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

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

You know what I’m talking about, right?

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

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

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

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

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

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

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

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

 Written by Jolene Philo

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

The Shell Of Many Colors

“He is not here, for he has risen, as he said. Come, see the place where he lay.”

(Matt., 28:6, ESV).

This past Good Friday I had my son with me for an overnight visit. Being a now divorced dad, there are many challenges that naturally come up, but one very important one is how our autistic son will be supported in his Christian faith. For my part, I have sought out a new church with a special needs ministry that we could attend together, try to keep up with Bible reading when we can, and of course celebrate the holidays.

For a change, I decided to attempt coloring Easter eggs with him on my own for the first time. It might not seem to be any big deal to parents of typical kids, but in our house doing something as trivial as coloring easter eggs can be a big job. While I know my son understands what coloring Easter eggs is over all of these years, he still struggles with the motor control to independently control and dip the eggs, and of course he deals with sensory issues which encourage him to want to stick his hands in and splash the water. But I still felt it was an important bonding activity for the two of us, so I purchased the eggs and the kit, set up everything as orderly and neatly as I could, and we endeavored to color some eggs. Since he is non-verbal, I also set up his Ipad with his communication app next to the setup, so that he could tell me what colors he wanted to use. When it was all ready and I called him over to the table, I of course took the obligatory picture of him pointing to the colors that he liked best.

An activity like this could truthfully be pretty quick, as I just ask my son the colors he likes, assist him in dipping them into the coloring, and lay them down to dry, simple. But as people of faith, I want him to know that this is about more than just doing something fun. The eggs represent rebirth and new life, and more specifically the act of Jesus coming out of the tomb on Resurrection Sunday. I paused to reflect though on what this  meant for me and my son doing this together, as that visual of emerging from the egg had bigger connotations in that moment. I thought about this hopefully being the beginning of the end of the covid pandemic, and our whole population coming out of quarantine. I also thought about my son’s own condition as a non verbal child, and how him being able to use his device to communicate his wants was also a way of him coming out of the shell of his speech impediment. 

Watching the eggs dry, I gazed as the wet colors settled on the shells, forming their intricate swirls and patterns, contemplating their uniqueness. Just like each one of those eggs, they are unique and beautiful in their own way, manifesting the colors of God’s love, wrapping around the hardened shells of doubt and fear. It is a wonderful reminder that everything can change in the blink of an eye, as soon the shells will break, and the tomb will open, revealing the glory that was hidden inside.

Written by John Felageller

Follow John on his website: www.johnfelageller.com

R.E.S.T.

Being a parent often seems like there is never enough time, and often we shortchange ourselves on rest to compensate. Sometimes I thrive on all the hustle and bustle, and other times I feel as though I’m on a speeding train I’d love to make an immediate departure from. The worst part is that sometimes I’m unable to distinguish between the two, propelling me into confusion.  My wife Naomi knows too well, but after I’ve given my best to work and the kids, there isn’t much left for her.  That isn’t fair, or honoring our sacred relationship.  What am I robbing myself of when I deprive myself of rest in all its forms?

Rest.  This is an elusive and mystical word to a parent of young kids, which often makes me think;  “one day I’ll have time for that”  or  “I’ll rest when I’m dead.”  Neither of these views help me give my best to my family.  But I often fall into the trap of pushing myself, keeping busy and just getting the things done that Dad’s need to do.  Do I wear it as a badge of honor?  Possibly, and that is not healthy nor productive. That view is selfish and does nothing to glorify God.  When I can’t be my true (and rested) self, I am robbing the world of the joy God has placed in my heart.  Even if you're SuperMom or SuperDad, be honest, you can’t fake it but for so long.

But I got responsibilities man! Your quick schemes won’t work for me! Yes, it’s a challenge to find rest, or is it?  I think it’s important to remember that Grace through Jesus comes through Him, not through our deeds.  Deeds keep us busy, and we often give too much credit to our works. We spiral into an endless cycle of “doing” in order to prove our worth, and this isn’t just a spiritually manifested issue. 

I can’t give you a definition of what rest looks like, because everyone’s needs are different. But lately I’ve been thinking of an acronym that helps me, and may help you determine how you can weave rest into your schedule, however brief.  Here are my guidelines for R.E.S.T.

