What's Helpful, and What Isn't

What often happens with blogs is that one writer assumes the duty of speaking on behalf of an entire community, even when the community hasn’t granted that one the authority do to so.  For me, whenever I see an Evangelical Christian saying on behalf of other Evangelical Christians something I would never say (like, Vote For ....), a small part of me throws up on the inside.  

So in what follows, I do not presume to speak on behalf of the entire community of special needs.  Our reason for writing this blog is very narrow: we want a place to share our personal experiences, and for you to get to know Matthew.  I am not the voice of authority, so please do not interpret this as “What All Dads Of Special Needs Children Want You To Know.”  We are hardly experts on Matthew, let alone the entire world of Autism and 15q24. 

When people hear we have a special-needs child, there are various responses.  Very few of them are intentionally hurtful and bigoted, and I refuse to dignify those by writing about them any further.  Most of the responses are wrought with good intentions, even if those good intentions fail to land.  Some offers of advice, comfort, or encouragement I have found to be a little less than helpful:

• You have a son with Autism?  Oh, my sister’s husband’s uncle’s neighbor’s son has Autism too (I appreciate the attempt to relate, but even my experiences with Matt are different from another dad’s experiences with his kid. Don’t pretend you know what it’s like)
• There’s no such thing as “normal” (When my 14-month-old has better fine-motor skills than my 6-year old, that’s not normal)
• Someday you’ll miss this (This seems more like an attempt to guilt me into enjoying the harder parts of parenting. It may be true, but is entirely unhelpful in the present)
• Have you tried this diet/therapy/insert-crunchy-advice-here? (It’s hard enough to dress my kid, let alone research the gamut of fad-diets)
• God doesn’t make mistakes (Really? Then why did Jesus bother healing a man who was born blind in John 9?  Why would he bother healing anyone for that matter?)
• God gave you a son like Matthew because he knew you could handle it (No I can’t)

I have never found any of these to be helpful, but I also recognize these are all given with good intentions.  I have learned to be extra patient because these responses, though they may be unhelpful (and even at times, hurtful) they are nevertheless given with sincere love and a desire to encourage, relate, and even join us on the journey.  So I do not belittle the honest attempts made by good people to stand alongside us.  On the other hand, what follows are some things we, personally, have found to be helpful.

How’s it going?  No seriously, how are things going in your home?  

Just the other day, a friend genuinely wanted to know what was going on and didn’t buy that things were “fine.”  After not letting me leave until he pressed further, I explained to him that life with Matthew is a bit like taking two steps forward, one step back.  This particular month has been “one-step-back.”  The entire time I shared that with him, he didn’t stop looking into my eyes with deep concern.  He didn’t try to sympathize with me but simply gave me the freedom to vent frustration.  And he offered me absolutely no advice, just a listening ear without judgment.  And as a person of faith, I also appreciated his promise to pray for our family, and then the follow-up text messages indicating he was, in that moment, doing just that: praying.

That really sucks!

This phrase I learned from Evangeline when she was gigantically pregnant with our last child.  She was complaining about her feet, knees, hips, and how nothing fit her anymore.  Fresh out of ideas, I offered some trite platitude about how I wish I could help, and suggested she buy bigger clothes.  Instead of breaking my nose, she said, “Danny, all I really want to hear from you is, Evangeline, that sucks!”  Sometimes we’re not looking for help, or answers.  Sometimes we simply need a safe outlet to blow off steam.  

Teach me how to interact with Matthew

Our church is small, but filled with dear people who earnestly want to know how to relate to Matthew in a positive and meaningful way.  So instead of simply giving up and shuffling him off into a corner with a tablet, they ask.  Matthew was doing this in class; is that normal?  If he starts to do that, how do I respond?  What can I do to make sure he gets the most out of this class?  Nothing is more encouraging to us than people who love Matthew enough to go the extra mile to make him feel special.  

Why don’t you let me take the kids for the weekend?

Honestly, sometimes our life feels like a prison sentence: hard labor under the Special-Needs Warden.  Sometimes just surviving another day is quite literally all we can accomplish.  The routines, doctors appointments, medications, IEP meetings, report cards, and the day to day drag every last ounce of energy we have.  With our other kids, we have complete confidence that they will, at some point in their lives, be self-sufficient contributing members of society.  We sure hope for a great surprise, but with Matthew, we just don’t see it yet.  Will he still be living at home when he’s 25?  35?  Will we ever see an end to this?  Will there be even one day in his entire life where he doesn’t wake up and cry?  Sometimes the burdens get to be too much and what we really need is serenity now!  

What I haven’t found helpful is, If there is anything I can do, just call me and let me know.  Not only do we have the duty to see our children through another day, but now you’ve just given us an assignment.  Far more helpful than the hypothetical If has been when people voluntarily showed up to help without having to be asked.  We have one dear lady from church who periodically says, “I’ll be over tomorrow to help with laundry.”  But she doesn’t just do laundry, she also cleans the dishes, feeds the kids, mops the floor, washes and waxes the car, does our taxes... the list goes on.

All parents, whether they have special-needs children or not, need to remind themselves what it means to be a couple, romantically involved with one another.  Even if just for a few hours in the middle of the day to sit across from one another at Starbucks, what Evangeline and I really crave is a break.

