Jonathan McGuire Jonathan McGuire

Hope In The Dark

In one of our workshops, I ask the participants what their breaking point is… Written by Jonathan McGuire

“My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.”  ~Psalms 73:26

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In one of our workshops, I ask the participants what their breaking point is and go on to share about a time when I had personally reached my breaking point. I had reached that point where the stressors of raising a child with special needs, dealing with my own health issues and other factors lead to that moment of brokenness.

I find myself reflecting back on this moment, as I am again struggling with health issues and hovering on the brink of exhaustion and vacillating between hopeful and overwhelmed as I consider all that needs to be done in so many  areas of life.

Do you know what I mean? As a parent and a caregiver, it is not uncommon to feel this way. You have so many stressors coming on you from what seems like every direction. Believe me, I get it.

I recently read the following from Craig Groeschel’s  You Version “Hope in the Dark” plan,

 “The world may seem upside down, but the Lord is still there.

When you have nowhere else to turn, when your own ideas and resources have evaporated, when your control over a situation is in shambles, God is still there. When your knees ache from kneeling in prayer but you can’t tell if he’s even listening, God is still there. 

No matter what happens in your life, the Lord is in his holy temple.”

The word pictures that Pastor Craig used so fittingly describe the parent’s journey in special needs and disabilities. Our worlds do often seem upside down, resources seem to evaporate before our eyes and it often seems like we have no control.

I love his conclusion though. God is still there.  

When your health fails, and your spirit grows weak, don’t give up. On those days when you don’t know how you are going to pay for specific therapies or house modifications, you don’t feel like you can face the stressors of the coming holidays or you are scared to think about your child’s future… Be encouraged, God is still there.

Written by Jonathan McGuire

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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.

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John Felageller John Felageller

OK, It's Safe to Cross Now

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. Written by John Felageller

“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)

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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

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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.

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Jonathan McGuire Jonathan McGuire

Rejoicing Vs. Grieving

If there was ever a verse in the Bible that I felt like taking the white out marker to, this at one point may have been right at the top of the list. Written by Jonathan McGuire

“Rejoice in the Lord always. I will say it again: Rejoice!”

~ Philippians 4:4

 

If there was ever a verse in the Bible that I felt like taking the white out marker to, this at one point may have been right at the top of the list. Let’s be real, when we are in the midst of a hard time this probably isn’t our go-to scripture passage. As a side note, if you are coming alongside someone who is struggling, this shouldn’t be your go-to scripture to encourage them.

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When we are struggling, we are often told to REJOICE as if that is an exclusive emotion and that we shouldn’t grieve the loss.

Did you know that you can feel multiple emotions at once?

At times, these emotions can even seem contradictory to each other. For example, we have the word, “bittersweet.”  Can you think of a time that was bittersweet to you? It might be the completion of a therapy but the loss of a therapist. It may have been the graduation of a child or when a friend had to move out of state for a job.

There is a focus that is often missed when a caring soul tells us to rejoice. The focus that is missed is, “in the Lord.” No matter how bad things get, I can look at my heavenly Father  and rejoice in who He is. I can rejoice in His character, His power, that even when it feels like we are alone…He never leaves us. I can rejoice that someday I will be with Him in heaven and the effects of a sin-cursed world will no longer wreak havoc on those I love.

While I am rejoicing in the Lord, I can still grieve a particular situation. I can grieve that milestone my child didn’t reach. I can grieve the therapist who left that they connected with. I can grieve the additional struggles and pain that my child may experience in life due to the effects of their disability.

In fact, we need to grieve those things.

There have been times when I have asked couples how they coped with various difficult situations in their journey through disability and they replied with they just chose to rejoice. I hate to be the bearer of bad news but that is just called denial. This is one of the official stages of grief and can last for a short period, for decades, or can come and go.

When we live in the land of denial and refuse to move forward in the grieving process, it will re-emerge eventually. It may re-emerge as negative emotions or even health issues.

If you find yourself in this place of grieving, don’t feel guilty or like it means that your faith isn’t strong. It is part of the journey and it is part of healing.

As I close, I want to encourage you to REJOICE…IN THE LORD. However, when you rejoice in the Lord, know that He is with you as you journey through the land of grief. 

What is one character trait of God that you can praise Him for today?

Written by Jonathan McGuire

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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.

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Laurisa Ballew Laurisa Ballew

A Note For The Brokenhearted

I keep waiting for it to get easier.  For the sting of this disease to ease. Written by Laurisa Ballew

I keep waiting for it to get easier.  For the sting of this disease to ease.

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One of my daughters is a sensitive soul. She feels things deeply. She will skin her knee and just cry so hard about it. (for a day. mmmkay?) And then in the days to come will continue to tell me it hurts, she will wince, guard it, and even weeks later she will point out the mostly healed spot and recount the pain of it. And try to con me into giving her another princess band-aid. I mostly ignore her- count it as drama. Because let’s be honest it partially is, but it is also how she is affected by pain. It really bothers her. And then with the next wound it is the same. Over and over again, she doesn’t seem to get much tougher.

And that is about how I feel about my child having Tuberous Sclerosis. There has been so much grieving with this disease.  I find myself waiting to settle into this being my life. To be content with this reality.  In some ways I have found peace with a lot of things. And in so many other ways the core of my being opposes these struggles head on. It makes me feel conflicted.  I want to walk this out peacefully. To find Joy in the crevices of my broken heart. To let life and love and experience pour out of its cracked places. But that is a hard things to do.

Sometimes I feel like I am the ‘about healed’, hardly visible skinned knee. You know when the scab is gone, but the new skin is just a darker shade? Not obvious to those around. But when I think I should be feeling better, a remembering-pain from the depths of my soul comes rushing forward. 

Time and time again I come back to this. If God cares about me even half as much as I care about my daughter, if he feels the pain of the deep wounds like I feel hers. If he mourns with me like I mourn with her. If he really is the Good God that I think he is, then a few things must be true

  1. I am not even slightly alone in my pain. There is a real, powerful God standing with me through all of this.

  2. The brokenness of this world was not God’s Plan, but he will work through it.  He has worked through it. He has sent His Son, and someday all the brokenness will be healed. My favorite children’s bible says this about Jesus coming back “Everything sad will come untrue. Even death is going to die! And he will wipe every tear from every eye. Yes, the rescuer will come. Look for him. Watch for him. Wait for him. HE WILL COME! I promise.” Just take a minute and let that wash over your broken heart.