Recurring - Make it intentional, and on a schedule that works for you.  Even if it’s locking yourself in the bathroom to escape for 5 minutes (and yes, we have all done it).  Don’t let those little fingers under the door distract you, they will surely survive, as their only aim at that moment is to pull your attention. Setting yourself  boundaries will help you carve out some time.  Isn’t it strange how boundaries can make us more free?  Understanding this has always been a challenge, because as the parent you are always the enforcer.  In my daily rhythm, I try to catch myself “scrolling” and jolt myself into stealing my time back. We all find ourselves scrolling social media, so this is the perfect time to reclaim that few minutes as your own.  I also find that if I wake up before my kids, it’s hard for them to interrupt me during that time.  It’s the absolutely most perfect time of the day, since I tend to be a morning person.

Enjoy - The act of resting should recharge you, which means it should be a departure from your normal routine.  Shock your system by doing something you enjoy, which is something you have probably deprived yourself of as a busy parent.  You will be surprised how even a small burst will recharge your battery. This is a deeply personal choice, dig deep for something God has uniquely placed in your heart. 

Solitary - I’m a social person, so this one is sometimes a struggle for me.  But I find with the constant draw for my attention by my kids, the best rest for me in my current phase of life is often in solitude. It gives me a chance to reflect, which leads to the last and most important part.

Thankful - When you take time away, always do so with a thankful attitude.  You shouldn’t shame yourself while you are taking time away, that will always be self defeating.  The idea of rest (in the form of a sabbath) is deeply Biblical. You can choose to explore any of the scriptures around this topic, but I always fall back on the creation story. If God decided to take a rest, then it’s perfectly fine for you to do so as well! 

As you go about your day, I challenge you to implement these ideas.  Did you notice that it costs nothing?  And that it has no constraints on what you should do, or how long it should take?  You may need to enlist some help for you to carve out a small block of time, this is also perfectly acceptable. It is a process, just make sure that you protect what works for you. Take heart in this, and work on giving a slightly better version of yourself to the world. We are called to let our light shine, so do so with a restful heart.  

Written by Jesse Brubaker

Stages In The Parenting Journey Part 2

Last week, I began this series by sharing about this epic adventure our family is on. If you missed it, you can read it here. This journey our family is on share a lot of similarities to the journey in special needs and has four stages. This week, I will look at stage two.

Stage 2 – Shock & Research

We realized we had to move if I was ever going to have the chance to heal and recover my health.

Following that demarcating decision there was so much to do. I dove into research, as I’ve become accustomed to doing. What could be salvaged and what could not? What process it would take to save what we could? No one fully agrees. It’s hard to get a straight answer. In fact, there is no one size fits all answer to the situation. Not only is there no simple answer, there’s no straightforward answer.

After a fair bit of digging and lots of reading including books and webpages of specialists, we had to make a decision and move forward even though there was no sure answer. Based on the best information we were able to gather and based on the testing we had had done, we had to get rid of nearly all of our things. Anything that wasn’t solid and completely washable in a special solution that kills mold and breaks down mycotoxins had to go. No, surely not. This couldn’t be the answer. But it was. 

In the special needs journey, an ultrasound may show an anomaly, a medical complication may show up at or shortly after birth, a developmental issue or regression may be noticed or occur between 1-3 years old, there are different demarcating starts to the journey. But they are all followed by a lot of research and figuring out what is next. What can be done? What is the prognosis? What does the diagnosis mean? How to handle the interventions needed whether it is surgeries, medical treatments, therapies, or all of them. Who goes with the child? Who takes care of the other kids? Who works to earn the money? How do we juggle it all? Mom and dad’s learning curves are steep. There is so much to learn, so much that is yet unknown, so many decisions to make.

There often is no one right choice, yet a path forward must be chosen and pursued. You didn’t want to go this direction. You don’t like any of the choices. Is it possible this is all a horrible dream and you’ll awake soon?

To be continued…

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!

"What Do You Mean There Is A Problem With My Child"

“What do you mean there is a problem with my child?”

In some ways the parent who refuses to acknowledge their child’s special needs is harder to help than the person who blames themselves or God or the devil for the reality they are facing (see the previous articles in this series for all of these responses). Sometimes it is hard to know what to do or to say even when you have been there yourself, even when you too have wanted to deny this reality.

As a society we have become much better at giving people with special needs dignity and respect. We don’t tolerate language or statements about people with special needs that were commonplace when I was in school. All of this is a step in the right direction, but sometimes I wonder if in our desire to do better, we haven’t also made a serious mistake.

Have we made it too hard to acknowledge brokenness?

