens to be new pajamas.

• When we aren’t with extended family, we make Jesus a birthday dessert and sing him “Happy Birthday”.

If you are in a tough season of not being able to participate in holiday celebrations like you used to, I hope you are able to create some new traditions that fit your family’s needs perfectly!

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Seeking Solace In The Pain

Job tells the story of a man whose entire life was taken from him in a single day: his property and livestock stolen or destroyed, his servants and children killed.

Seven sons.

Five daughters.

7,000 sheep.

3,000 camels.

500 yoke of oxen.

500 donkeys.

“a large number of servants.”

 “This man was blameless and upright; he feared God and shunned evil” (Job 1:1 NIV) yet he was struck with the starkest of pains. Natural disaster and human evil together devastate Job’s life. Like us, Job cries out to God in despair. Job chapters 3 and 6 show the depths of that despair: he wishes that he had never been born, that God would grant him the release of death. He cannot eat, he cannot rest, he is completely undone.

If only my anguish could be weighed

    and all my misery be placed on the scales!

It would surely outweigh the sand of the seas

Job 6:2-3a

As a parent of an autistic child, Job’s words feel familiar, I have felt the same sting. Of course, he suffered far more than I, his calamity is far greater than mine, but in his anguish I dare to call him brother.

The problem with the book of Job is that it doesn’t do the one thing that you want it to do. It doesn’t tell us why pain and suffering exist. We all ask why. We all want to know the reason for our suffering, that it somehow matters. We want it justified. And as a rule, we don’t get an answer to this question. The book of Job in particular and the Bible as a whole do not set out to give systematic reasons for evil and suffering. There are pointers to be sure, but more so there is an assumption that suffering is a part of the world we live in. The bigger questions then, are how does God relate to us in this suffering, and what is He doing about it. The question for us is how should we respond?

All too often we buy into the modern, western notions that everything should work out for the best in every situation and if it doesn’t then there has got to be an answer. We have to find some explanation, something or someone to blame.

Barring that, we may deny the reality of the suffering altogether because it seems to somehow contradict what we believe about God and the nature of his interaction with the world. Are we afraid of what will happen if the truth gets out? Are we afraid of what will happen to us, to our belief, our world if we don’t have nice neat answers? Sometimes I think so.

Over the coming months, I want to look at how we, as parents of children with special needs, tend to respond to the reality that we face on a daily basis. We do not suffer in the way that our children do. We do not experience the often overwhelming and pervasive issues of being misunderstood, of not being able to cope with things that others take for granted, of not being able to communicate or see the world in the ways that “everyone else” does. But we do far more than simply see these things happen to our children. We “suffer with” in a very real sense. The heartache is real, the concern is real. The pain is real.

I have found that there are basically four responses we parents of special needs kids have when confronted with the often stark, in your face reality of the suffering of our children and yes, our own suffering. Perhaps one, perhaps all of them reflect your experience:

1.      Whose fault is this?

2.      Why would God allow this to happen/why would God do this?

3.      It is all the devil’s fault.

4.      Fault? There is no fault, how dare you suggest that? 

All four responses are entirely understandable, but none of them, I find, truly address the reality that we, and our children, face. I believe there is a better response. Harder, but better. It is realizing that God is a God who suffers with us.

So if any of these four responses feel familiar (or if all of them do) I invite you to take a journey with me to explore how we might better respond to the suffering we face.

Written by Kevin O’Brien

Kevin O’Brien is a husband, father, ordained minister, writer and volunteer theologian. He holds a Master of Divinity and Master of Theology from Liberty Baptist Theological Seminary where he won the Th.M. award in 1997. He has also done graduate work at the Institute for Christian Studies in Toronto. Kevin worked as a brand manager on the Bible team at Tyndale House Publishers. During his time at Tyndale he has helped to develop several Bibles and has written articles which have appeared in The Way, the iShine Bible, and the Illustrated Study Bible. He also wrote a series of devotionals for WAYFM’s World’s Biggest Small Group and is currently at work on a devotional series .

Most recently, Kevin wrote an Advent devotional eBook. You can find it here. 

Kevin lives in the far western suburbs of Chicago with his wife, three children, a dog, and a cat. He would prefer to spend his time reading, writing, woodworking and watching the Chicago Blackhawks.

OK, It's Safe to Cross Now

“Even though I walk through the valley of the shadow of death, I will fear no evil,

for you are with me; your rod and your staff, they comfort me.” (Psalm 23:4)

Early mornings near my home are fairly busy, as there are two schools both within a few blocks, one an elementary school, the other, the junior high where my autistic son attends.

We live on a corner and we frequently see both lines of cars and buses and droves of students on bikes and on foot walking down the street, specifically to the junior high. Since I usually walk the dog about the time everyone is frantically trying to make it there on time, I get an up close view of all of the daily activity. 

Recently I was walking the dog on just such a morning when, as I was crossing the street to get to the park, I noticed a couple of girls from the junior high standing on the corner waiting. I normally might not have cared, but being both a parent and a former teacher, my antennae go up when I see adolescents just standing around. My brain goes to concerning thoughts related to bad behavior, like are they up to something, is there some concerning reason why they would just be standing there, why are they standing on that corner after all? 