My friends- There is no shame in broken places. Brokenness is the thread that connects us all. There is holiness in standing with each other in these moments.  

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Recently a friend shared with me a Japanese art form called Kintsugi. It is where value is still seen in brokenness. And broken pottery is fixed with a gold lacquer. 

The bowl is not useless because of its brokenness. Instead its brokenness is highlighted, seen as a part of its history, part of its beauty.

May these broken places in my life not shatter me. Or render me useless. But instead become a golden bond of character. Of strength. And beauty.

Peace and love to you dear friends as we stand together in the beauty of our broken.

Written by Laurisa Ballew

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Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all.  Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood

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Kevin O'Brien Kevin O'Brien

Asking Why

Every parent of an autistic child asks why. Why did this happen to my child? Why did this happen to me? Why is my child acting this way? Why can’t I have one normal day? Why, God? Why? Written by Kevin O’Brien

I have always been a firm believer in starting with why. I think that it’s the most fundamental human question and far too often we simply drift through life trying to keep ourselves busy or amused or whatever just so we don’t have to face that question.  

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Every parent of an autistic child asks why. Why did this happen to my child? Why did this happen to me? Why is my child acting this way? Why can’t I have one normal day? Why, God? Why? (With alternating exasperation and rage, I find.)

I wish I had a good answer. I don’t. But then I am not a finished product yet, and neither is my autistic son. Sometimes there simply isn’t a why, at least not one we can get to in the here and now.

In my self-pitying moments I wonder if God ever asks himself why about us. I have multiple theological degrees. I can give you the arguments and the clichés about God not being surprised by the dumb things that we do.

But then I think about Matthew’s account of Jesus on the cross and that most disturbing question: “About three in the afternoon Jesus cried out in a loud voice, ‘Eli, Eli, lema sabachthani?’ (which means ‘My God, my God, why have you forsaken me?’)” (Matthew 27:46, NIV).

Jesus asks why. He knows the answer. That’s not the point. The point is that God himself, the second person of the Trinity, knows such extreme agony, such extreme suffering that he calls out, “WHY?!” to the Father.

For most of us, when it comes to our kids, when it comes to the pain in our spouses and all of the lost hopes and dreams, “why” is less about a good reason than it is a demand that this all matters somehow, that it means something. To be sure, we would like reasons too.

I am learning to come at why from new angles. And I am learning that sometimes why is less important than I thought. Sometimes you need to get in there and do even when you don’t have all of the right answers or even half of the information that you feel like you need.

As much as I want it, Nate can’t give me a why. He can’t explain it. And he gives few clues to figure it out. And that is perhaps the hardest part. Sometimes you have to break things down into component parts to figure out how they fit together, to get to why. I would have never thought that years of oil and sawdust and hammers and wrenches and watching my father tear apart cars and rebuild garage doors from scratch—and well, a hundred other things I don’t remember—would help me to understand my son. I never would have thought that it might take a son with autism to jump-start me from being paralyzed by why and start doing something.

Jesus asked the Father why.

The answer was us—was me.

Which means that He is with us through all of our whys.

 

Adapted from the chapter “Why Versus What” in Life on the Spectrum.

Written by Kevin O’Brien

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Kevin O’Brien is a freelance writer and marketing consultant living in the far western suburbs of Chicago with his wife, 3 children, a dog, and a cat. Kevin’s middle son, Nathan, is autistic. He is a contributing author to Life on the Spectrum, a book to encourage and inspire parents and caregivers of children with autism, by parents of children on the autism spectrum  An ordained minister and veteran of the Christian publishing industry, he has helped develop, write content for, launch and market several Bibles. Kevin loves to learn new things, and would prefer to spend his time reading, speaking, writing, woodworking and watching the Chicago Blackhawks. He occasionally tweets @kevinrobrienthm and can be found online at www.treadingthedawn.com .

As an Amazon Associate, Hope Anew earns from qualifying purchases.

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Jonathan McGuire Jonathan McGuire

When Things Don't Go As Planned

It was one of those mornings. Our car was in the shop. The evening before, they called to let me know it was ready to be picked up. Written by Jonathan McGuire

It was one of those mornings. Our car was in the shop. The evening before, they called to let me know it was ready to be picked up. When they called, I asked, “Were there any other issues?” They promptly replied, “No,” and I went to pick it up the next morning, excited that we would have our car back. Twenty minutes later, as I neared home, I noticed a sound like driving over rumble strips on the side of the road, only there were no rumble strips so back to the repair shop I went.

 It would have been easy for me to turn the drive back to the repair shop into a pity party, grow angry with them for not catching the problem and to get upset about the time I had lost.

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Instead, I had to consciously choose to reframe the situation. Through this process I was able to praise God that:

  1. The problem occurred immediately so it was not a mystery what the issue was.

  2. It didn’t happen in the upcoming weeks as we traveled for different speaking engagements.

  3. Family was loaning us a vehicle so we were not stranded.

  4. The shop was ethical and told me to bring the car back in immediately for them to look at it.

As I processed this, I felt the tension reduce. I was able to arrive at the shop and talk with the manager in a way that was glorifying to God as opposed to my  natural response in the situation.

While I was stressed about how the delay in schedule would impact the rest of my day, I didn’t carry the tension of anger, bitterness and resentment with me boiling under the surface, building up pressure until it exploded and later burned an innocent bystander.

This reframing is a difficult process, requires the help of the Holy Spirit and I have to take it moment by moment. In all truth, my success rate is not real high but God is gracious and it’s exciting to see growth…as incremental as it may be.

What do you have going on right now that you can reframe? Are you battling the school for services your child needs? Is there a therapy or service you want for your child, but can’t access because of the expense? Are you discouraged from constant caregiving? How would it impact  you emotionally, mentally, physically  and spiritually if you were able to reframe that situation?

