Adam

This is a rather difficult blog post to make as there is so much to say.  So I apologize in advance if this is just seems like incoherent rambling. (Note also, I've been working on this for weeks)

I made the mistake of searching Genesis and Phil Collins in the iTunes store, and oh man... my poor wallet.

Such good music.  I like Phil Collins.  He's one of those artists who blows a lot of today's crap out of the water.  They just don't compare, not in style, not in voice, not in lyrics, or in sheer brilliance.  He's awesome, and you can't get around that.

Granted, that not-so-humble opinion of mine also has a lot to do with how I grew up.  Phil Collins was pretty big in our house.  My parents are fans, so naturally we had several of his albums to listen to, but the biggest fan was Adam, and because Adam loved Phil Collins, well... EVERYONE had to love him too.

Adam has low-functioning autism, and one of the things that typically keeps him occupied is listening to music.  He's gone through many phases of overplaying various different songs/artists, and yes, Phil Collins has persistently been one of them.  At the time I'd often begrudge the fact that I had to hear "Jesus He Knows Me" for practically the five billionth time whereas heaven forbid I ever publicly indulge my Backstreet Boys CD (okay to be fair, that wasn't just Adam's fault, Dad was an avid BB critic too).

But looking back now I'm rather grateful for that experience.  Phil Collins totally beats Backstreet Boys for one thing, but listening to his music also gives me something to think about.  It brings back memories of childhood, of home, and especially of Adam.  That's probably the biggest reason why Phil Collins' music strikes me so.  I don't like it so much for the artists' sake as much as I do for the sentimental value where it reminds me so much of my big brother.

Super Handsome!

I think about Adam a lot.  I may not always express it, but I do.  And this recent iTunes splurge has exaggerated that.
I think about when we were little, how we used to share a room, or how we played on the swing at Grandma's, or when he'd watch me play Spyro...
I remember when he'd pull my hair and Leslie's, steal my food, bang on the piano keys while I was trying to practice, or do other things to annoy us as any big brother would.
I think about how big he's gotten, and worry about what's going to happen to him as we all get older and begin to go our separate ways...
I wonder how he's doing in his school program, or what sort of new communication programs they're trying with him...

And then I think about others who've had little to no exposure to those with special needs, and wish that there was some way I could adequately express how amazing, trying, rewarding, frustrating and blessed it is to have someone like Adam as an older brother.  For that matter, I wish there was some kind of adjective that could single handedly describe all of those seemingly contradictory things at once.  There is just so much to say.

Watching the Price Is Right

So what do I say now that I'm blogging about him?  This is where I got stumped for the longest time.  In order to talk about Adam, I have to explain the specifics about his condition.  He is low-functioning, meaning on the autism disorder spectrum, he is of the severest cases.  He is non-verbal, and knows only a few basic signs like eat, drink, more, stop.  He cannot function in a normal classroom, so he has been put in a special, separate program with other people with conditions like his, even long after he would have graduated high school.  He has sensory overloads in that certain kinds of noises, large crowds, lots of activity happening all at once, or being outside of his normal routine, can be very stressful for him.

This is the part where I tend to shy away, not because I am ashamed of Adam, but because introducing him always seems to necessitate explaining what's wrong with him first.  I hate that.  I hate it because I worry that that's all people will see in Adam when they think of him. When I talk about Adam I want people to be able to see him the way I see him-- as a person, not just as a person with a severe mental handicap, but as an actual PERSON with likes, dislikes, certain hobbies and a distinct personality just like everyone else.

For instance, when I was talking about Phil Collins above, how much attention were you paying to the fact that Adam likes Phil Collins as opposed to when I said he has low-functioning autism and listens to music to keep calm and occupied?

Adam doesn't just like him simply because it alleviates the symptoms of his handicap somehow.  He also listens to those songs because he actually likes Phil Collins in much the same way you or I might like Imagine Dragons.  Phil Collins aside, he legitimately loves music.  He is a musical person.  And it's not just any music you can turn on to make him happy.  He has his own specific and selective tastes, can recognize when you are playing his favorite song, and will manipulate the iPod until he gets the song he wants.
His taste in music is eclectic.  Did you know he also likes Yanni?  Weird Al?  Christmas songs? Andreas Vollenweider?  Asia? Primary songs like I Am a Child of God or Teach Me to Walk in the Light?

Yeah! Go team!

Did you know that he likes to press keys on the piano, many times even right down to a specific set of notes?
Did you know that he loves it when someone plays the guitar, or when Mom gets out her violin?
Did you know that when our sister Leslie was singing O Holy Night in sacrament meeting, Adam specifically sat up from his nap on the pew to listen to her?

