Our Guide

I was sifting through memories the last few months and came across a picture of me that unknowingly marked a significant point in my life.  The picture is of me surrounded by a bunch of Honduran kids with a huge smile on my face.  It was taken somewhere between 2004 and 2007 at an orphanage in Lapaz, Honduras, off a dirt road with dogs running around and many more kids laughing and playing elsewhere. 

This was my first mission trip. I had no idea what I was doing or the real reason for me being there.  The kids surrounding me in the picture knew Jesus way better than I did and I did not have a clear job on the mission trip other than to play and connect with these kids.  This picture was stored away and became memories that were patched together as my life went on.  It was a fun trip, but it wasn’t easy.  I know if I had a greater understanding of what the trip was for and why we were doing a mission I would have experienced the trip in a totally different way, or maybe chosen to not go at all.  

Looking back on this seed planted for missions I can faintly see how there was work being done all along to get me where I am in this season. The “me” in the picture thought being a pediatrician would be a great career and this trip might be an interesting thing to talk about in a college essay or put on a resume.  The real story being written was that God would expand my love for children in need to advocacy and education for kids with severe disabilities.  The “me” in the picture could not understand why anyone would need a savior or faith in God, let alone a clue who Jesus was.  The story God was writing was He would come for me too as I needed a savior more than I could have ever understood. The “me” in the picture thought this trip was a fun adventure, and the story that God was writing was that I would have no idea how amazing an adventure God was planning for me.  

A lot has happened since that picture, but I feel like saying “yes” to Jesus put my life in acceleration. 

So many things have changed, shifted, fallen into place or made sense since saying yes.  The me in that picture is not so different from me now, but more focused.  Since that mission trip to Honduras, I got my masters in special education rather than becoming a doctor.  I am now covered in kids that look like me in pictures and we are heading to the mission field with more focus and direction from the Lord and I could ever imagine.  God has used my background of special education to get me to come back to him and also immediately put me to work bringing His children back home too.  I have enriched my Jewish roots and heritage with a clearer picture of who God is and who I am in the love of Christ.  God has shown me a place to care and love others as He did.  

The smile on my face in that picture is just as big now. When I think about how my mission experience started as a Jewish teen at a honduran orphanage and now I am preparing, with my husband and 3 kids, to launch to France to serve at a camp.  I can not fully appreciate or understand His preparation of my heart in the process.  My heart is so different since that picture, no longer am I thinking about what would look good on a resume, but rather how can I bring more people to know the depth of this love and acceptance.  It shouldn’t surprise me though, God is unchanging and knows all these things.  I am the one who is changing as I experience and know Him more deeply.  I think about this memory from God’s perspective, as he sees the whole breath of my life at once. There was no coincidence about this journey, nothing surprising to Him and whether I realize it or not, He will guide me.  The verses from the end of Psalm 48:14 feels so comforting in thinking about the journey that has been completed and the road ahead of all of us in our walk: “For this God is our God for ever and ever; he will be our guide even to the end.” 

Wherever God has placed us, whether in our job, role as a parent, ministry role, etc, God has worked ahead of us and in us in preparation.  We are in practice and getting prepared long before we realize it.

I see more clearly the truth of the verses from Romans 8:28, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose…”  I know that God is guiding me to something good, not easy, but good, and that’s something I can get excited about and put my faith in.  Praise God for this first mission trip and the seed that it planted in my heart.  Praise God that He has chosen to continue to make his plan clear for me and chosen me as bold and courageous enough to do as he has called.  Praise God that He is with me now, in the past and every day to come. 

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

A Father's Love

What does the word “father” or “dad” mean to you? What images, memories or feelings does it conjure up? For some of you it brings the most wonderful feelings of being loved, cared for and protected. For others, it stirs up hurt, fear, abandonment, or anger. For yet others, it may be a mix of the two. What I know to be true is, if you had a good dad, you cherish him. If you didn’t, you wish you did.

That brings me to the question, what makes a good dad? A recent podcast interview (that will be airing the first Monday in July) that Jonathan and I did with the founder of 21st Century Dads focused on dads and concluded with talking about a “good dad” coin that they offer for sale that features the words: love, honesty, patience and commitment. Love is the defining attribute in this list that the other traits expound. 

Our culture has lost, diluted and redefined the meaning of the word “love”. It is not only an emotion but is much more an action. I Corinthians 13:4-7 defines love as patient and kind. Not jealous, boastful, proud or rude. Not keeping track of wrongs done. Not glad for injustice but rejoicing when truth wins. “Love never gives up, never loses faith, is always hopeful and endures through every circumstance.”

“Not all of us can do great things. But we can do small things with great love.” – Mother Teresa

For the father with special needs kids, where the acts of great love include cleaning up poopy messes from a teen or adult child, taking an extra shift or an extra job to pay for therapies, coming home from work to step into a home that is more work and give his wife a break, the unrelenting pressures to be there, to provide, to support, but not be able to fix. He can’t fix, but he can and does love. And that means everything.

I don’t remember the situation that caused it, but I remember having an especially rough day when I was upper elementary or middle school age. I was crushed. I flopped on my bed and cried my eyes out for a while before getting ready for bed. When I returned to my room after showering, I found my extensive stuffed animal collection which was normally very tidily arranged down in a corner, dispersed to every wall, shelf, drawer, curtain rod, and surface of my room with the animals arranged in various comical actions. My dad couldn’t fix whatever caused my crushed tweenage heart, but his simple action and involvement reminded me I was valued and loved. Thirty years later, that memory still makes me feel loved. 

Dads, you may not be able to fix whatever is troubling your family, but being there and showing up consistently, lovingly, patiently for the good times and the hard times makes you a hero.

Of course, the ultimate example of a father’s love is our heavenly Father. I John 4:7-10 tells us, “Dear friends, let us love one another, for love comes from God. Anyone who loves is a child of God and knows God. But anyone who does not love does not know God, for God is love. God showed how much he loved us by sending his one and only Son into the world so that we might have eternal life through him. This is real love – not that we loved God, but that he loved us and sent his Son as a sacrifice to take away our sins.” This is love. It involves choice, sacrifice, and often putting others’ needs ahead of our own. And regardless of your earthly dad, you have a heavenly Dad who has done that for you. And a Brother who has as well. If you haven’t met them and would like to, feel free to contact us. We’d love to introduce you.