“And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise.”

Philippians 4:8 (NLT)

Written by Jonathan McGuire

 

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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.

 

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John Felageller John Felageller

You Can Worship How You Want

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. Written by John Felageller


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     “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

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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.

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Sarah McGuire Sarah McGuire

15 Scriptures For Overcoming Lies, Fears And Doubts

When we go through dark, lonely times it’s easy for our thinking to get cloudy, to forget the things we know, and to get confused. It’s easy to start believing lies instead of truth. Written by Sarah McGuire

When we go through dark, lonely times it’s easy for our thinking to get cloudy, to forget the things we know, and to get confused. It’s easy to start believing lies instead of truth.

~ Sarah McGuire

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During my doubting, fighting-daily-for-faith years, I started a list of thoughts I struggled with and Bible verses that I could go to in order to combat those lies or struggles. This was nothing formal or beautifully done, just a long, narrow sheet of paper torn from my magnetic grocery list pad.

When I came across a verse that spoke to me and could help with a thought I struggled with, I’d jot down the thought and the coordinating verse reference. I left it in my Bible so it was handy to add to it. As it grew over months and years, I had my own personalized list of lie-combatting, confusion-clearing, truth-telling, uplifting Scriptures.

Here is my list, maybe you struggle with some of the same thoughts I did and you’ll find some of these helpful. Some were quite personal and aren’t normally references I would associate the with topic, but the day I read them, it was clear God’s Holy Spirit was speaking it to me, so I put it on my list.

  1. I am valuable – Mt. 10: 30-31; Isa 43:4; Zeph 3:17

  2. It’s more than I can bear. I can’t do it (overwhelmed, inadequate, worn out) – Zech 4:6, Deut 31:8, Ps 37:5, 2 Cor 1:8-9, Isa 43:2

  3. God may not watch out for me in this situation – Haggai 2:19, 23

  4. Troubled, worried, stressed – John 14:1

  5. Overwhelmed by evil or suffering – Phil 4:8

  6. In need of help – Isa 30:18

  7. God has forgotten me – Isa 40:27, Isa 49:14-16

  8. If I seek God, I’ll find God – Isa 65:24

  9. God isn’t in charge of this world – Daniel 4:17, 25, 32

  10. Worried about needs – Mt 6: 33, Rom 8:32, Isa 65:24, Phil 4:19

  11. God always hears me – Jn 11:41, 42

  12. Not sure what to do – Ps 32:8

  13. I’m broken – 2 Cor 1:8-9

  14. God isn’t listening or acting – Mt 6:8, 2 Chron 7:14, Lk 11:9, 10

  15. It’s useless to pray – James 5:16

None of us are perfectly the same. Satan is good at finding our vulnerable spots and the lies that will have the greatest power in our lives. I encourage you to start your own list and let God speak His truth into your life.

Written by Sarah McGuire

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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!

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Jenn Soehnlin Jenn Soehnlin

3 Ways To Focus On How Our Children Are Fearfully and Wonderfully Made

We love our children fiercely. We would do anything to care for them and provide for all their additional needs. Though our children can feel like our whole world, there are also times it is easy to wish things were different for them. Written by Jenn Soehnlin

We love our children fiercely. We would do anything to care for them and provide for all their additional needs. Though our children can feel like our whole world, there are also times it is easy to wish things were different for them. To compare them to other children and wish things came easier. To focus on their health and their weaknesses and struggles and additional needs. To feel like there’s no end to the tunnel of appointments and accommodations and needs our children will have. And we lose sight of the fact that our child is “fearfully and wonderfully made” (Psalm 139:14).

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It has taken me years of parenting two children with special needs to stop focusing so much on their delays and differences and weaknesses and instead focus on just how uniquely and beautifully God made them.

It’s a mindset shift I’m still working on today, but one that has helped my heart immensely. It has allowed me to enjoy my children more and to be proud to be their mother. There are three ways in particular that have helped me focus on my children more like I imagine God does. 

First – Focus on Your Child’s Victories

It’s so easy to see how far our child has to go to catch up with their peers. To see how slow the progress can be sometimes. But we have to be intentional to focus on the positive. To focus on each and every victory, no matter how small it may seem.  

In the Genesis account of God creating the world, He said “it was good,” after everything He created. He didn’t just say “it was good,” when it was all done. We must do that too. Celebrate every milestone and every hard-fought inch in-between. After all, they are all victories and all deserve celebration. 

And we shouldn’t just celebrate those developmental victories, but spiritual ones as well. When you see your child exhibiting any of the fruit of the Spirit, praise and celebrate that. When you see your child grasp a deeper understanding of God’s love for them, celebrate that. 

I’m sure God is celebrating right along with us. He knows how hard our children have worked on each and every skill and He cares about the things we care about. 

Reflection: What are some of the latest victories you’ve seen in your child(ren)?

Second – Focus on Your Child’s Heart

“But the Lord said to Samuel, “Do not consider his appearance or his height, for I have rejected him. The Lord does not look at the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart,” (1 Samuel 16:7).

While Jesse didn’t think his youngest son looked like a king, and in fact didn’t even have David come in from tending the sheep to present to Jesse to be a future king, David’s heart was the one that God knew was right for the job.

It is easy to focus on our children’s outward appearance, their development, their health, their behaviors, and their struggles, and not on their heart. To not focus on those personality traits and strengths and gifts and passions that are unique to them. To not see the fruit of the spirit they exhibit in their lives. To not see how they give and receive love. To not see and nurture those deeper aspects of who they are that makes them so unique, so wonderful, and such a blessing to our lives.

Reflection: In what ways do you focus more on your child’s outward appearance than you do their heart? What can you do to show your child(ren) how much you love their heart?

Third – Focus on Your Child’s Gifts and Passions

In Exodus 31:1-6 God tells Moses about how He designed and gifted Bezalei. God says “I have filled him with the Spirit of God, with skill, ability and knowledge in all kinds of crafts-to make artistic designs for work in gold, silver and bronze, to cut and set stones, to work in wood, and to engage in all kinds of craftsmanship.” You can sense the pride in God’s voice as He brags about Bezalei using his gifts and skills. This was the man that God had chosen to build His holy tabernacle, where God’s presence would reside. 