I feel for the parent who does not want to acknowledge that their child has “special needs”. I have been there. It feels like a betrayal or failure. It dashes hopes and dreams, makes us feel like we are somehow less and means admitting that we are not really in control. Even more, I feel for the child who will not get the help they so desperately need until their parents acknowledge the truth. When a parent refuses to see that their child needs help like therapy or to be in a special needs classroom, they (usually inadvertently) hurt their child. When we are so afraid of offending that we do not speak up to actually help, are we being kind?

Compassion demands that we tell the truth. No, we should not be brutal or mean spirited about it. Yes, some people delight in telling the truth to inflict pain. But we do not abandon the truth because some abuse it. Healing can’t happen until the truth is seen. Our children with special needs are broken. But that is only a part of the story.

In the Hebrew and Christian Bibles, Genesis 1 and 2 tell the story of creation. God creates a glorious universe, a world teaming with beauty and life. We are told in Genesis 1:27 that God creates human beings – male and female – in His image! He declares all creation good and places humans in the middle of a garden. He gives us purpose and companionship. He gives us Himself.

 And we mess it up. Theologians call it “The Fall”. It happens in Genesis 3–pretty much the same page as all of the good stuff that came before. Everything is affected. As one of my professors used to say, “The Fall goes all the way down.” 

The truth is that we are ALL BROKEN.

Not a popular sentiment today. On the one hand, I am encouraged by the almost gut level reaction that people have to someone being called broken. It is right and good to give everyone dignity and respect, no matter who they are, where they come from, what their status or circumstance in life or even their abilities. But that doesn’t mean we cannot or should not acknowledge true brokenness – whether it is our own or the brokenness of others.

Often, we define our entire identity around one aspect of who we are. I am part of the (fill in the blank) community. It is easy to understand why a parent would not want their child’s disability to be the defining feature of their identity. I get it. I myself have resisted being “autism dad” as a writer for well over a decade.

Here’s the truth: I am the father of an autistic child. Nathan is broken. I can’t fix that. The difference between his brokenness and mine? Most of the time I can hide my brokenness to the outside world. He can’t. But that is not the sum total or even the most important part of my identity or his. Being broken is universal, but it is the beginning of the story not the end.

When we realize that everyone is broken, we can – have to – give up the idea that we are better, or worse, than anyone else. We can give up playing pretend. We can stop curating our Facebook/Instagram perfect lives and get real. 

My identity? First and foremost, above, before and through every other aspect of me is found in the fact that I am created in the image of God and redeemed in Christ. That is good news. News beyond any trauma or disability, beyond any one aspect of who we are. And as we will see next time, it points to a better way of understanding suffering.

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.

It's The Devil's Fault

While some of us are tempted to ask why God allows our children to be born with special needs (see last month’s article), some of us have the opposite reaction. For them, the very idea of “blaming” God seems entirely out of bounds, yet the wound remains. The pain must be dealt with. And so, we blame the devil or demons.

Not long ago I ran across an article in a fairly prominent Christian magazine. A “prophetic healing evangelist” claimed to have healed two children of the “demon spirit” of autism. I make no judgment about the writer’s motivations or sincerity. Still, my blood boiled. Quoting Luke 17:19 where Jesus tells a man that his faith has made him well, this person claimed that as the mothers released their faith completely the full manifestation of the healings could be completed .

Let me be clear, I believe God heals. The New Testament, especially the Gospels, make it clear that demonic forces are real and do indeed inflict harm on the world. We should recall, however, that in the book of Job it is clear that the devil cannot simply do whatever he wants whenever he wants.

There are, however, real problems with this healer’s line of thinking.

In the story being quoted (Luke 17:11-19), Jesus heals 10 men with leprosy. Only one, a Samaritan, returns to thank Jesus. Samaritans were looked down on by the Jews of Jesus’ day because they were seen as half breeds who did not worship God correctly. When Jesus says that this man’s faith healed him, it is first about who he has faith in–namely Jesus–which would have been totally unexpected for a Samaritan.

Second his faith is clearly contrasted with the other lepers who are Jewish and therefore have right belief and worship (in theory anyway). Yes, our faith is important because Jesus works in and through it, however, it is not about how much we have. It is about what God does with it (remember too that the others were still healed). Just prior to this Jesus told the apostles all they needed was faith the size of a mustard seed (v.6)!

What does this have to do with the possibility of demonic influence in autism?

A few things. First, not all of Jesus’ healings were directly related to demons. We should not ever go down a path that says, “if it is bad it is therefore demonic.” This is simply not biblical belief and frankly gives the devil far more credit than he deserves. Sometimes a disease is a disease. Second, there is simply no indication from Jesus’ ministry that the size of our faith has any impact on removing demons and none where deliverance was in any way something that happened over time. When Jesus healed, he healed.