Remember dads, you don’t have to do great things to be a great dad, just small things with great love!

“It is admirable for a man to take his son fishing, but there is a special place in heaven for the father who takes his daughter shopping.” …or relocates her stuffed animals.

– John Sinor…and Sarah McGuire

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!

Due to COVID-19, Hope Anew is waiving all membership fees for the community!

5 Powerful Ways Special Needs Parents Impact The World

5 powerful ways special needs parents impact the world may sound hyperbolic to people looking in on the disability community. But I've been part of a caregiving family all my life, and I assure you that special needs parents impact the world every single day. We just don't realize it. In fact, we tend to discount the importance of what we do. To see if that's true for you, read through the following statements.

• When someone asks about my job, I say things like "I'm just a mom" and "I'm just a dad."

• I sometimes think other people contribute more to society than I do.

• I sometimes think my life is too ordinary to make a difference.

• I rarely ask our physician questions about treatment options for my child because the doctor is the expert.

• I don't say much at parent-teacher conferences or IEP meetings, because the teachers and administrators know more about education than I do.

• I care for my child, but that's just what parents do. It's no big deal.

If 1 or more of the above statements describes you at least once in a while, you are selling yourself short as a special needs parents. As Bob Newhart said in one of the best comedy sketches ever, you need to stop it because your work caring for a child with special needs is making a huge impact on the world in these 5 ways.

1. You impact your kids' lives. All parents impact their kids' lives. That's no different for parents of kids with special needs because that's what parenting is. That's what parents do. We impact our kids' lives as we care for them, comfort them, teach them, provide for them, and encourage them. We are training them and creating a framework of support so they can be as independent as possible throughout their lives.

2. Your love changes your child's life trajectory. When you meet your child's basic physical and emotional needs, you are programming the wiring of her brain. Your daily love and care makes her brain more resilient, more intelligent, and more loving for the rest of her life. With every cuddle, every changed diaper or pad, every book read, every bath, every song you sing, and every walk around the block, your love and care maximizes your child's potential and enriches her life.

3. You fight against the power of evil. The brains of children who are raised without a loving primary caregiver, even if their physical needs are met, suffer lasting effects throughout life. Their relationships tend to be unhealthy, and they make poor choices. They are more prone to develop serious mental and physical illnesses, they age prematurely, and their life expectancy is shorter. By caring for your child with special needs, you fight against and minimize these evils. To put it another way, love is your super power.

4. You are an example to your children. I watched my mother care for my father for 38 years, starting when I was 2. She did many things right and some things wrong, and both were an example to me and my siblings. She wouldn't ask for help and required far too much of us as children. Because of her example, I now encourage parents raising kids with special needs to ask for help when they need it and to make space for their typical children to be kids and not caregivers. Through her example, I also saw that the foundation of loving someone in sickness and health is built on ordinary moments of care and compassion in which the holiness of God is displayed. In the same way, you are an example to your children now and for as long as they live.

5. Your care and compassion for your child with special needs testify of Christ in you. People outside the disability community see you and your child. Your caregiving is love in action, which means you are a living testimony of Christ. Even better, when onlookers say things like "I couldn't do what you're doing," you have an opportunity to share your faith story. You can explain how your dependency on Christ is why you can do what you do. God will use both your spoken and your lived testimony to draw onlookers closer to Him.

These 5 powerful ways special needs parents impact the world are the tip of the iceberg. How do I know that? Because God considers your sacrificial acts on behalf of your child to be valuable and worthy. He never discounts them. You shouldn't either because God is using what you do for your child to change the world!

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.

Whose Fault is This?

Let’s face it, at some time or another many of us, maybe even all of us parents of kids with special needs ask the question. Whose fault? Why did this happen? We can go through all kinds of scenarios in our heads. Some of us lean to the scientific looking at or for all matter of causes: genetic, environmental, what have you. Some of us, especially Christians, lean entirely spiritual. We leave no spiritual stone unturned. We look at ourselves and our spouses. We may even look at our child. Either way, we are looking for a cause. We are looking for fault.

It’s entirely understandable. It’s perfectly normal. I would be lying if I said I haven’t done either. I have. I have wondered about the scientific and the spiritual reasons. I have blamed myself. I have wondered about genetic histories of myself and my wife. I have wondered what it was that I did to cause this. My guess is that you have too.

We are not alone in that belief.

In his Gospel, the apostle John recounts the story of Jesus healing a man born blind. Perhaps you remember the story: Jesus spits on the ground making mud, puts it on the man’s eyes and he is healed when he washes in the Pool of Siloam. It’s an interesting story on several levels. Kids love it because they learn that Jesus spits! (And they wonder if that means they have a pass to do so too). Churchy adult types may not be quite sure about it, but the spitting is not really the point. As a rule we forget about the controversy that follows, but this one healing causes a whole lot of upheaval. The story takes up all of chapter 9, and is very much worth reflecting on in its entirety. The point of the story is found right at the beginning in verses 1-3, before the healing even takes place.

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”

“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.

John 9:1-3, NIV

Whose fault Jesus?

This is not the crowd asking the question, not the religious leaders trying to trap Jesus. It was the disciples. They drew a conclusion, a conclusion that seemed perfectly natural to them. It seemed, after all, to flow directly from the Law in Exodus and Deuteronomy and Numbers. Jesus’ response is truly freeing.

It is not his fault.

It is not his parents’ fault.

Fault is really not at all the issue in this case. The issue is the glory of God. God’s glory shines through this man’s life because Jesus heals him. But God’s is at work in more than the healing of this man. The healing helps the man, to be sure, but it does far more. It sets in motion a fierce debate about sin and blindness, about who is from God and who is not, who is with God and who is not. In short, this man’s disability becomes the catalyst to see Jesus for who he is and by extension God for who he is.

God’s very nature, his compassion and humility, are seen in and through the suffering of this man. The disciples are impacted by this man. So are his neighbors and his parents. The Pharisees were forced to confront their unbelief because of this man.