When you have a child with special needs, it’s easy to want to focus on the areas they need to improve, rather than focus on their strengths and passions and giftings. Our children have gifts and talents that God wants us to help nurture and steward in our children.

They have something awesome to offer the kingdom of God too. And we have the honor of coming alongside them and helping them identify and use and grow their gifts and skills and passions.

 Reflection: What are some of your child(ren)’s gifts and passions?

What can you do to nurture those gifts and passions? 

*    * *

It’s an intentional mindset shift, choosing to focus on these aspects of our children when it can be so easy to focus on other things. But by choosing to focus on seeing our children as God does, it will help you find the beauty in the way God uniquely, fearfully, and wonderfully crafted your child(ren). 

Reflection: Which of these ways do you find easiest to focus on your child(ren)?

Which ways do you want to be more intentional in focusing on your child(ren) like God does?

Written by Jenn Soehnlin

 

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Jenn Soehnlin is the mother of two young boys who are precious blessings and who both have special needs. She is the author of Embracing This Special Life: Learning to Flourish as a Mother of a Child with Special Needs.

Jenn enjoys blogging about faith, praying scripture, and special needs parenting at www.embracing.life


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Sarah McGuire Sarah McGuire

When Our Faith Falters We Need Faith-filled Friends

There were times I couldn’t muster the faith I knew I needed. I wanted to have faith. I wanted to trust God. But, I didn’t. Written by Sarah McGuire

If you read You Are Not Alone, you know that I had some significant struggles with questions about God and my faith. There were times I couldn’t muster the faith I knew I needed. I wanted to have faith. I wanted to trust God. But, I didn’t.

Yes, I trusted Him for my eternal salvation, but I didn’t trust Him for how my daily life was unfolding. I felt ashamed. I knew where I wanted to be – at peace and rest in His arms, not worrying about the things of daily life, because He’s got this! But I couldn’t seem to get there on my own.

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I claimed,I walk by faith and not by sight” and said it a hundred times per day some days. Reminding myself that walking by faith doesn’t mean everything works out or makes sense, yet I could trust God anyway. He has a plan. But in reality, I felt more like, “I stumble blindly.” Period. The end. 

This bring me to Mark 2: 1-12. Jesus is preaching at a house and so many people come to see him there’s no more room, not even outside the door.  

You’ve been there, right? An 18-year waiting list for services your child needs. A doctor or therapy that might help, but it’s too expensive and insurance doesn’t cover it. You need rest SO badly but can’t access respite services. There’s help in view, but you can’t get to it.

Back to Mark 2. A paralyzed man arrives carried on a mat by four men. He couldn’t get to Jesus on his own, so four people carried him! I don’t know how it came about, maybe he asked them to carry him or maybe he protested the whole way, “Put me down. I don’t want to be a bother. I’ll be such an inconvenience.” We don’t know. 

They arrived to find the house where Jesus was filled to overflowing. Did his helpers stop there? No. They made a hole through the roof and lowered the man down right in front of Jesus. “Seeing their faith Jesus said to the paralyzed man, ‘My child, your sins are forgiven.’” Because of the religious teachers who were present and their thinking that was a blasphemous statement, Jesus went on to heal the man physically as well!

The phrase that stands out to me in this recounting is, “Seeing their faith…”. “Their,” plural, not “the man’s” or “his” faith, but “their faith”. Whether this indicates all five of them or not, I don’t know. But it does refer to more than one of them. Whether it applies to the man who was paralyzed or only to his helpers, I do not know.  

What I do know is that the faith of the man’s helpers played a substantial part in the man being forgiven of his sins and physically healed. Sometimes, when our faith is weak, we need to depend on the faith of those around us. We need to let their faith carry us for a time.

Do you have faithful friends who can speak words of encouraging truth, said with grace, to you? Do you have friends around you, who, when you struggle in your faith, can pick you up on your mat and carry you where you need to go? That is what Christian community is all about! If you don’t have that or don’t have enough of that, come check out the Hope Anew Online Community and let’s walk this parenting kids with disabilities journey together!

Written by Sarah McGuire

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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!

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Sarah McGuire Sarah McGuire

You Are Not Alone – Join a Group that “Gets It!”

A friend looked at me and said, “Your whole faith foundation is shaking, as if you have no firm ground to stand on, isn’t it?” Written by Sarah McGuire

A friend looked at me and said, “Your whole faith foundation is shaking, as if you have no firm ground to stand on, isn’t it?” She’s the only one who knew and I hadn’t told her. I was so fearful others would find out I was questioning God and the very building blocks of my faith in Him. I was so ashamed I had these questions and doubts. My relationship with God had been my entire life. It had shaped my education, life goals, and daily rhythms. And now, I didn’t know what was true anymore.

Oh, I knew the book answers. I had graduated top of my class with a B.A. in Bible/Theology and another with a M.A. in Biblical Counseling. I went to a good Bible-teaching church, but it wasn’t meeting me where I was at. It didn’t get to the practical daily life questions that had become my struggle in the two years since my son with additional needs had been born and my world had flipped upside down. I felt so alone. Alone with my questions. Big, deep, scary God-questions. Doubts. Fears. Struggles. Life circumstances with no apparent answers. No way out.

My friend promised to pray for me, no judgement, just loving concern. That’s the best response she could have given. My questions were so deep that quick, simple answers were not going to solve them. It’s been over ten years since that conversation. I spent many of those years wrestling with God. I’ve found the answers to my faith questions and my relationship with God is stronger and truer than it was before.

As my husband, Jonathan, and I have talked with other parents of kids with disabilities or special needs, we’ve learned that I was definitely not alone with my questions and struggles. Questions and struggles not only in relation to God, but also in relation to how to navigate this life as a parent with a child who has additional needs. But, who do we go to with our questions? Who do we go to for support on days when life is overwhelming and often others just don’t “get it”?

Hope Anew is launching an online community for parents of kids with disabilities or special needs. A laugh together, cry together, pray together community.  