On the surface, one exorcism seems to indicate that it is our faith that is needed for healing, but closer inspection shows that this is not true. In Matthew 17:14-21, Mark 9:14-29 and Luke 9:37-49, Jesus heals a demon-possessed boy whose symptoms sound a lot like epileptic grand mal seizures. The boy’s father went to the disciples first, but they could not heal him. Then he goes to the source, Jesus himself. In Matthew’s account, when the disciples ask why they could not heal the boy (v.19), Jesus tells them it is because they did not have enough faith (vv.20-21), NOT the father!

Mark’s account seems to pose a problem. The father is understandably doubtful when he takes the boy to Jesus (after all the disciples just failed). He asks Jesus “if” he can do anything (v.22). Jesus replies “’if you can?’ Everything is possible for one who believes.” (v.23) Isn’t this proof that my faith as a father has a direct impact on my son’s healing? Not so fast (v.24):

 Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”

What parent of a child whom they want to see healed doesn’t understand this plea?

The man has faith to a point. He wants to believe, but his faith can only take him so far. And Jesus knows this. Because he heals the boy anyway. 

The devil is real. Demons are real. But they are not responsible for everything, certainly not every disease. It is spiritual malpractice to tell a parent that their child is suffering from demonic attack because they have a disease like autism. As we have seen over the past several articles, often we do not know why suffering happens. We do know that God is bigger than the cause of our suffering in any case. The world is a broken place. The question for us is not how big our faith is, but whom are we putting it in. Jesus has proven he is far more powerful than the devil.

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.

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.

Behold I Make All Things New

“And he who was seated on the throne said, “Behold, I am making all things new.” Also he said, “Write this down, for these words are trustworthy and true.” (Rev., 21:5, ESV).

One of our favorite past times as a family is to visit the Botanical Gardens near our home in the Chicago suburbs. It is a huge space of grounds that covers many acres of forest preserve land, complete with a variety of gardens, wooded trails and greenhouses. As teachers (or former teachers!) we are always took advantage of free entry with our ID, and it has been a great place to take our autistic son whenever he needed a motor break or just needed to be outside. 

This year, we had a much different experience, as the Gardens hosted a new light show called Lightscape which unlike previous years where they had just stung up a variety of holiday lights, this was essentially a giant light show through the entire grounds, including whole displays timed to music, lighted shapes and designs placed along the walkways and trails, and even a light “cathedral” which featured hundreds of strings of lights that covered a long open gazebo.

We were excited to bring our son since it was something totally new, and we knew how much he loved both the outdoors but also music and lights. As we entered the grounds on a chilly Thursday evening, we were struck by how sophisticated and lovely the show was, and our son was so entranced by all of the sensory experiences that he continually produced a giant smile on his face. The best part was when he stood mesmerized at a fiber optics display that was set up along the rocks of an outdoor fountain, just standing and watching the lights flow down the rocks like water.

In that moment, I was reminded by how unique and special this light display had made an otherwise regular feature in the garden that my son would have seen hundreds of times before. It was the same, but different, it had been recreated, transformed and essentially made “new” right before my son’s eyes. 

This experience reminded me of some powerful lessons this holiday season. While we always come back to the birth of Christ at Christmas as our source for eternal hope, I find it all too easy to get lost in the craziness of the celebrations.

This year, I was forced to look at this season in a new light, as my wife and me began the unfortunate process of divorce in November. I personally struggled to find hope when all I could feel was my own personal pain, suffering and anger, but a visit to one of my favorite places helped to lighten my mood. But it did more than that, as I watched my son’s amazement at the incredible light show that had changed a very familiar location into something completely new and different. It had become changed in ways I couldn’t have expected, and I was brought back to a place of peace and remembering the promise we have in our lives being reborn. It is in moments such as this that I am reminded of the promise that He will literally remake everything, and all we must do is to show up, be aware, and behold the goodness of His promises.

Written by John Felageller

John lives in Northbrook, IL 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.

5 Scriptures For When You Are Overwhelmed

Do you ever feel overwhelmed? Some of you may have just snorted and thought to yourself, “I feel overwhelmed right now.” As I was sitting at the dinner table last night, finishing the last of the Thanksgiving turkey and sweet potato casserole, I  began thinking of the parents I know with families that are impacted by special needs, who are in this place of being overwhelmed.