For those of us with children who are disabled in some way, determining fault may feel important, but it may be the wrong question entirely. I am not saying that medical causes or treatment are unimportant (of course they are or Jesus would not have bothered to heal the man in the first place). I am saying that there is something even larger at stake.

Today, when we think about ministry and special needs, we generally think about ministering to people with special needs. Perhaps in ways that we have a hard time conceiving, it is those with special needs who are in fact ministering to us. They show us how to have mercy and show compassion, they teach us patience and yes even joy. They may well force us to confront the reality of Jesus like the man born blind.

Sometimes the crucible of suffering is exactly what we need to have our eyes opened to the light of Jesus. It is not easy. It is no doubt not the path we would choose. But as John shows us in this episode, in Jesus we see a God who is in the business of subverting the difficulties and tragedies of this world. That is a gift.

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.

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.

When I Am Not Enough

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.

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.

Can We Play?

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

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

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.

Angels or One-To-One Aides

“I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth.” (Psalm 121 ESV)

One of the great things about the summer for our kids is the opportunity to attend a camp, whether it is an overnight go-away camp or just a local day camp through a church or private organization.

It is, however, a challenge for our special needs kids because of the extra support they require, and it is a real blessing when they have a qualified one-to-one aide to support them there. But there is always a fair deal of anxiety, at least for me, since even when it is a camp with a special needs focus, you still wonder if the person will be a match for our child.

This year, our 11 year old non-verbal autistic son attended one week of a day camp at our local YMCA, along with some other special needs friends from his school community.  I thought it would be great initially, since I thought it would be a wonderful experience, but I didn’t relax until my wife let me know who his one-to-one aide was, his Special Olympics swim coach. This is a man who runs a wonderful program at the YMCA for our special needs kids with private swim lessons and also coaches and trains them to compete, and above all else he is a loving and a caring man.

The week my son attended camp turned out to be one of the highlights of our year, as every day we received pictures his coach would send us of him engaged in a variety of activities, including sports in the gym and on the field, swimming and games. The tears would fill my eyes as I saw the evidence of my son interacting with his peers in typical ways, not looking out of place or unhappy with his surroundings, but with huge smiles and the joy of a child at play. My favorite memory is the short video I received of him practicing to shoot a basketball in the gym with the help of another counselor, a skill he has really been trying to learn for sometime.

All of this would not have been possible if it wasn’t for his coach, who didn’t need to go out of his way to support just one student, but his love and kindness showed through when we needed him. It was a profound reminder that when we think something is impossible for our kids, God can make a way by bringing just the right people into our lives when necessary. Our prayers for him to have a good experience were not just answered, we were exceedingly blessed because he had the one person that fit him the best.

A week later when we were on a camping trip, I was playing with my son in the arcade room at the resort, and he was immediately drawn to the basketball shooting game way back in the corner. This is the type of game he had played many times in the past and I knew he really enjoyed playing, but many times in the past it had been somewhat difficult for him because he lacked the gross motor skills to do it easily. However as he ran up to the game now, he easily picked up the balls and pushed them up from his chest appropriately, the result being the balls traveled to the hoop and either rebounded or went right in, something that he was never successful at.

My mind immediately raced back to the video I watched with the counselor who helped practice the skill with my son repeatedly. That would not have been possible without the gift of our son’s very special one-to-one aide that showed up at just the right time and became the special “angel” we needed then.

I know there may be some activities or programs that he may not always be equipped for, but I also know that if we pray for help, help will come and we can trust that it will be better than expected.

Written by John Felageller

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.

To The Mom Who Feels Like A Failure

It was another long day, which turned into another long night, week, and month. There wasn’t much distinction between day and night. Either way, my son was in pain, screaming, and needing what comfort I could provide.

Have you been there? On caregiving duty day and night. All day. All night. All week. All month for months on end.

What was expected to be the newborn exhaustion phase has continued and instead of a few weeks has lasted several months or years? Sleep deprived. Your brain is foggy. Your emotions aren’t exactly stable. You’re not sure when you last showered, an uninterrupted bathroom break is a luxury, and sleep? What is that? You’re not the picture of the joyful, intentional mother you always dreamed you’d be and still crave to be.

I don’t know if that’s you, but that’s my story.

It can seem unending. And trying to squeeze in anything else, how do you do that when you’re already on full-time duty 24 hours/day? You know, those other peripheral things like the basic daily care of your husband, other kids, household tasks and reading your Bible.

 You’re just dragging yourself through the day (and night) because while you’re no longer that energetic, “I’ve got this” mom, you are that loving, caregiving mom and you’re doing all you can to make sure your child survives and hopefully gets the help he needs too. Yet, you see all things and people you are neglecting in life and they stack up like a litany of failures of all that you are not doing. Cannot do.

If my story and the feelings of failure and guilt resonate with you and some part of your story and feelings, it’s time to reframe some of those thoughts! You may not be able to change your circumstances, but you can change your thoughts and perspective. 

Over the next two weeks, together we will look at four of those thought patterns that we so often struggle with and how we can reframe them.

Written by Sarah McGuire

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.

The Power of Praying Scripture as a Special Needs Parent

My younger son has a speech delay, my older son a neurological-based speech disorder called apraxia that requires frequent and intensive speech therapy to learn to speak. He didn’t say his first words until he was almost four. Devastated by the lack of conversations I had with my children, one day I turned to scripture. Surely there was a passage or verse about speech that would encourage me, right?

Before long, I found two scriptures relating to words and speech that jumped out at me.

1. “How sweet are your words to my taste, sweeter than honey to my mouth!” Psalm 119:10

2. “A word fitly spoken is like apples of gold in settings of silver.” Proverbs 25:11

When my children finally said their first word and then slowly added to their vocabularies, I viewed each of those words as something sweet, something special to treasure, like an apple of gold in settings of silver.

I then combined the words I loved from both of these verses to form my new prayer for my children. I prayed for new “sweet apples of gold” every morning and on the way to speech therapy and I thanked God for the new “sweet apples of gold” after my children said a new word or phrase. I honestly love this phrase to refer to my childrens’ speech and love how it has become a part of my prayers, praying God’s own words to thank Him for the new ones my children could now say.