  • Some features of the community include:

  • Forums/Chat room

  • Subgroups for more specific areas of interest (residential care, adoption, etc)

  • Quarterly master classes

  • Soul Care events with sharing and prayer

  • Answers to questions that can’t be googled

  • Monthly themes related to parenting kids with additional needs

  • And more…

Come join us in the Hope Anew Online Community, where together we are building the most encouraging, real, hope-filled way for parents of children (of all ages) impacted by disabilities or special needs to engage with a group that “gets it!”

For more information go to www.HopeAnew.com. You can also find us on Facebook and can glean from others who have walked this path on the Hope Anew Disability Podcast.

Written by Sarah McGuire

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Sarah McGuire  is the Mom of two boys and 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. You can also check out Hope Anew’s Online Community here!

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Laurisa Ballew Laurisa Ballew

Preaching The Gospel To Yourself

As parents of children with special needs we all have been on the receiving end of biblical clichés that often hurt more than they do good. Written by Laurisa Ballew

As parents of children with special needs we all have been on the receiving end of biblical clichés that often hurt more than they do good. They come from well-meaning individuals, but instead of sweet promises that the Bible holds, they feel like heavy words. Words that often leave us feeling guilty or less than enough. “God will not give you more than you can handle” is one of my favorite phrases to hate. While I do believe this is true when it comes to TEMPTATION like the verse says in context, this doesn’t apply to the children that we have been given.

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My daughter is often more than I am capable of handling. Caring for her in the way she needs is way beyond my abilities, and I am constantly falling short. So this verse, if I took it the way people say it, makes me feel like I just need to do better, since it implies I can handle it since God gave it to me.

 In 2 Corinthians 12 God says, “My grace is sufficient for you, my power made perfect in weakness. Therefore, I will boast all the more in my weaknesses so that Christ’s power may rest on me.”  THIS is GOOD NEWS! And the better news is that the bible is FULL of these life-giving promises.

When I was a newly married women I had a friend from church who presented the idea of “preaching the gospel to yourself.” I was going through a hard time and so it was something I started practicing. It is a pretty simple tool I have used over the years to keep myself rooted in what the bible ACTUALLY SAYS and to remained encouraged even in the hardest of times.

So how do we preach the Gospel to ourselves? I start by sitting down with my Bible and a notebook. Then, I go through a few passages and simply write out the promises held in it. This is really easily done in Psalms, but it truly works anywhere you are reading. The point is being intentional about writing these passages out and having them to fall back on when the hard times come.

 For the purpose of this blog I decided to use a Psalm to pull a few promises from.

Psalm 9.

9- The Lord is a refuge for the oppressed, a stronghold in times of trouble.

10- Those who know your name trust in you, for you Lord have never forsaken those who seek you.

12- He does not ignore the cries of the afflicted.

16- The Lord is known by his acts of Justice.

18- God will never forget the needy; the hope of the afflicted will never perish.

 

In living this “Chronic Life” we must be firmly rooted in Christ. Discouragement is real, and ready to become a true thorn in our sides.  Taking a few minutes daily to ground ourselves and remind ourselves who God is, and what His word says, helps remind us we are not alone in the brokenness of the world.

Written by Laurisa Ballew

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Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all.  Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood

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Sarah McGuire Sarah McGuire

When I Am Not Enough

When I think back on the hardest days and years of our son’s journey, I recall wanting God’s help, expecting His help, waiting for His help while all the time trying to solve all the problems and carry all the burdens on my own. Written by Sarah McGuire

This morning my Bible reading found me in Psalm 34. I sometimes will read a Psalm and circle the attributes or roles of God that I see throughout the Psalm and note it in the margin. I don’t do this every time I read the Bible, but that’s what I was doing this morning. I’m only 34 chapters into Psalms, but as I’m sure you could guess, the same ones keep popping up again and again. Some of the most common themes so far are: helper, rescuer, defender, protector, fortress, refuge, guide, strength, unfailing love, holy, trustworthy, faithful, compassion, ruler, judge, and more.

 Today, as I was reading, something stood out that hadn’t stood out to me so far in my Psalm reading. Let me quote a few parts and see if you pick up on it too.

“I prayed…he answered…he freed.” v. 4

“Those who look to him for help will be radiant with joy;” v. 5

“I prayed, and the LORD listened; he saved…” v. 6

“Those who trust in the LORD will lack no good thing.” v. 10

“The LORD hears his people when they call to him for help. He rescues…” v. 17

“No one who takes refuge in him will be condemned.” v. 22

In each of these, it is the individual who goes to God first, “I prayed” “…who look to him.” “…when they call to him…” “…who takes refuge in him…”, before the need is heard, the rescue is realized, the freedom given, the fears allayed, the joy radiating, the condemnation averted. 

God didn’t step in and say, “I see this is a problem, let me take care of that for you.” No, He waited for the person to bring it to Him in prayer, look to Him for help, trust Him, or take refuge in Him.

That last one, “…takes refuge in Him…” brought to mind the verse “The name of the LORD is a strong tower, the righteous run into it and they are saved” Ps. 18:10. I got a little cartoon video in my head of a medieval stone tower running to cover and shelter a person and how silly that would be. No, the person (a soldier in the cartoon video in my head) chooses to run to the tower for safety.

When I think back on the hardest days and years of our son’s journey, I recall wanting God’s help, expecting His help, waiting for His help while all the time trying to solve all the problems and carry all the burdens on my own. I don’t remember asking for His help or moving to Him for His help and shelter until I completely exhausted myself and physically broke. I very distinctly remember asking for His help that day and the days following, when I was at the end of myself.  

God doesn’t always answer right away and He may not always answer in the way we want things to be answered. But, sometimes, He’s just waiting for us to come to the end of ourselves and to look to Him.

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Sarah McGuire  is the Mom of two boys and 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 is launching a new online community October 1! You can check it out at www.HopeAnew.com.

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Cathy Porter Cathy Porter

Should We Do ‘Chores’?

