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.  

Hope

This week went so much better than the entire last month.  Keep those prayers for Matt-man coming.  The tantrums that have been our multiple-times-per-day frustration were almost non-existent.  He was happy and giggly most days actually.  At least 4 times in the past few days he actually told us exactly what was wrong instead of melting down.  I have been completely blown away.  That boy never ceases to surprise and amaze me!  I really hope this trend continues.  I'm clinging to the hope that as time goes on the good days will really start to outweigh the bad days.

Matt-man, 5 yrs old. Photo copyright of Portrait Innovations.

A Glimpse of Real Life

I don’t think many people really understand the cycles of grief that come with raising a special needs child unless they themselves have lived it.  It is a strange thing.  It comes and goes in spurts and often rears its head in very unexpected moments.  These past couple weeks it has hit me hard again.  Our family is extremely blessed to have Matt-man in it, and I wouldn’t trade him for the world.  He is a source of much joy and laughter in our home, but right now I just need a place to vent a little about some of the struggles we are going through.  

I hate what autism and 15q24 have taken from Matt.  He has to work so much harder than any of his peers or siblings to learn the simplest tasks of life, and there are some things that he may never master.  I don’t want to sound like I’ve given up or lost hope, because I haven’t, but the reality of how severely delayed Matt-man really is has finally started to sink in.  Yes, he is continually making small steps in his development, but the disparity between him and other kids his age continues to get greater and greater as he grows older.  This is really difficult to swallow.  

My 7 year old, Nathan, and 2 year old, Audrey, play and talk together all day.  They sometimes try to involve Matt, but he just doesn’t understand how to participate without a lot of prompting and assistance from me or Danny.  The way his siblings play just doesn’t seem to make sense to him.  They engage in quite a bit of play that requires a very active imagination.  For example, tonight they were making a special stew for worms using grass, sticks, leaves, acorns, garden herbs, etc.  I don’t think Matt had a clue what they were doing.  He was happy to roll a truck back and forth for an hour.  That is the kind of play that makes sense to him.  There are other times where I think he would participate if he could, but his fine motor skills prevent him from doing so.  Nathan and Audrey spend a lot of time building legos.  Trying to manipulate legos is very difficult and frustrating for Matt-man.  He would prefer to be off by himself doing something that makes sense to him – like rolling cars back and forth or hanging upside down off of the couch.

He can carry on very basic conversations about his immediate needs and wants, but there is very little meaningful conversation beyond that.  He couldn’t tell you his favorite color or favorite food.  He has a difficult time answering the question “what did you do today?” because he still doesn’t understand the abstract concept of time.  Words like today, tomorrow, yesterday, this week, next week, etc., are just that…. words.  They don’t seem to hold any real meaning to him.  He is smart enough to know that a question was asked so he responds with one of his memorized sentences, which may or may not make sense in the current context.

One of the biggest things we are struggling with right now is that he has started having crying spells.  Now by crying spells I don’t mean a little tantrum; I mean he cries hard for at least an hour until he is physically worn out and cannot be comforted.  Throughout the crying spell he will periodically start laughing his head off for no apparent reason and then go back to crying.  All we can guess is that some point in the tantrum he must decide that the sound or sensation of crying is funny in some way. Sometimes there is an obvious trigger to the crying spell, but many times he starts crying for apparently no reason and we can’t figure out for the life of us why.

The other big struggle we are having with Matt-man is the constant fear of elopement.  When he is not at school, we have to watch him pretty much every second of the day for fear that he will take off on his own. I do not think this is an intentional desire to “run away” per se.  I think it is a matter of wanting to explore the world and being completely oblivious to the things around him as he does.  He has learned how to unlock our front door handle and deadbolt, but that door is pretty loud so we have learned to very quickly check the door if we hear it open.  The back door opens into a fenced in yard with a padlock on the gate, so I am less worried about him sneaking out the back.  Honestly, it is much more difficult when we are at a friend or family member’s home.  Instead of just relaxing with friends/family, we spend the entire time stressing out about our child getting away unnoticed.  Church dinners are just awful for this same reason.  They are usually held in the gymnasium, which has multiple emergency exits.  If I take my eyes off of him for a minute, he often has disappeared.  He has gotten out of the building unnoticed more than once, which is very scary considering the church is on the corner of 2 fairly busy streets.  I worry less about my 2 year old because she has a healthy fear of the unknown and always returns to mom or dad or cries for assistance.

Matt-man is only 5, so I honestly have no idea what life still has in store for us.  He could make some unimaginable gains with continued therapy and blow all of us away.  I really hope this is the case, but I am preparing myself for the very real possibility that Matt-man will always need to be in the care of his family.  Nathan recognized this a long time ago and has said for a while now that his brother will live with him when they are grownups.  

Please keep us in your continued prayers.  We really do covet them.  We are doing the best we can with God’s help, to raise all of our children right, but this is done with a lot of stress, exhaustion, and the guilt that we aren’t doing enough.  I am thankful for the little bits of encouragement that come along just when we need them.  Just this week my oldest son, Nathan, prayed and thanked God that we have such a happy life.  We must be doing something right.