 After that, I became passionate about praying scripture and looking for scriptures to pray relating to topics that mattered to me and I wanted to see God move in. 

Praying Scripture For Your Special Needs Children

As a special needs parent we learn to advocate for our children–with insurance companies, with doctors and specialists, with schools, with churches, and within the community. But one of the best ways to advocate for your child is on your knees before the throne of God.

But it’s also easy to pray for the things we want. We might pray for God to move mightily for our children in ways that are not in His will or timing, and then we grow discouraged by prayer, and begin to question God’s love and care for us and our children. I have found that praying scripture is one of the best ways to combat this discouragement, because we are aligning our prayers and desires with God’s own Word and His desires. 

Here is a list of 15 scriptures to pray for your child with special needs. Feel free to print this list out and go through each verse one at a time. Consider praying one a day, or journaling your thoughts and prayers about each one. Make them personal to your child and your family’s situation.  

Praying Scripture For Your Own Special Needs Parenting Journey

The special needs parenting journey can be lonely. It can be overwhelming. It can lead to a deep grief, depression, and/or an overwhelming anxiety you’ve never experienced before. You may be struggling in your faith and believing that God is good and cares for you and your child(ren). 

I desperately prayed for relief and God felt so silent and so far away until I began turning to scripture and praying scripture for my own spiritual and physical wellbeing. By turning to and praying scripture, I was able to begin processing my thoughts and emotions in a godly, rather than worldly way and could hear the love He had for me and my children in His Word.

Here are 20 scriptures to pray as a special needs parent. These scriptures really helped me to let go of my own expectations and desires and trust God’s plan and purpose for me and my children. They restored hope and peace in my life and I pray they do the same in yours. Feel free to print them out and make them personal to your own journey, your own struggles and experiences. 

There is power in God’s word, and there’s also power in our prayers. When you combine those two powers together, get ready to see God move in mighty ways in your life, your heart, your faith, and your children.

Written by Jenn Soehnlin

Jenn Soehnlin is a mother to 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 and special needs parenting atwww.embracing.life. You can also find her onFacebookandInstagram.

Buy on Amazon

How Is Your Foundation?

Have you heard the parable about the house built on rock verses the house built on sand? It is from Matthew and is super short and sweet. The gist of it is that if you don’t have a strong foundation, you will not weather the storm.  I think a storm is a great metaphor for living this special needs life. The swells come and can cause some significant damage if we aren’t prepared. 

I think one of the biggest shifts for me as the parent of a child with special needs was becoming aware of when I begin to wilt. It happens over time then one day I wake up and think “HOW DID I GET HERE?”

It is the slow crumble, the neglect of ourselves that leads to a house that has crashed to the ground.   Because when your child isn’t well, isn’t sleeping, is self-harming, or when you have been denied AGAIN for resources you need, it is easy to neglect ourselves and be in the same state as the sandy house if we don’t have a good foundation.

The problem isn’t that we are weary, from time to time. The problem is that we don’t pay attention until it is too late and our foundations are weak and then we fall apart.

 Of course we can and should spiritually prepare. However, I also believe there are very practical, things we can do to have a strong foundation as well.

1.     You have to prioritize yourself. Oh my word! Did I really just write that out?! Yes. You did in fact read that right. YOU MUST PRIORITIZE YOURSELF. You are not a hero for putting everyone’s needs before your own. You, my friend, are human too. And if you are going to take extraordinary care of your child you must first take extraordinary care of yourself. 

 2.     You need to attend to your own health. Both preventatively and when there are issues. Go for your check-up. Establish a relationship with a primary care doctor for you. Go to the dentist. I know, you don’t have time. No one does. But do it anyway. Appointments will get canceled because of your crazy life. RESCHEDULE THEM. I also am a big fan of working out and eating things other than the crust of my children’s sandwiches. But let’s not get crazy. If you are starting from scratch maybe just start with scheduling those appointments? We wouldn’t dream of neglecting our child’s health the way we often neglect our own.

3.     Figure out what brings you to life again and do it. Do you love art? Do you like working out? Do you enjoy wandering the aisles of target alone with no agenda? What is it that recharges you? This is where the trendy topic of self-care comes in. But this isn’t about spending money on expensive luxury things. It is about finding out what recharges you and gives you life. Then make space to do that, regularly.  

4.     Get some help. Build your team. It truly takes a lot of people to help support one individual with special needs. And it is a constant game of finding people to help, that you also trust. Maybe grandparents, a spouse, helper or PCA. Maybe it is a friend or the para from school. You have to have a support team that will not only remind you that you are looking a bit wilted, but that will step in and help you prioritize yourself.  No one will care for your child as well as you do. And that is Okay. Because you need a break sometimes, which is also valid and important.

So what is your foundation looking like? Did you weather the last storm with just a bit of hail damage? Or was it more significant? I would encourage you to look objectively at this and make a plan if you are looking a bit shaky.

Written by Laurisa Ballew

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. 

When Life Is Too Hard

The phone buzzed with an incoming email. I was sitting in our minivan out in my parents’ garage hiding and crying – a full on ugly cry with gasping sobs. We were coming to the end of our visit to the Midwest where both of our families lived. It was only a couple of days until we needed to go “home.” Eleven hundred miles away from help and our support system. I was feeling the crushing weight of the non-stop caregiving for a 4-year-old and special needs two-year-old piling directly onto me again and I didn’t have enough strength or energy to bear it.

During this full-on ugly cry, I was also crying out to God. I wasn’t asking anything or listening to what He might say, or focusing on Him. I was just unloading my soul. My soul thoughts were pretty straightforward, “I can’t do it. I can’t do it. God, it’s so much. It’s too much. It’s beyond my ability to bear. I can’t do it.”

With tears running down my face, I checked my email. A sweet friend back in Texas had been praying for me and felt God wanted her to share a few things with me. She had no idea what was going on. We hadn’t had any contact in weeks. Specifically, she shared three verses or things drawn from three verses. All three were exactly what I needed to hear, but the one that stood out the most was, “I can move mountains.” This was taken from Matthew 17:20 (NLT), “You don’t have enough faith,” Jesus told them. “I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, ‘Move from here to there,’ and it would move. Nothing would be impossible.”