For many years now we have not had ‘chore charts’ or lists in our house. I don’t know what your experience is like but we found that when our oldest two reached an age where ‘chores’ seemed appropriate we did the right thing, we made a list, had a reward system in place and sat back to watch as skills, confidence, independence and a sense of team blossomed! We were brought down to earth with a bump fairly quickly. Written by Cathy Porter

For many years now we have not had ‘chore charts’ or lists in our house. I don’t know what your experience is like but we found that when our oldest two reached an age where ‘chores’ seemed appropriate we did the right thing, we made a list, had a reward system in place and sat back to watch as skills, confidence, independence and a sense of team blossomed! We were brought down to earth with a bump fairly quickly.

For us chore lists became battle grounds, and what seemed to blossom was resentment, feelings of failure and comparisons. ‘I did mine on time, she didn’t – how come she gets the reward too?’ ‘His were easier than mine, and he had less homework – it’s not fair!’ ‘But you always help them, you don’t help me!’…

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We persevered for a bit but in the end we quit. Chore lists were certainly not promoting team effort, or a sense of interdependence. I’m not sure any new skills were gained by any of us. And the experience gave none of us more confidence – personally or in our parenting abilities!

But I find myself here again, should we do ‘chores’? Our youngest is now nearly 9 and because of our last attempt she has rarely ever seen a chore list stuck to the fridge – but there are definitely now skills that she has to offer to help family life run well.

She’s great at making a bed for example – if reminded, and in the mood. She can help unload the dishwasher, wipe clean a table, and feed the animals. So should we try again? Am I letting her down if we don’t – aren’t chores an important part of learning responsibility and seeing we’re all part of a team?

It’s a difficult one – I don’t want battles, or resentment – we have more than enough of both of those as it is. So is there another way to develop skills and a sense of team work in family life without that being the result? I was reading around and came across ‘family contributions’ as an alternative approach. Still based on doing age (and ability) appropriate jobs around the house but rather than chore then reward, the focus is more on recognizing (and hopefully growing) what each person in the family contributes.

I like the concept. It is less like a duty or a rule which suggests the need for visible fairness and more like an attitude in mutual gratitude. This may have something going for it. There feels already to be more room to value different abilities – it didn’t seem fair to have very obviously different types of chores being equated on a reward chart side by side. Maybe there is more to be learnt using this concept – not just a sense of responsibility to do a duty but also in each doing what we can do well and being noticed maybe we will learn to value each other’s abilities that bit more. That can only be a good thing.

One thing our family life is very good at is reminding me daily that none of us can do everything, but we are all good at some things. Our abilities and strengths need praising and encouraging in family life, especially in a world which often praises such a narrow selection of abilities and talents.

I am willing to give it a try, there are plenty of printable examples out there that I could adapt to match our particular family and our abilities, and I’ll introduce it very, very, gently. Small steps. And lots of celebration over the offered contributions of everyone, however different, however seemingly small, or how often they are offered!

Written by Cathy Porter

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Cathy Porter is  a disciple of Jesus, a mum, ordained and a vicar's wife (in the Church of England), a writer, a creative, a blogger.


Cathy and her husband, Andrew, have 3 children. Her two girls both a diagnosis of ASC. You can follow the ups and downs of family life & faith on her blog: www.clearlynurturing.wordpress.com.

It is Cathy’s heart to encourage families to share in the adventure of faith together, especially families beautifully shaped by ASC. She loves to write stories that make the reader think, ask questions about what we believe, and help the reader to discover what the Bible has to say about God and friendship with him.

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Jonathan McGuire Jonathan McGuire

Diagnosis, A Defining Moment

I remember the moment perfectly. I was a counselor and was at a Burger King with a client when I heard the news about the planes hitting the twin towers in New York.  The rest of that day, my role was to help my clients process their own fears as the news unfolded. Written by Jonathan McGuire

I remember the moment perfectly. I was a counselor and was at a Burger King with a client when I heard the news about the planes hitting the twin towers in New York.  The rest of that day, my role was to help my clients process their own fears as the news unfolded.  Coming alongside the student who had hidden under his desk and was scared to come out and checking in with the rest of my families to see how they were doing.

There was a unification in our country as we mourned with the families impacted and we wanted justice. There was a time when it was no longer taboo to talk about God and how He comes alongside us.

The pain has faded for many and except for a posters on 9/11 saying “We Will Remember”, life has returned to normal for those who were not directly impacted.

 

 
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 For those of us with a child impacted by disability, there is another date that is cemented in our minds. We each have our own twin towers moment. That moment when our world came crashing down. My twin towers moment began with Sarah telling me, “I think our son has autism.” The rest of the conversation is a bit of a blur to me as she walked me through why she thought Jordan was autistic but I do remember the emotions.

I remember being flooded with denial and thinking that she was over-reacting and must be wrong. I remember the fear of the unknown and what it would mean for his future. I remember the feelings of being overwhelmed and the sadness that came with wondering if Sarah was right.

 After Sarah shared this with me, I went into work the next morning and sat down in the office of a trusted colleague who had a grandson that was diagnosed with autism. When he asked how I was, the first words out of my mouth were, “Sarah thinks Jordan has autism.” We talked, he listened and I went back to work grieving and eventually building a new normal, and a new dream.

If you and I were to sit down together, I bet you could tell me exactly when your child was diagnosed, where you were and how you felt. You could tell me what life has been like since then and about the people who were there for you in the beginning and who it is that still comes alongside you.  

You may still get a sense of anxiety and panic as you are in situations that bring back those memories. You may still be in that place of grieving and asking God those hard questions. That’s okay. Someday, you will be able to dream a different dream too.

Healing will come but we will always remember.  

“I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.”

 Ephesians 3:16-19 (NIV)

Written by Jonathan McGuire

 

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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.

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John Felageller John Felageller

Can We Play?

 This past Labor Day Weekend, while my wife was busily preparing for the start of her teaching year, I had my son all to myself for a Saturday afternoon. Written by John Felageller

“...Truly, I say to you, unless you turn and become like children, you will never enter the kingdom of heaven.”  (Matt. 18:3, ESV)

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This past Labor Day Weekend, while my wife was busily preparing for the start of her teaching year, I had my son all to myself for a Saturday afternoon. The weather was nice and we had all the time we wanted, so I decided to take him to a playground designed for Special Needs Children in a suburb about an hour drive from us. I had seen postings from other parents on social media about this park, and after looking at a bunch of the pictures shown, I thought it was perfect. What made the park unique was that all of the playground equipment had been designed to be adaptable for any type of physical disability. There were ramps on the climbing equipment, adaptive swings on zip-lines, adaptive seesaws with actual seats, and the entire surface was soft rubber.