It’s like the movie, “The Perfect Storm.”  In this movie three raging weather fronts collide with each other to form this super storm. The movie tells the story of a commercial fishing vessel that was lost at sea with her crew.   

While we look forward to the holidays, they undeniably create extra stress. The stress from Thanksgiving merges and intensifies with Christmas. When you insert another major stressor (health issues, marriage issues, additional needs related to the care of your child…all the above), you find yourself in the middle of your own Perfect Storm. 

This can result in irritability, exhaustion, depression, wanting to escape life and being less able to deal with the individual stressors in a healthy way.

You may find yourself in a place of wishing you could just hunker down in the midst of the storm and wait it out until about January 2, as you feel exhausted, wrung out and overwhelmed.

 If this is you, I hope that the following five scriptures bring you comfort and peace during this season.

1.  “Your word is a lamp for my feet,
   a light on my path.” ~ Psalm 119: 105

2.  “Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.” ~ Psalm 23: 4

3.  “Whoever dwells in the shelter of the Most High
   will rest in the shadow of the Almighty.
   I will say of the Lord, ‘He is my refuge and my fortress,
   my God, in whom I trust.'” ~ Psalm 91: 1-2

4. “For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you.” ~ Isaiah 41: 13

5. “I, even I, am he who comforts you.” ~ Isaiah 51: 12

As this week closes, pause, take a breath and reflect on the above scriptures before diving into the to do list for next week. The same God who calmed the storms over the sea of Galilee, is with you through the storms of life today.

Written by Jonathan McGuire

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

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

Seeking Solace In The Pain

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

Seven sons.

Five daughters.

7,000 sheep.

3,000 camels.

500 yoke of oxen.

500 donkeys.

“a large number of servants.”

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

If only my anguish could be weighed

    and all my misery be placed on the scales!

It would surely outweigh the sand of the seas

Job 6:2-3a

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

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

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

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

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

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

1.      Whose fault is this?

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

3.      It is all the devil’s fault.

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

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

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

Written by Kevin O’Brien

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

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

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

Hope In The Dark

“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

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

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.

OK, It's Safe to Cross Now

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

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

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

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

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

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

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

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

Written by John Felageller

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

 

Connect with John on his Facebook page here.

Asking Why

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.  

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

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 .

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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. 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.

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

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.

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.  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.

---

 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

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.

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.

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!

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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Reframing Life

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.

Resources

https://www.facebook.com/reframingministries/

https://reframingministries.com/

https://twitter.com/colleenswindoll

https://www.instagram.com/colleenswindoll/

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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.

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

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.

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.

The Waiting is the Hardest Part

“Blessed is the one who listens to me, watching daily at my gates, waiting beside my doors.” (Prov. 8:34, ESV)

My autistic, non-verbal son has several ways he likes to communicate with us. It is mostly through body language, some basic sign language, as well as through the communication app on his iPad.

There are times when his actions are very clear in terms of what he’s trying to tell us, such as when he goes to sit on his favorite stool near the door to garage. This indicates that he’s ready to put on his shoes. Putting on your shoes, of course, means that you’re getting to go somewhere: walking the dog, a drive to a favorite park or forest preserve, or maybe just shopping at a big box store. Mom and dad, however, are not always ready or, more specifically, willing to go on another errand or to another place for a long walk in the sweltering summer heat. 

 While we love the fact he is finding a way to share his needs with us! It does make it frustrating for us to honor his request but to also give him boundaries when it’s not a good time to go somewhere, or, I dare say, we are not in the mood to go. I often wonder about what goes on his head as he sits there and waits while his parents decide what we are going to do. I think about how much I would just love to be able to grab my shoes each time he sits on that stool and just say “sure thing kiddo” and off we would go on another adventure to wherever. 

In a more profound sense, my child’s experience sitting on that stool and waiting is kind of like my experiences waiting on God for many of my own hopes or prayers, and how difficult it is to sit on the “stool” of life while we wait on an answer from Him.  If I learned anything from this analogy with my son, it’s this. As his father he needs to know that I do see him, sitting there. I do hear him even though he has no voice to ask. I know from my son’s experience that I am equally seen and heard by God when I ask for what I need. While the waiting is hard, the comfort in being seen and heard makes it easier.

So my prayer is for the strength that comes in the silent knowing of His presence, that I will learn to be patient when I immediately want an answer for myself, or my child but that I know it will be answered exactly when it needs to, when He’s ready.

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.

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

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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.

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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.