One of the things I love most about the message from God through my friend, it focused on Him and what He can do “I can move mountains,” not on my lack of faith.

God knew I was already so discouraged. I didn’t need to have one more area of failure pointed out. I needed to change my focus, get it off of what I can and cannot do and focus on Him and what He can do.

 It’s a decade later, and I still get overwhelmed by life circumstances. I often need to get my eyes off of me and my circumstances and look at God and who He is. Two of my all-time favorite chapters of the Bible are Isaiah 40-41, especially 40:12-28 because this section illustrates how He is amazing, mighty, and without equal. Here are a few of my favorites (40:12, 25-26), “Who has held the oceans in his hand? Who has measured off the heavens with his fingers? Who else knows the weight of the earth or has weighted the mountains and hills on a scale?” “ ‘To whom will you compare me? Who is my equal?’ asks the Holy One. Look up into the heavens. Who created all the stars? He brings them out like an army, one after another, calling each by its name. Because of His great power and incomparable strength, not a single one is missing.”

When life is too hard and you are overwhelmed, remember He can move mountains. He’s in the business of impossible, and your problem is not too big for Him.

Written by Sarah McGuire

Sarah and her husband, Jonathan, co-founded Hope Anew in 2016. Hope Anew is a non-profit that comes alongside parents of kids with special needs on the spiritual and emotional side of that journey guiding them toward Christ-centered hope and healing. They connect with parents through a curriculum-based Hope & Healing Workshop they wrote and facilitate as well as writing, speaking, and podcasting focusing on the challenges and struggles of special needs parenting. They will also be launching an online community in the fall of 2019. Both Jonathan and Sarah also write for Key Ministry, a ministry that helps churches welcome families with special needs kids and also has a family-focused blog and Facebook page.

When Life Hands You Lemons

Years ago, my husband and I had felt God call us to move to a new state, and we left behind friends and family and stepped forward in obedience. But we struggled to find a new home church where we felt we could fit in. And our young sons, ages one and three at the time, were receiving diagnosis after diagnosis. My life began to revolve around their therapies, doctor’s offices, fighting with insurance, and researching online how to help my boys. Anxiety and depression took turns settling into my life and making themselves cozy. 

I thought of the quote, “When life hands you lemons, make lemonade.” I held on to my growing pile of lemons and prayed for some mighty act of God to miraculously turn them into lemonade. He didn’t. 

God felt far away and no longer like the good God I had loved and served for the majority of my life and I experienced a crisis of faith that scared me. 

Releasing the Lemons

In desperation I turned to scripture and stumbled upon a verse in which we are commanded to “Let go of all bitterness, rage and anger….” (Ephesians 4:31) and I realized I was holding on to a lot of negative things in my life. I had become bitter and angry at God because He wasn’t being the God I expected Him to be and I wasn’t living the life I had always expected to live. I had to surrender all those lemons of expectations and bitterness and doubts and struggles to God. I had to be open to what He wanted to do in my life.

I started thinking about all the heroes of faith in the Bible. No where do we see our Bible heroes getting everything they wanted and desired. They all go through a lot of struggles, sometimes decades of trials, before God’s plan comes to beautiful fruition. Joseph, Abraham and Sarah, Moses, Job, Ruth and Naomi, David, Jesus, the disciples, Paul, and many others had to go through their share of lemons and hard circumstances.

But they became heroes of the Bible because they didn’t allow those lemons to paralyze them like I had. They didn’t cling to rotting lemons. No, they decided to focus on God and God was able to turn those lemons into something good. 

A Season For Lemonade

In Ecclesiastes 3 we are told there are different seasons in life. Seasons of grief and mourning and lemons. And seasons of joy and dancing and sweetness. 

It’s ok to go through seasons of hard times and grief and lemons. But eventually, we have to let those lemons go. We’re not meant to carry them forever.

As I learned to release the lemons I’d been holding, I began to see all the sweet things in my life. I had so many things to be thankful for. Precious children and a loving husband. A new strength and a new purpose that came through my special needs parenting trials. And so much more.

What lemons are you holding on to? Seek God and what He has to teach you with your lemons. And get ready to sip on some sweet lemonade.

Written by Jenn Soehnlin

Jenn Soehnlin is a mother to 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 and special needs parenting at www.embracing.life. You can also find her onFacebook, Twitter, andInstagram.

Buy on Amazon

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

Laying Down The Life I Expected

In the beginning I thought I would never get the hang of this chronic life I live. The list of what my daughter “needed” to be successful was never ending (is never ending) and I was an expert at beating myself up over not being enough to get it all done. I jokingly refer to myself as her personal assistant, but if you have a kiddo with special needs you know that isn’t a joke. 

In so many ways I was resentful that I now had to submit to this life I didn’t really choose. Sure, I chose to have kids, but if I’m really honest this isn’t what I thought I was signing up for.

I LOVE my daughter, and I WANT her. But I don’t really love the extra hard that comes with a chronic disability and special needs. 

I was years into our journey before I understood there is a difference between SUBMISSION and SURRENDER. And in so many special needs journeys that I see, people are stuck in a place of submission instead of landing in a place of surrender. 

Submission for me is hard. It feels like I’m being shoved in a direction against my will, and as hard as I might try there is a reality that I am not strong enough to run the other way. And the moment I get used to the idea that in a specific area I am not going to get my way or “fix” her. A NEW area pops up. It’s never ending. You get the point. I don’t like submission. 

But surrender is different. In surrendering I get to CHOOSE to lay down the life I expected to have and then fully step into the life I actually do have. It has a choice involved. 

Often these things come in sequence. We are forced to submit to our circumstances, but in order to move into a healthy place we must choose to surrender to them. Let me clarify, surrendering doesn’t not mean to give up. It just means to stop fighting against.  We can do this in both practical and spiritual ways. 

1. Understanding that you and God are on the same team. That this is NOT what God had for us. He created us to live in community with Him, but also gave us free will and Man chose sin. And thus we live in a broken world. And God is every bit as sad about it as we are. Having the realization that in my sadness as a mother God himself was also heartbroken has become an extremely comforting thing to me.  

