Stay Engaged With Your Special Needs Child (Part 1)

Three Reasons Staying Engaged Is So Hard

Our special needs kids have a special place in our hearts.  Each one is precious and unique, placed in our families as a vessel of God’s grace.

At the same time, our special kids bring special challenges that push us beyond what we thought (or think) we can handle.  And the life we would design for ourselves. 

Sometimes it’s easier to disengage and take an unplanned siesta.  I bet you can identify with me. 

My Son, Your Story

After more or less coasting with our autistic son, Matthew, for the last several years, things are changing.  We need to step up our involvement and help him get ready for life after school.

There are days, honestly, where I simply don’t feel like it. 

Just recently, I told my wife about an email exchange with the attorney helping us secure guardianship for Matthew. When it became clear that I was frustrated with all the time it was taking, and had missed an important detail, she expressed concern.

‘I’m worried you’re going to just do what’s expedient, instead of what’s best for Matthew.’

You could have heard a pin drop in my heart.  She was right.  God is calling me to slow down, engage and make some sacrifices for our son.  But it’s hard, and selfishly I don’t always want to.

I’m not sure what challenges you’re facing with your special needs child.  Each of our kids is so different.

And each of us is so different.  Some of you, like me, may sense that God is calling you to get back in the game.  Some of you are giving all you can, but feel exhausted and tempted to give up or step back. 

Staying engaged and trusting God with our special needs kids for the long haul can feel like running a race we haven’t really trained for.  It’s a challenge for at least three reasons.

Read the rest of this post at…

Trusting God With Your Special Needs Child

When you find out that your child has special needs, it can feel like your world has ended.

And, in a way, it has.

Still, those of us who have traveled down the path with Jesus know that we can trust him.  Often, though, this trust comes on the other side of some very hard lessons.

Matthew, our son with special needs.

Matthew, our son with special needs.

One World Ends

For me, October 2nd, 2003 had been just like any other afternoon.  That is, until the phone rang.  It was my wife, Sharon. She could barely even speak through her sobbing.  I’ll never forget what she finally blurted out.

‘The doctor thinks Matthew has autism’.

Autism?!  Back then, autism wasn’t big news.  I had heard of it, but that was it.  But based on Sharon’s frenzied reaction, I immediately sensed that it wasn’t good.

In the days and months to come, we tried a million different things and some of them helped.  But not nearly enough to give him anything like a ‘normal life’.

This was the first really big thing that went seriously wrong in my previously charmed life.  The first thing that my drive and intelligence couldn’t fix.  The illusion of my control was failing.  Fast.

Your Story

I know that many of you have your own October 2nd.  The day your own child was diagnosed with a condition you couldn’t fix, or, had something tragic happen.  The day that the life you had scripted went off the rails.  Or, maybe it’s just been a slow realization that things aren’t going to ‘be OK’.

Before I try to share anything else, I just want to tell you that I’m sorry.  Your circumstances and your child(ren) are probably different than mine, so I’m not going to tell you I completely understand.  I don’t.

But even though there are lots of things we can’t understand, there are plenty of things we can.  God has lessons for us to learn,  and our kids with special needs are often our best teachers.

So what can we learn?

I’m (slooowly) learning a million things through Matthew, but I think the most basic one is this:

God can be trusted.  No matter what.

In these last few moments, I want to invite you to think – or re-think – about this with me in the context of your own son or daughter. (Or other life circumstance).

A Harder, Better, World Begins

At this point, you may be thinking, ‘Look, I already know that God can be trusted.  That’s old news.  And honestly, how does that help me?’

I’m a pastor.  For four years at seminary, the idea of God’s trustworthiness was hammered into us.  I knew all about it.  In English, Greek, and Hebrew.  But not really.  I knew about God, but I didn’t actually know or trust him very much.  (A pastor-neighbor later pointed this out to me!)

So we can know something intellectually, but practically have it make very little difference in how we think and act.  God uses the real stuff of day to day life so that our head, heart and hands begin to line up.

It seems like God does his best work through adversity and painful loss.  I often imagine what it was like for Abraham when God told him to sacrifice Isaac, his only son, the one he had waited 100 years for (see Genesis 22).

Those of us with special needs kids – in a way – know what it means to lose the kids that we love.  Sometimes the loss is complete, like the funeral I did for a friend’s son who had lived just a few hours.   More often, as with Matthew, the loss is less complete, but still very painful and real.  Unlike Abraham, we usually don’t have a choice.  But we are asked to respond in trust.  Will we?

It’s true that God called the whole thing with Isaac off just in time.  But before Abraham knew that, he was ready to trust and obey.