I walked down the block to the point I normally go to with the dog, and when I came back I noticed they were still standing there, but this time I kept an eye on them as I started to cross the street back to my block. However this time I also noticed a special needs student from my son’s classroom walking down the street heading towards school as well. To my sheer amazement, the two girls, who my imagination let me go crazy with ideas of suspicion, now acknowledged the girl as she was walking. The girl, who my son has attended school with since kindergarten and who’s family we know well, was apparently friends with the two girls standing on the corner. And then, I was truly blown away, as I heard one of the girls tell my son’s classmate, “Its ok to cross now, you can walk over.” The girls weren’t up to no good, they were actually waiting for the other girl and then watching the street so that she could cross it safely.

This was a small but profound event at the beginning of my day that I couldn’t explain, but made me, as a special needs parent, feel so good about the school my son attends and the community we live in.

In the same way, I was reminded of how that small experience mimics our relationship with God, how so many times we find ourselves walking, seemingly alone through life, and frequently coming up to a place of potential danger. But somehow we have a protector waiting for us on the other side, watching us, guiding us, and speaking to us about the times when it is safe to cross, and sometimes using the most unlikeliest of crossing guards.

Written by John Felageller

John lives in Northbrook, IL with his wife Elizabeth and his son Christopher (ASD), and is currently a Social Programs Manager at Total Link 2 Community in Chicago, IL.  He is a regular contributor to Key Ministry’s Special Needs Family blog, and is both a live presenter and on Key Ministry’s Facebook page. He coordinates a Special Needs Dads meet-up in his community and works with several other local Special Needs organizations that serve both parents and children.

 

Connect with John on his Facebook page here.

You Can Worship How You Want

     “Praise him with trumpet sound; praise him with lute and harp! Praise him with tambourine and dance; praise him with strings and pipe! Praise him with sounding cymbals; praise him with loud clashing cymbals! (Psalm 150:3, ESV).

Our family enjoyed a wonderful summer of camping in our new Airstream trailer this summer. I have written about our experiences learning how to use and set up the trailer in other blogs, but I have not really touched on our times while at the various campgrounds. For the most part, all of the locations were quite nice and the various travelers were quite lovely people.

But having an autistic child is always a challenge when visiting new, unfamiliar locations, and being around folks who may not have an awareness of those with special needs. We really did not have any issues with kids or adults asking any questions, but that changed on our very last trip of the year.

We traveled to a small private campground a couple of hours from our home, and we arrived late on a Saturday so just had enough time to get set up and go straight to bed while under the cover of darkness. The next day we awoke and my son was his usual excited self, and my wife, wanting to give me time to shower and dress, decided to take my son on an early morning walk. As she walked through the campsites and came up to the common buildings at the front, she began to hear the beautiful sound of worship music, and decided to follow it to the source. She came upon the activity center where a Sunday church service was being held, complete with a pastor and a worship leader on piano, and rows of folding chairs. My wife decided this would be a welcome stop for them so she decided to sit for a little and enjoy some time in the Spirit.

As usual, my son loved the worship part, being engaged with the group and though being non-verbal, still made a joyful noise with his squeals and utterances. However, once the worship part ended, he began to get disregulated and as is normally the case, he began to get extremely sensory seeking, and proceeded to bang on and knock over the folding chairs. Startled and shaken, my wife reacted the way that we always do, she took my son and immediately left the space, apologizing her way through the crowd and out the door, and headed for home.

When she got home she shared her experience there and how bad she felt with our son having a small meltdown, but she also expressed how polite and respectful people were, asking her if she was ok or needed any help. She told them she was fine and thanked them, not being used to such concern from folks in public places, even at our own church services. I was grateful people were understanding, but still used to many of those interactions or comments from people, even when seemingly genuine, to just be things people say to get through the moment, and not truly intentional. But we were shocked when about less than an hour later, a small delegation of three people from the service, who also were long time campers there, came to visit our trailer. My wife must have mentioned that we were the family in the Airstream, since ours is still a fairly unique sight among other trailer styles.

The two men and a woman came in and immediately my son came to happily greet them, and they were just as glad to see him, and shared how they were just checking on us to see how we were doing. They kept speaking out their faith to us by letting us know that whatever happened was no big deal, that we were welcome there and that we would always be welcomed no matter. We thanked them for their kindness in checking in on us, and how much it meant to us that people would go out of their to make sure we were included, and suddenly our small living space was bursting with the Holy Spirit.

That morning, we just didn’t escape a challenging situation in a public place, we were actually touched by the Body of Christ in a special and unique way, and the campground just earned visitors for life.

Written by John Felageller

John lives in Northbrook, IL with his wife Elizabeth and his son Christopher (ASD), and is currently a Social Programs Manager at Total Link 2 Community in Chicago, IL.  He is a regular contributor to Key Ministry’s Special Needs Family blog, and is both a live presenter and on Key Ministry’s Facebook page. He coordinates a Special Needs Dads meet-up in his community and works with several other local Special Needs organizations that serve both parents and children.

Connect with John on Facebook here.