Finally, there are all the other things people do to support us from afar, even if it doesn’t directly impact our family.  Evangeline has sisters who have sat their own children down and explained Autism to Matthew’s cousins, hoping they will understand him a little better and be able to relate to other special-needs children in their own communities.  My younger sister donates her time and energy to a local fund-raiser (shameless plug for Project iAm), raising money and awareness for Autism in Toledo.  And that’s only a few of those who have done whatever they could even from afar.  Parents, siblings, cousins, aunts and uncles and countless friends have all done things that, even if they haven’t directly benefited us, are nevertheless far more meaningful than suggesting there is no such thing as normal.  

Again, I’m not presuming to speak for the entire community of parents of special-needs kids.  These are simply things Evangeline and I have found helpful, contrasting with those we haven’t.  Maybe some special-needs parents actually like hearing, “Someday you’ll miss this.”  If you miss it so much, you are free to take my kids to your house so I can have an uninterrupted nap.

Items carefully lined up are a very common sight in our home

A Reflection on Having a Brother, from Dad

I have a brother, two years younger than me.  Growing up, we were close enough in age that we played well together.  And as with most brotherly relationships, it would all begin by me shooting him in the face with a Nerf gun or him hitting me in the face with a playground ball.  Either way, one would provoke the other and the game was afoot.  

Together, we did everything that boys typically do together.  We fought with each other.  We fought other boys in the neighborhood together.  We played sports together.  If there wasn’t a sport to be played at a given moment, we made up our own games -- still do.  Once on a rainy day, we commandeered the living room and played an entire tennis championship, volleying a paper wad back and forth with our hands on our knees: the walls were out and a strip of tape on the carpet was the net.

We had our friends, but when friends were unavailable, we had each other.  From the moment he could walk until the day I moved out of the house, that was our relationship.  Still to this day, one of us can expect to get hit by the other in the back of the head with a snowball in my mom’s kitchen on Christmas.  

Evangeline’s brothers are similar to that: close enough in age that they were simultaneously each other’s best friend and mortal enemy.  In fact, most brothers who are close in age like that might say something similar, though the nature of play between sets of brothers may vary.

So when we gave birth to our second son, we had stereotyped visions of what our sons’ relationship would look like.  Our boys would ride bikes together.  They would play catch together in the yard.  They would chase girls with worms together.  On a rainy day, they would play games, or make up their own games together.  They would hate each other at breakfast and join forces to torment their sister before lunch.  They would have that typical brotherly relationship that I had with my brother.

And so, grief confronted me at a rather surprising moment this morning as I compared my experience as an older brother with Nathan's.  Nathan and Matthew are as far apart as I am to my brother, yet their sibling relationship is significantly different from ours.  All Nathan wanted to do this morning was have a sword fight with Matthew in the living room.  If my brother and I had light sabers when we were kids (we weren’t the biggest Star Wars fans), I could have taken the red one, chopped my brothers’ arm off, and expected him to pick up the blue one and fight back.  We might have broken a lamp or a window or a bone in the process, but the risk would have been worth it.  

All Nathan wanted to do was play with his brother.  All he ever wants to do is play with his brother.  So he took a light saber, chopped Matthew’s arm off, and tried every trick in the book to get Matthew to chop his arm off too.  “Chop me, Matt!”  “C’mon, hit me right here Matt!”  “Matt, I’m Darth Vador and you’re Luke Skywalker!”  “Let’s have a sword fight!”  

Matt just doesn’t get it.  

He stands there not knowing what to do.  He holds a light saber up, like Nathan tells him to do.  He stands there while Nathan attacks him (Nathan is a great big brother; his “attacks” are pretty tame).  And there is just no response.  No fighting back.  No chopped arms.  No laughing together.  No joining forces against their younger sister.  Eventually, Matt drops the light saber and finds a car to drive on the couch like he always does.

This is typical.  “Let’s play soccer,” Nathan says.  So he kicks a ball toward Matt, and Matt just lets it roll on by.  “Let’s play basketball,” Nathan says.  But Matt doesn’t dribble or shoot or play defense; not because he can’t but because he just doesn’t get it.  “Let’s shoot each other,” Nathan says.  So he takes a gun, puts another gun in Matt’s hand, shoots Matt, and Matt simply drops the gun to go drive a car on the couch like he always does.  

Nathan often tries play with Matt on Matt’s terms.  Some days, there is little success, but even on a good day, their relationship is far from reciprocal.  As desperately as Nathan tries to play with Matt, it just doesn't happen.  Honestly, I would give a kidney if it meant I could replace a window they broke during a sword fight in the living room.  

I suppose the silver lining is that while I know what Nathan is missing, he doesn’t.  I have to believe that when he is an adult, he will be more well-rounded because Matt is his brother.  But in the meantime, it is hard to hear Nathan say, “Matt, try to chop me!” and see Matt just drop the light saber and walk away.  

Certainly not all brothers have the kind of relationship that I had with my brother, that my dad had with my uncle, that my brothers-in-law had with one another.  Some brothers were too far apart in age to have any kind of meaningful relationship.  Other guys grew up with no brothers at all.  And you might be tempted to say, “Yeah, well Nathan will have a different kind of relationship with his brother and will be better for it.”  That’s certainly true.  And maybe it isn't fair for me to impose on my boys the kind of brotherhood I had with my brother.  But what I saw today made me grieve.  All Nathan wanted this morning was a sword fight with his brother; something Autism has taken away from him.