More than he had realized, Abraham had come to trust God.   ‘…now I know that you fear God, seeing you have not withheld your son, your only son, from me’ (Genesis 22:12).

Trusting God With Your Special Needs Child (Or Hard Circumstances)

If we’ll truly give – entrust – God with our kids, and keep doing that, we’ll trust him with anything.

When we do, God provides, often in unexpected ways.  In Abraham’s case, just after God spared Isaac, he ‘looked, and behold, behind him was a ram, caught in a thicket by his horns. And Abraham went and took the ram and offered it up as a burnt offering instead of his son.  So Abraham called the name of that place, “The Lord will provide”’ (13, 14).  

Shortly after Matthew’s diagnosis, we found out his therapy costs would be $10,000-$15,000 a year.  Given our income, it may as well have been the national debt.  As that news sunk in, I got angrier and angrier at God for putting us in an impossible spot.  But, as our dinner guest – our largest donor – rang the doorbell – I figured I would fake it and at at least try to be pleasant.

Honestly, I couldn’t wait for him to leave so that I could wallow in our misfortune.  But as things wound down, he casually mentioned that, if we ever had a need, all we had to do was ask.  Before he left, he had written us a check for $10,000 – enough to cover all Matthew’s therapy costs for the entire year!  He did this every year until Matthew’s schooling was picked up by our new school district.

Before our friend’s visit, I ‘knew’ God could be trusted, but now I really knew.  Matthew is God’s son even more than he is mine, and somehow, some way, he will provide.  It’s a moment I’ve come back to again and again.

But back to you and your story.  Where are you struggling to trust God today?  It may be with your own special needs child, or, just some other really tough circumstance.  I hope that, no matter where you are, the following questions will help you to reflect and put your trust in the God who provides.

How are you (really) doing with trusting God with your special needs child or difficult circumstances?  How have you seen God provide for you specifically in the past?



Seeing God For Who He Really Is

The day wasn’t going well.

We had just learned that my autistic son Matthew’s therapy costs were going to be about a third of my salary.  And, that the insurance company wasn’t going to cover a dime.

As the day wore on, I found myself getting angrier and angrier at God.  ‘God he needs this therapy to make progress, but there’s absolutely NO WAY we can cover it. Wasn’t it enough that you gave us a son with autism?  What are you going to do about it?!’

I wasn’t really asking.  I had been deeply shaken by Matthew’s diagnosis, and this latest bad news seemed to further confirm God’s lack of concern and ability to help.

Can you relate to my microscopic faith and small view of God?  Do you ever feel like you ‘know’ the right answers but wonder if they really mean anything in your real, everyday life?

After 25 years of being in Christ, I’m convinced that our biggest problem is that we really don’t think much of God.  We believe a lot of true things about him, but in practice our confidence in him is pretty low.

I don’t want to live like that, and I know you guys don’t, either.  How can we develop a massive view of God that matches who he really is?

Continue Reading »

The Glorious Gift Of Awkward Moments

It was a moment I never saw coming, and one I’ll never forget.

I had walked down to the local Burger King with my kids so we could grab some time together.  On that particular morning, it was busy and we found ourselves somewhere in the middle of a really long line.  Not exactly the stuff of movies, right?

Except that one of my kids, Matthew, was with us.  Matthew, just 8 at the time, is autistic.  And a little eccentric and unpredictable.

Back then, he was going through a phase where he ‘had’ to use the bathroom every time we went to a store.  Not that he actually had to go.  It was more of an obsessive-compulsive thing, and it always seemed to happen just when we were in a hurry.

So this time, I decided I was going to take a stand.  I had him use our bathroom just before we walked the block to BK so he would be good to (not) go.

Everything seemed to be going fine.  Matthew had asked to use the bathroom once, but I reminded him he had just gone, and he got past it.  The other kids were staring dreamily at the colorful pictures of milkshakes and Oreo pies, the intoxicating smell of french fries was wafting through the air and… one of my kids tapped me in the back.

‘Uh, hey dad, you might want to take a look at this’.

Expecting something mundane, I wheeled around to find that Matthew had dropped his pants in protest of my ‘no bathroom’ rule.  Yup, right there in line.  And all of a sudden the cashier and 5,000 other customers weren’t thinking about flame-broiled burgers.

I’ve got to admit I was pretty embarrassed.  Seriously, Matthew?!  I was pretty sure that this was going viral on Twitter, and started looking for a secret passage so we could tunnel out of there.

But, after I fought to pull Matthew’s pants up, we (and the other customers) recovered to order our cheeseburgers and have a good time.  