2.  Giving yourself a break. While I wish I was talking about a long restorative trip to Hawaii, what I mean is stopping the negative self-talk. You are one person, and you cannot possibly provide every need for your child. And you really can’t for a child with special needs. Having grace for our missed steps is vital.  

3. When you feel the tension rise, that familiar “kicking and screaming” or “this really isn’t fair”, PAUSE and consider, “How would it change things if instead of pushing those feelings off or stuffing them down you stepped into them and felt them?” And then you stood in that discomfort and made a plan. Not a plan to get you out of the situation, but a plan to help you thrive within it. 

Thriving within our life situation  is all about the tools with which we equip ourselves, the God who never leaves our side and the mindset we choose to live out of.

Written by Laurisa Ballew

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. 

When Life Overwhelms You

Have you ever felt like you could not go on and that it was all you could do to take one more step? Some of you are thinking, “I’m there right now!” I get it. I’ve been there.

I was recently encouraged by the story of Kyle Maynard. Kyle was born with a rare condition known as quadruple congenital amputation. What this means is that while he was still in his mother’s womb, fibrous bands prevented the development of his limbs. All of his limbs end before the start of his knees and elbows.

Through the encouragement of his family, Kyle didn’t let his disability slow him down. As a youth, he  played football, wrestled, and was awarded the title of GNC’s Worlds Strongest Teen by bench pressing 23 repetitions of 240 lbs.

As an adult, Kyle continues to inspire others. After training and conditioning at different climbing sites around the United States, he set out with a group to climb Mount  Kilimanjaro! On Friday, January 6, 2012, Kyle embarked on this new adventure. In ten days time, he crawled the 19,340 feet to the summit of Mount Kilimanjaro and became the first quadruple amputee to reach the top without assistance!

Kyle shared that with having to crawl the entire way, climbing really was not fun for about 95% of the time. He spent most of the time “looking at rocks, dirt and bugs. And after 14,000 feet, there are no bugs.” In those moments where he felt like he could go no further, Kyle would pause and look back at where he had been.

It is easy to get bogged down in the day to day. Each day you may feel like you are climbing your own Mount Kilimanjaro. The effort it takes to just keep moving forward is momentous.  The needs of your child may be so great that it is consuming all of your focus.

If this is where you are at, I want to encourage you to stop and look back at where you have been. The clouds may have surrounded you and it may be hard to see right now, but there is beauty in the journey and you’ve come a long way.

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.

Embracing Your Child's Heart

I constantly worried about my four year old son’s development and his multiple diagnosis. I continually analyzed how far behind he was his peers, even children years younger than him, and watched them do effortlessly what we’d been working on for months and sometimes even years in therapy. I was so focused on my son’s development, I wasn’t enjoying just being his mom.

And then my two year old son began receiving a few diagnoses of his own. I found it very easy to focus on his anxiety and strong-willed nature, and how I wished he had neither. I resented his strong-willed personality, his anxious behaviors and meltdowns with all the other stressful things and never-ending appointments I was dealing with. I was so focused on my son’s behaviors, I wasn’t enjoying just being his mom.

And then I read this verse:

“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).

I’d read and heard this verse many times, but I’d never put it in the context of my own children. The verse convicted me initially. I definitely was focusing on their outward appearance and their development and their behavior and not on their heart.

But then the verse freed me to love and embrace my children for who they are, how God uniquely crafted them.

Looking at the heart

Once I started looking at my older son’s heart, rather than his development and skills, I found so much to be thankful for, so many strengths and passions and gifts to nurture in him. For the first time in a long time, I truly just enjoyed being his mother and enjoyed spending time with him.

Once I started looking at my younger son’s heart, I started to see what the behavior was indicating. He wanted a little more attention from his frazzled mama. A little more structure in our days, since each day’s schedule was different with various never-ending appointments and errands. And once I started getting more intentional about giving him some undivided attention and more structure in our schedule, his overwhelming behaviors slowly stabilized to a more manageable level as he began to feel more nurtured and supported. We began to have a lot more fun together.  

It’s easy to focus on our children’s outward appearance or behavior or development. It is easy to compare our children to other children. But we are called to look at our children’s hearts, as God does.

It takes an intentional mindset shift to make it happen, but by striving to focus on how God uniquely crafted my children, and their hearts, their gifts and passions, it is bringing so much joy and purpose into my parenting.

Written by Jenn Soehnlin

Jenn Soehnlin is a mother to two 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 and special needs parenting at www.embracing.life.

Buy on Amazon

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

When I Am Just So Exhausted

“Come to me, all you who are weary and burdened, and I will give you rest.   Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.” (Matt. 11:28-29, ESV)

Have you ever been through a season in your life when you were constantly tired? As a special needs parent, I believe it happens to all of us on a fairly regular basis, however I recently experienced a time in my life when it seemed as though I could not get any rest at all.

My son had just come through a relatively serious surgery and recovery process, for which my wife took a medical leave from her job to stay home. While she was able to support our son at home, she quickly burned herself out on the level of daily care she was finding that she needed to provide.

I certainly did my best to support her when I was home, however that also meant that as a teacher I was putting my various schoolwork on the back burner. The only time I was finding that I was able to actually get any work done was when everyone was asleep, which meant that some nights, at least on the weekends, I wasn’t getting much sleep.

I thought to myself, “Where would I find the strength to get through the long sleepless nights and the even more exhausting mornings, even on the weekends, when it was challenging to just sit and have breakfast with my son.”

I reflected on what might be positive about these experiences, and what gifts might be in these challenging moments that God could be bringing now.

First, I considered the time I had to myself late at night, when the house was quiet, and although I was busy at work, I could rest in the peace of the home while locked away in the office. While at work I could listen to my favorite podcasts or pastors, catch up on news but also listen to my favorite online personalities go deep into prayer or scripture. I could write, take time to blog or use my creativity as an outlet to keep my attitude positive and feel good about myself.

Most importantly, I could reflect on my spiritual health, pray, and ask God for the strength I needed to push through, but also to surrender my need for rest to him.