Although I was excited to bring my son here, I admittedly had some anxiety as I usually do when bringing him to any playground, especially a new one. My son, of course, has autism, is non verbal, and has a sensory disorder to the point where he constantly seeks input, frequently banging on slides or other equipment. This of course means that he usually gets looks from the kids around him, even the littlest ones, and many times kids will just keep their distance from him. While he doesn’t seem to mind, and now being eleven we have become used to many of these experiences, my heart still breaks a little any time we have an “encounter” at the park. I certainly hoped that this park, being designed with Special Needs in mind, would be a welcoming environment.

I just wanted to bring my son to an outdoor space where he could just be himself and I could not only be more comfortable with him physically safe, but also with being emotionally safe.


When we arrived, I noticed there were only a few cars in the lot, and therefore it was not busy, which is a welcome sign since that means less kids to have a bad interaction with. Upon walking into the playground I was more than pleasantly surprised with the layout and the equipment, and was glad to see other special needs kids both younger ones and adolescents enjoying the park.

It didn’t take long for my son to come into the space of a teenage girl on one of the equipment ramps, and while he kept his distance, the mom of the girl started chatting with me. She wasn’t judgmental or puzzled, she had a smile on her face as she engaged me with friendly conversation about my son and his condition. I shared about his autism and communication issues, she shared that her daughter had Angelman’s syndrome, and was also non verbal, though like my son had some limited speech. We both commented on how grateful we were for the park and how great it was that something like this existed, and there was just a sense of acceptance that I really don’t get to experience much. 

After my son got visibly tired out and too hot to keep playing, we made our way out of the playground and back to the car, taking our leisurely drive back home, having had a wonderful time playing. That was the whole miracle of this afternoon, the fact that my son was welcomed, without condition, by total strangers, who didn’t just tolerate him, they accepted him, and wanted him to feel like he belonged. This was our little slice of heaven for the day, a place where my child could be a child, play and be himself, and while I watched I noticed my heart heal itself just a little bit that day.

Written by John Felageller

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John lives in Northbrook, IL with his wife Elizabeth and his son Christopher (ASD), and is currently an Elementary Teacher at a Charter School 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.

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Jonathan McGuire Jonathan McGuire

A Mentor During Hard Times

Have you ever had those “ah ha” moments? Sometimes they are that one piece that helps everything else fit together and sometimes they are so obvious that you don’t know why you didn’t think of it before. Written by Jonathan McGuire

Have you ever had those “ah ha” moments? Sometimes they are that one piece that helps everything else fit together and sometimes they are so obvious that you don’t know why you didn’t think of it before.

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I was helping our youngest son fill out a form for an online contest, when I had just such an “ah ha” moment.  One of the questions on the form asked him who he considered to be a mentor of his. He went through the obvious answers of his grandparents, his mom and his dad. Frankly, I was excited to see that I still made the list. It was his last answer that surprised me and made me think. The answer was God/the Holy Spirit.

At first, I wanted to say that he couldn’t say that. I wanted to tell him that wasn’t what the question meant. It reminded me of the old joke where a Sunday school teacher would ask the students a question and the students would always give the answer of “Jesus.”  It didn’t matter what the question was.

After we talked, our son reminded me who our God, specifically the Holy Spirit is. He is always with us and He helps us in understanding God’s word. He convicts us. He teaches us.  

The definition of a mentor is an experienced and trusted advisor. Synonyms are a guide, confidant, counselor, spiritual leader, and therapist. For those of us, who have a relationship with Christ, the word “mentor” so wonderfully describes who the Holy Spirit is to us.   

As followers of Christ, the Holy Spirit  is our mentor, our counselor, our comforter, our guide, our confidant who lives within us (Romans 8:9).  

Do you ever get stuck in those moments of wanting to give up? Do you ever feel like you are alone in this journey and like a complete failure? Perhaps you are struggling with God, His promises and wondering why He would ever allow your child to struggle with the pain they are experiencing. Maybe you are in the process of making some difficult decision and you feel like it’s a no win situation.  

We often go through life, trying to make it day to day on our own. There is a feeling that we should be able to “pull ourselves up by our bootstraps.”  Our pain is so deep and vulnerable that we don’t dare open up to those who are close to us but keep it buried somewhere.

In those moments, remember that if you are a follower of Christ, you have a mentor, a counselor, a comforter and a guide.  You have someone that knows your fears, your feelings of guilt, and the depths of your struggles. You have someone that will guide you to the truth, and our hope.

Written by Jonathan McGuire

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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.

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Deb Abbs Deb Abbs

The Other R Word

We dropped Luke off at the Monarch Boarding Academy on August 9th, 2018. It was one of the few times, in our 25 year marriage, I’ve seen my husband break down. Written by Deb Abbs

We dropped Luke off at the Monarch Boarding Academy on August 9th, 2018. It was one of the few times, in our 25 year marriage, I’ve seen my husband break down.

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I did too but that was nothing new. I’d been crying daily for a few months thinking about Luke not living at home with us. Caring for Luke, who has autism, has been my main job for 14 years. He has been my most constant companion.

After I had a serious injury during one of Luke’s meltdowns our school district suggested last winter that we consider visiting residential schools. I was hoping and praying to at least find a good option close to home. Then Luke could keep attending Giant Steps, a private day program he has gone to since the end of kindergarten. His wonderful teacher, assistants, and other therapists loved him and didn’t want to see him go.

Mostly, though, I told my husband (a very tough, caring guy who serves as a police LT. and therefore can’t always be with us) even if it meant being home bound or getting hurt again I wanted Luke home with us.

I knew someday FAR OFF we would need to figure out a good living situation for him but he is only 14.

Over the last few months the Lord has shown us bringing Luke to Monarch Center for Autism is His will in a variety of ways, but it is still gut wrenching; the hardest thing I’ve ever done.