Looking back, God has used awkward Matthew-moments like these to help me get over myself.  And become far less self-conscious.

Although I hope you never experience anything quite like this, God wants to use your awkward moments to transform you, too.

My son, Matthew.

My son, Matthew.

Continue Reading »

What To Do When You Don’t Know What To Do

4 Clues From Naomi's Journey

We all have times in our lives where things don’t make sense.  Where something – or someone – we love is taken away.  Maybe you’re there right now.

Or maybe it’s not that extreme for you.  It could be simply that the pieces of your life aren’t fitting together and you wonder what God is up to.  You sense that God is up to something, but you have no idea what he’s up to.

What do you do when you don’t know what to do?

question mark Leo Reynolds via Compfight

An Ancient Tale Of Disaster

Nearly 3,000 years ago, Naomi found herself in a similar situation.

In the days when the judges ruled there was a famine in the land, and a man of Bethlehem in Judah went to sojourn in the country of Moab, he and his wife and his two sons. The name of the man was Elimelech and the name of his wife Naomi, and the names of his two sons were Mahlon and Chilion. They were Ephrathites from Bethlehem in Judah. They went into the country of Moab and remained there. But Elimelech, the husband of Naomi, died, and she was left with her two sons. These took Moabite wives; the name of the one was Orpah and the name of the other Ruth. They lived there about ten years, and both Mahlon and Chilion died, so that the woman was left without her two sons and her husband.  (Ruth 1:1-5)

Any way you look at it, this was a disaster.  In the space of 10 years, Naomi’s entire life had come undone.  A famine drove her family to a foreign country where no one worshiped their God.  First her husband died.  Then, her sons married women who didn’t share her faith.  Then her sons died, too.  She was left all alone.

We’d all agree that this was tough.  But we can’t really understand what she was going through.  Today, someone like Naomi might at least be provided for through her husband’s life insurance policy.  She might reconnect with extended family, jump on a plane, and stay with them while she got her life back together.  Or find a job in the city while she went back to school.  Or take advantage of a government program that would lend a hand. Or… something.

But back then, being an older woman with no family was to be without hope.  What in the world was she going to do?

Again, some of you may be in a similar place.  (Hugs!)  But I’m guessing that many more of you are just in a season of transition, wondering what the heck God is up to.  Or, in a time where the winds of changing are swirling in no obvious direction.

How do you think about that?  What do you do when you don’t know what to do?

Five Clues

Here are 4 clues from this ancient story.

  1. You can be honest.  I love how straight-forward God’s Word is.  The opening verses of Ruth don’t sugarcoat anything.  They just plainly state the facts: there was a famine and all of Naomi’s immediate family died.  Later, in verse 13, Naomi talks about how bitter her life is.  When the circumstances of your life don’t make sense, you can be completely honest with God about it.  You don’t have to say, ‘I’m fine’.
  2. The outcome is uncertain from our perspective.   For Naomi, there was no obvious way forward.  After her sons died, she had a house and neighbors, but that’s about it.  She had no idea how her story was going to continue, let alone end.  It’s OK if you don’t, either.  And in our culture, where clear plans and control are prized (worshiped), it can be freeing to admit you don’t know where all this is going.
  3. God will start to move your story forward.  This is where it starts to get really interesting.  Just when it couldn’t get any worse, Naomi hears ‘that the Lord had visited his people [in Judah] and given them food’ (verse 6).  God loves to show up when we come to the end of our wisdom and resources.  When life bottoms out for you, or when you’re in a period of uncertainty, at some point God will begin to provide clues for what He’s up to.
  4. Our job: simply take the next step.   After Naomi hears that there’s food in Judah (her homeland) again, she takes the next obvious step.  ‘So she set out from the place where she was with her two daughters-in-law, and they went on the way to return to the land of Judah’ (verse 7).  As you look at your life, has God given you some possible next steps?  You don’t need a master plan, which will overwhelm you and change anyway.  Are you willing to take the next, tiny step?  

I remember the time when our son, Matthew, was diagnosed with autism.  That was 13 years ago, when autism wasn’t on (nearly) anyone’s radar screen.  We were terrified.  Our circumstances were different, but we felt a lot like Naomi.

Looking back, though, this part of our family’s story followed the general shape of Naomi’s journey.  God invited us to be honest about our anger and confusion as we faced an uncertain future.  He began to move our story forward by providing helpful doctors, consultants and friends.  And as we discovered that there weren’t adequate services for Matthew where we lived, we knew we would need to move as soon as possible.  So, we began by networking to find possible ministry opportunities in Philadelphia, the closest place with the resources Matthew needed.