 So I take advantage of the times that I have to recharge and get grounded once again in the knowing that my God carries me when I’m weak, refreshes me when I’m tired, lifts me up when I am depressed or feeling bad about my situation. He instructed us to come to Him when we are weary and heavy burdened so that we may have rest, not a temporary reprieve but true fulfilling rest. The rest I can experience even in the middle of the night when my eyes are begging for just a few minutes to be closed, I close them as I pray to be restored, and find the strength I need to complete any task in front of me.

 Written by John Felageller

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.

Trust Your Mom-Sense!

You are not just a mom! Don’t let others intimidate you into questioning what you know is working or not working for your child. Trust yourself and keep moving forward.

I have to admit that sometimes I outwardly went along with the therapist’s plans for my child (shhh, don’t tell her. She really was a good therapist), but when I saw it was resulting in much more frustration on both my child’s and my part on a daily, hourly, basis driving us both to tears and at the same time not resulting in any progress, I set it aside and did other things. We kept the therapists’ weekly appointments to document his progress and I could keep in mind what he as supposed to be working on and maybe try it a few times over the course of the week instead of every hour and see how he responded, if he responded at all. From the therapy, I learned ways to help him when he was ready for it and markers by which to measure his progress. But, at the time, he wasn’t ready for it. It was helpful, but it wasn’t what he needed most at the time.

As his mom who was with him all day every day, it was obvious to me. The therapist couldn’t see it on a day in, day out basis. All the tension and anxiety the therapies introduced and his complete lack of ability to respond how he was asked to respond just made things worse. Instead, I focused on what he could do and built on that and focused other aspects of his treatment apart from therapy.

Yes, there are times to push our kids into things that are difficult for them. They need to be stretched and challenged in order to grow. Sometimes, that will cause tears and frustration. But as mom or dad, you have a front row seat to what is stretching them toward growth and what is pushing them too far and into the breaking point. No, you won’t get it right every time. And sometimes, hindsight will inform you how to do something differently next time. That’s okay. That’s part of the journey. Learn from it and adjust, but let the guilt go!

When a DAN (Defeat Autism Now) doctor insisted on a treatment program with medications that I had seen cause significant regression in my child and refused to treat him without him being on those medications, I pulled my son out of that doctor’s care and went back to the drawing board to figure out how to do accomplish the same treatment goal another way. And I did it!

 Moms, Dads, you are amazing advocates for your child! You know your child better than anyone. If plan A isn’t working or is causing too much angst, there is plan B, C or D. Even if plan B, C, or D doesn’t exist yet and you have to figure it out. Take a deep breath, pray, talk with other parents who have been there or somewhere similar and take one step forward. Then another.

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.

It's Not All On You

I didn’t dare move a muscle. Breathe in, breathe out, quiet, shallow, in, out. Don’t move. My son was finally asleep cradled in my arms against my chest. If I could just not move or breathe, maybe, just maybe he would sleep for 15-20 minutes and for that 15-20 minutes there would be no screaming and he wouldn’t feel the pain and I could rest – sort of.

Once, as a young mom, I remember saying to a more experienced mom, “God has given my son to me to care for and love on this earth. But, he isn’t really mine. He’s God’s. It’s my job to love him well.” She murmured words of agreement as her eyebrows rose and a somewhat sad, knowing half-smile filled her face. It was several years later I learned she had lost her eldest child in an accident many years before, long before I knew her, and I finally realized the significance of that knowing smile. 

Somewhere between the time I made that statement and the birth of my second child with the entry of additional needs in our lives I forgot those wise words and the perspective I had once held. Somehow, I took upon myself the weight and responsibility for how my son’s health journey progressed, how comfortable he was or wasn’t, for trying to alleviate his pain, and when I couldn’t, for comforting him and being with him every moment through his pain.   

His pain never stopped, so neither did I. I didn’t give myself a moment to rest because he had needs. Do I regret being there for him, comforting him, and doing everything I could do to help his body heal? No, not for an instant. But, I do wish I hadn’t carried the weight of it on my shoulders, especially to the extent that I never gave myself a break. This dear, beloved, hurting child wasn’t solely my child. He was ultimately God’s child.

Isn’t God so much more powerful than I am anyway? I couldn’t do much to change my son’s situation or stop his pain. But I could entrust him to the One who created him, who knew every one of his days before he was even conceived, who loved him so much He suffered and died for him, who was powerful enough to conquer death, who knows the number of hairs on my son’s head, and collects all his tears (all 24 hours/day worth of them) in a bottle. I could be His arms holding and comforting this precious boy, God’s love in action, but the future and outcomes are in His control, not mine. Sometimes, I could also step back and allow someone else’s arms to hold him while I took a break and got some rest.

If you’re feeling overwhelmed. If you are carrying the weight of your child’s health challenges, diagnosis, and future. If you are so weighed down you cannot rest or take a break, remember this child is God’s child. Ask Him for a way forward, for help in caring for His dear, beloved child. Then, take a step back on occasion and trust.

Written by Sarah McGuire

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.

True Gifts

“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.”

— James 1:17, NIV

Can you remember the joy of Christmas morning as a child? The expectation and wonder of it all? I remember waking up ridiculously early on Christmas morning after a late night at my grandparents’ house for Christmas Eve.

It’s interesting being on the other side, waiting, not to get presents, but to give them to my kids.

As I write this, it is four days before Christmas. Last night my wife said that she couldn’t wait for this Christmas because of a couple of things that the kids are going to get. She can’t wait for their reactions and neither can I.

Our oldest has largely achieved that detached high school phase of being somewhat above all of this. I think that he’s going to be a bit surprised. Sierra is too young to have given up the wonder. Nathan, well, Nathan is the best of us all when it comes to presents, there can be absolutely no doubt.

It’s been that way for Christmas and birthdays as long as I can remember. Nate cannot suppress what he is feeling—good or bad—about anything. He cannot dissemble and make you think that he is patiently waiting, or you got him the best thing ever when in fact he really doesn’t like it. No, whatever Nate thinks, you are going to know. If it’s great he exclaims with glee, grins as wide as he can, and poses for a picture holding the present up in front of himself. If the present is okay but not terribly exciting, the process is much quicker, and he’s on to the next one.