On the long car ride home after leaving Luke, I felt torn up, raw, sad and guilty. During the 30 day transition time we couldn’t visit Luke but when we called or Skyped he seemed to be doing much better than me. I am very thankful for that.

Something making this whole transition even tougher is the feeling that I don’t fit into my special needs world like I have for the past decade. While so many of our friends, with and without children who have special needs, have been extremely supportive I have gotten comments that tear me up inside.

Heck, I’m sure I have said, or at least thought some of the comments myself.

Hearing “I would NEVER do that to my child” from another parent of someone with special needs crushed me. It seems to me that RESIDENTIAL is the other R word. Or at the very least something too scary to think or talk about.

The week after we brought Luke to his new home, we brought our 18-year-old, Brandon, to college. It was tough saying good-bye and leaving him but a whole different experience. The college had a ceremony for new students and their parents to celebrate the new beginning and give time to say good-bye. At Augustana College’s orientation a few months ago a speaker for the parents discussed how we might be feeling and gave us some tips for letting go. These things didn’t happen for us with Luke, although the staff at Monarch have been kind and helpful.

My great comfort is knowing how much God loves Luke and how He has used him in people’s lives in the past. In my good moments I pray for my boy to keep knowing Jesus’ love and showing that love to others at his new home and school. Heck, right now both Luke and Brandon are missionaries at their respective schools!

Written by Deb Abbs

We (Hope Anew) are starting an online community October 1, including a group for those families whose loved ones with special needs live apart from them. We would love to have you join!

 

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Read more from Deborah Abbs and others in Life on the Spectrum. To learn more follow us on our FB page Life on the Spectrum Book.

Because no two people with autism are the same, Life on the Spectrum’s authors all bring their unique perspective and experiences to the table. Our honest, raw and heartfelt stories show how God is at work in the real-world struggles of families impacted by autism.  Come on the journey with us!

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Podcast Teaser Jonathan McGuire Podcast Teaser Jonathan McGuire

Reframing Life

In this snippet from the Hope Anew Disability Podcast, Colleen Swindoll Thompson shares how our lives can resemble a HGTV Home Remodeling Show.

Check out the entire interview on September 2nd!

In this snippet from our September 2, 2019 Hope Anew Disability Podcast, Colleen Swindoll Thompson shares how our lives can resemble a HGTV Home Remodeling Show.

 
 
 

As an Amazon Associate, Hope Anew earns from qualifying purchases.

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Cathy Porter Cathy Porter

Beauty In The Ordinary

It never ceases to amaze me just how tiring and intense our family life can be, especially if I’m honest when school term is over and everyone has time off. All around us friends and family are heading off excitedly on holidays together – and we also head off, but perhaps with a more complex set of emotions than simple excitement. Written by Cathy Porter

It never ceases to amaze me just how tiring and intense our family life can be, especially if I’m honest when school term is over and everyone has time off. All around us friends and family are heading off excitedly on holidays together – and we also head off, but perhaps with a more complex set of emotions than simple excitement.

Out of routine children in unfamiliar places can be a challenge! Just thinking about the extra energy needed to get us there, and survive the experience makes me tired in itself! You know how it is.

We have just had to be spontaneous (I know, not one of our family strengths) and come home earlier than planned because a weather front plus camping at a Christian festival might not have been the most sensible plan. Its upset all the known plans, and caused anxiety all round but before we left I was sitting in a seminar surrounded by other carers and parents who find hope in Jesus like me, and I was reminded by one who commented that her way of self-care in the midst of caring for others was to notice the beauty in the ordinary.

It struck me, and I have brought that thought home with me. If the weather behaves for us I will pack that thought and take it with us to our next week of camping with my sister and her kids by the coast.

Seeing the beauty in the ordinary, such a simple thing.

And as I think about it, such a transforming thing.

Simply taking time to notice beauty; in an unexpected smile; a flower growing through the pavement cracks; the pattern of the sun bouncing and dancing off the sequins of my daughters T-shirt in the car. There is beauty everywhere we turn, when we notice. But how easy to miss it when we are feeling tired and overwhelmed. Somehow we find ourselves using our energy to anticipate the negatives and the problems round every corner, and forgetting to note the beauty in each other and the world around us.

I am reminded of Jesus’ words to a crowd of worried parents,

“Will all your worries add a single moment to your life? For example why worry about clothes? Look how the wild flowers grow. They don’t work hard to make their clothes. But I tell you that Solomon with all his wealth wasn’t as well clothed as one of them. - have you ever seen colour and design quite like it?” (Matthew 6:27-29)

When we stop and notice beauty, pause just for a moment to take it in, we can’t help but see intricate detail and design, amazing extravagant colours and shapes. They remind me of a Creator who takes care in the details – all the small things, even the things so many of us walk past. He sees them, they make Him smile, they delight Him. He has knit beauty into His world at every turn and every hidden corner, nothing is too small for His attention and care.

I am reminded again that nothing in my life, or in my family is too small for His attention and care either.

He has knit beauty in and through us too. We make Him smile, we delight Him! There is nothing about us, even in our most awkward and ordinary moments that He walks past without noticing. He sees. He smiles.

So, today waking up unexpectedly at home and faced with piles of washing, suitcases everywhere hurriedly packed, the kitchen piled high with shopping done for camping that needs sorting and tidying – perhaps today is a good day to put this into practice! Where is the beauty in all of that? I need to take those moments just to notice and take it in. I need reminding that my God sees, and smiles. He sees the beauty in the ordinary- every time!

Written by Cathy Porter

 

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Cathy Porter is  a disciple of Jesus, a mum, ordained and a vicar's wife (in the Church of England), a writer, a creative, a blogger.


Cathy and her husband, Andrew, have 3 children. Her two girls both a diagnosis of ASC. You can follow the ups and downs of family life & faith on her blog: www.clearlynurturing.wordpress.com.

It is Cathy’s heart to encourage families to share in the adventure of faith together, especially families beautifully shaped by ASC. She loves to write stories that make the reader think, ask questions about what we believe, and help the reader to discover what the Bible has to say about God and friendship with Him.

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