I’m not sure where you are today, but I know that you’re facing challenges.  You may not know where to start, but this ancient story is one great place to begin.

Let’s live it out: What challenge in your life feels overwhelming and confusing right now?  And, which of the 4 steps above would help you most right now?  Share it with our community in the comments section below so that we grow together.


God’s Megaphone: How Our Special Needs Kids Show Us Where Our Value Is Really Found

Comparison based on performance. We so naturally live this way that we hardly notice it anymore.  And yet, this badge of honor is meaningless to God and deadly to us. God uses our special needs kids to rip off the masks we create and show us that our value has nothing to do with our achievements.

My son, Matthew

My son, Matthew

We were just sitting down to dinner. Since we were having chicken nuggets, we clearly couldn’t proceed without honey mustard, so I asked (our thirteen-year-old, autistic son) Matthew to go downstairs and find a reinforcement.

Moments later, Matthew came up frustrated and empty-handed.  This wasn’t the first time.  Matthew’s autism simply doesn’t allow him to find or keep track of things very well.   I didn’t say anything, but I was frustrated.   ‘God, does something this simple really have to be this hard?!’

Before Matthew was born, I had grandiose dreams for him.  As my son, of course he was going to be smart, athletic and do great things for Christ.  But shortly after his diagnosis of autism at 20 months of age, it quickly became apparent that none of this was going to happen.  I was devastated.

Anyone could understand our sense of loss, which was painful and real.  But looking back, some of the despondency was my fault.  I had unknowingly allowed Future Matthew and all his supposed achievements to define my sense of value and worth.  I had been defining my own life by what I produced and achieved, so I was unwittingly defining Matthew this way, too.

We do this all the time, in different ways.  We drive by a beautiful home and think ‘how lucky’ the owner must be.  We feel inferior because our salary is way less than our co-worker’s.  We’re jealous because our classmate gets great grades without lifting a finger.

Because we focus so much on our performance and achievements, we get proud when we do well and feel insecure when we don’t. Have you ever felt like that?

In a driven culture like ours, special needs children are one of God’s megaphones.  But what is he trying to tell us?

No doubt there are many lessons, but chief among them is this:

God doesn’t need our achievements.  He appreciates our hard work and accomplishments, but they don’t impress him and they can’t give us value.  Only he can do that.

The Apostle Paul, reflecting on his own, impressive CV, learned this lesson in spades:

If anyone else thinks he has reason for confidence in the flesh, I have more: circumcised on the eighth day, of the people of Israel, of the tribe of Benjamin, a Hebrew of Hebrews; as to the law, a Pharisee; as to zeal, a persecutor of the church; as to righteousness under the law, blameless. (Philippians 3:4-6)

Most of Paul’s pedigree doesn’t impress us today, but in his day, he was the man.  He was from the right nation (‘the people of Israel’), the most holy, strict religious sect (‘a Pharisee’) and kept God’s law to an amazing degree (‘blameless’).  He was bulletproof.

But none of that mattered to Paul anymore.

But whatever gain I had, I counted as loss for the sake of Christ. Indeed, I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord. For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ and be found in him, not having a righteousness of my own that comes from the law, but that which comes through faith in Christ, the righteousness from God that depends on faith.  (Philippians 3:7-9)

In comparison to Christ, everything else – no matter how good – is ‘loss’ and ‘rubbish’.  They can’t create ‘righteousness of [our] own’ – they don’t make us intrinsically good, don’t give us standing before God.  In fact, even more than our worst sins, our best qualities and efforts threaten to cut us off from God because they subtly trick us into believing we can get it done.

Now do you see why our special needs kids are such tremendous teachers?

It’s because most of them will never accomplish most of what we ‘typical’ people value.  Depending on their particular challenges, they may never play sports, participate in the ‘right’ activities, go to college, get married, make new discoveries, hold a high-powered job, or, start a family.  Barring a miracle, Matthew is certainly never going to do any of this.

Precisely because they will not achieve what we naturally value, they invite us to consider that our own value lies beyond what we can achieve.  This is the road to sanity, seeing things as they really are.  Our special needs kids are a living reminder that we are not what we accomplish.

So let’s bring this in for a landing and make it personal in two steps.  Ready?

  1. Think of a special needs child or adult that you know.  What limitations does he or she have?  What is beautiful about them apart from what they can/can’t do?
  2. Now think about your own life.  Where is your identity wrapped up in what you accomplish?  How would your life be different if you started finding your identity in Christ instead of your accomplishments?

Don’t forget to share your thoughts in the comments section below so that we can all benefit.