One Christmas, we got him a movie that we knew he liked. As soon as he opened it we knew that we had made a miscalculation. “That’s the wrong present!” he loudly protested with no concept that he was making his mother feel bad, that it is not polite to say such things, or that he is supposed to be grateful that someone wanted to buy him something they thought he would like. Concrete thinker. Concrete problem. Concrete solution. Let the world know that this is not right. And I do not exaggerate by much when I say world.

We thought that we solved the problem by getting his older brother to trade DVDs with him: Monsters Versus Aliens for Kung Fu Panda. It seemed to work. The day went on; I seem to recall that it got better. At least we stopped the immediate crisis. And then it started.

For the next several weeks Nathan decided that he needed to tell people that he got the wrong present. After the initial shock, we could laugh about it. When he tells grandma, who adores him and does a very good job of getting him to act appropriately, it’s one thing. You can smile and have a laugh because it is delivered in such a matter of fact manner.

It feels a lot different when he decides that he needs to tell the random clerk at the store, or the librarian, or someone at church—people who have no context or clue who he is, much less why he would be volunteering such information. It can get a bit embarrassing. Disheartening. And while there is no rational need to do so, you feel like you have to explain the whole story. What happened, and the fact that he has autism, so he’s still obsessing in it two weeks later. Three months later. Occasionally over a year later. It’s amazing how long things stick.

The difference between Nate and me is that I can hide my disappointment. He can’t roll with the punches or make someone think that the gift they thought was so great was indeed just that great. I can. All the while I am wondering what on earth they were thinking. This? Really? I got the wrong present! Perhaps I am not so different from my son.

I’m going to go out on a limb and say that I am not alone. On my worst days I must admit to wondering if James 1:17 is true. Does God really give us good gifts? Perfect? Really? I don’t think so. Have you really noticed what my son is going through, God? Do you really care? How is this child a good gift? My worst days. I love my son, let’s be clear. But the stress and the anxiety and the sheer exhaustion of it all pile up. And I know that I don’t have it that bad. I know people who have to deal with far worse things, far more taxing things.

But I said that Nate is the best of us at presents. The DVD episode was certainly not that. But the same honesty regarding that one gift is the reason he is the best. When Nathan turned nine or ten, we had a party with my family for him. He was opening presents, making out like a bandit, when he came to a specific present. The present that everyone in the room knew he was getting. The present he gets every year.

Every year Nate gets paper and markers because he loves to draw. Everyone knows he’s getting them. Everyone knows that he loves them. None of us were prepared for his reaction.

The wrapping paper came off and I could hear the smile on his face even though I was standing behind him. He read the label with glee, “Plain white paper! My favorite!” Yes. You read that right. A ream of printer paper. One with a label that literally read “plain white paper”. I think that everyone in the room about died laughing. I almost wept.

The truth is that Nathan is a gift. A gift unlike any I could have imagined.

I’m not much for surprises, but sometimes the best gifts are the ones that surprise. The ones that don’t cost a lot or come in fancy boxes. They aren’t things at all. Read the entire first chapter of James and you’ll get an entirely different sense of what is important and what a good and perfect gift might look like.

Our wants and desires change, they shift like shadows. What we want one minute is not what we want the next. Most of the time we don’t even know what we want. We need to learn to trust our Father of heavenly lights. To see that the gifts He gives are the best kind. He is the one who redeems us in our imperfections. Who uses the very things that are our weaknesses to confound the wise (and us, I might add). Who shows us what He can do with our imperfections and those of our autistic children.

My other children love their presents (mostly). But neither of them can hold a candle to Nathan’s wonder. He is brutally honest. He can be embarrassing in his reactions in front of strangers. And then you get hit right smack between the eyes with the two by four of “Plain white paper! My favorite!” And you realize that the best gifts are not the ones you thought they were.

And that is why Nate is the best at getting gifts. (Just wait ‘til he sees the Lego mug!).

Written by Kevin O’Brien

---

This article is a shortened version of Kevin O’Brien’s writing in Life On The Spectrum. To read more from Kevin and the other authors of Life On The Spectrum check out www.lifeonthespectrumbook.com or order the book below.   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. Their honest, raw and heartfelt stories show how God is at work in the real-world struggles of families impacted by autism.

Buy on Amazon

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. He is currently 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 and several unfinished novels which WILL be finished someday.

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.

Healthy Rhythms Part 2: Relationships

I didn’t understand how much becoming a parent would change my relationships. And being a parent to a child with special needs impacts that even more greatly. I don’t even just mean earthly relationships but my connection with God too.

Before I had my daughter Emmaus I got up early most mornings to spend time with God. It is something I saw my parents do and something I strived to be faithful in doing. And then I had a baby, which lead to less sleep. And that didn’t end in a typical time frame. In fact, due to her diagnosis and her disease process my oldest daughter didn’t sleep through the night till she was four. FOUR.

 So as you can imagine getting up a minute

before ABSOLUTELY necessary was out.

But like I talked about in part one planning is important even in the unpredictability of having a child with special needs.  I had to adjust to my new reality and my time spent with God had to adjust as well. I am thankful to live in the age of podcasts. I made it a priority to listen to biblically sound podcasts, or sermon podcasts. Things that pushed me forward in my relationship with God but that I could do while driving in the car or while on the go.

But, I had to PLAN to use my spare moments. The key is intentionality.  

Another relationship that changed greatly is the one with my husband. We do not have a typical family so our relationship doesn’t function like a lot of marriages. It is easy to let the relationship get away from us. We have had to become intentional about investing in it.  

We aim to schedule some kind of “date” EVERY WEEK. Now that might mean we put the kids to bed and play a board game. If we can get out of the house we try to but it just isn’t always possible.  For a while we had a sitter and went to breakfast together each week. 

Yearly, we try to get away together just the two of us. It is hard, and a bit scary to hand over the reigns of our crazy lives and step out to focus on each other, but we come back rested and reconnected. It doesn’t have to be long, or pricey, but it has been invaluable to us.  

Whether you are just starting your special needs journey or you are just needing to breathe life into it, try to remember that relationships will change. Remember to allow space and grace for that change to take place.  Be encouraged that there are ways to still engage even if it looks much different than before.

Written by Laurisa Ballew

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.