I don't say any of this to be condescending, but rather because it's just one of those things where I wish I could fully express to people how cool this is and have them rejoice with me in it!  Think about it: Adam loves music! Music is beautiful to all of us, but think about just how much more beautiful it must be to Adam in the way he sees the world with all its overwhelming sights and sounds, and then all of the sudden... there's music.  There is something so blessed and sacred about that art that he legitimately loves it in ways we probably can't comprehend.

I could go on and on about all these cool things about Adam, and it's with this perspective that I've tried to talk about him if I decide to mention him to others.
When I was somewhere between 8-10, I remember standing up to some other kid who kept calling him stupid by explaining how Adam knew how to work the VCR player.
I tell people that his favorite movies are Beauty and the Beast, Snow White, The Swan Princess, The Muppets, Mary Poppins, Rudolf the Red Nosed Reindeer, and the Frog Prince (I'm probably missing some), and then I might joke about how I have those movies memorized forwards and backwards because he'd hit the rewind button when they were over.

See, I told you he likes horseback riding!

I'll say that he likes basketball, that he likes watching people bounce the ball around in the gym, and that he might even pass a ball towards you so that you'll play.
I'll mention that he likes horse back riding, and actually goes to a weekly therapy session offered for people like Adam.
I'll say that he has the reputation for being the prankster/trouble maker at school. Example 1 out of 1,000: he managed to get his hands on all the timers in the classroom without being caught so that later on in the day, when one of the teachers was sitting there alone, they all started going off... one... by..... one.... >:)



I'll talk about how he likes dogs, snow globes, light up toys, lasagna, swings, swimming, the rain, or how he still acts like any older brother in the way he'll annoy all of us when he'd pull our hair as kids, break our CD's, or (his new favorite) scream at the top of his lungs before going to bed, laughing his head off whenever we protest.


And then I'll have to stop myself before I get too far ahead, because I know that if I don't shut myself up soon, those listening will might wish I would just from the sheer volume of new information.  There's so much more I could add to that list.  I love talking about him in that way.  I guess you could say it's me being that pesky little sister always bragging about how cool her big brother is.

He loves doggy kisses

But even with all that being said, yes.... yes, living with an autistic brother is hard.  Even as I talk about all the positives, I can't pretend like it's all butterflies and sunshine.  It's not.  There have been many, many times where our patience has been completely exhausted and we've nothing left to do but throw our hands in the air and scream because we are absolutely clueless as to what to do.

I remember when we were really little, Adam would cry inconsolably whenever it would rain or when the sun would go behind the clouds and Dad had to hold him close singing "You Are My Sunshine" to calm him down.  We've had countless episodes, at home and in public, where he's lost control because he was so over stimulated, or simply angry because he didn't understand that we couldn't fix his favorite toy.  He has knocked over things, broken clocks, CD players, lights, picture frames, dishes, and in my mind I can still plainly see some of the bruises on my arms from days where he was especially ornery and repeatedly pinched me if not my mom, dad or other siblings.

Thinking about those things makes me all the more afraid that that negative image will be all people associate Adam with.  Even that aside, point blank, it's just not easy to talk about on a whim.  You might not be going around beating your chest like "woe is me!" (we don't), but it's still painful for the sheer fact that someone you love has to suffer so much to the point that you can't even communicate with him on a basic conversational level, yet how do you explain this to people who, for the most part, could never relate to this?  For instance, how are they going to react if you say the reason you've had a bad day is because Adam got so upset that Dad had to physically pin him to the ground so that he wouldn't hurt himself or others?  On days where you can do nothing but weep, you feel like there is no one you can turn to because there seems to be no one who understands what you are going through, and you worry about how they might judge you, your loved one or your entire family for it.

No fire alarm pulled that day... I think

That being said, though we may not go around wearing this trial on our sleeves (because at the end of the day there's really not much you can do about it), extending just a little love and support goes a long way.  No judgments, no lectures... just patience and understanding, because you unless you've dealt with this directly, you have no idea what it's like to want to shrink to some unseen corner of the chapel on Sunday when an upset Adam has once again pulled the fire alarm, or avoid eye contact with what feels like thousands of ogling bystanders as you drag him out the store with scratches and pinches stinging fresh on your arm.

It's another thing I wish to be able to express alongside wanting people to see Adam as an actual person.  Not only do I want people to get to know Adam or anyone with special needs as the incredible people that they are, but that with that perspective they might also be able to sympathize with and support those who work hard every day to take care of them.  It's hard, and we speak from experience when we say that it really means a lot when someone takes the time to reach out, even if it's just praying for them,  being there to listen, or asking how they're doing.

But on another note, it is in the midst of our greatest trials that we realize our greatest strengths.

Going to School!

People have asked me if I ever wished Adam were normal, and quite frankly this is a very perplexing question for me.  I honestly never thought about it that way growing up.  Adam's autism is all I've ever known, so trying to picture him as something else is literally the most foreign concept to me.  Even amid the bad, it's not something where I see him as defective or am constantly bemoaning his fate.  To me, it's just Adam, and something I've accepted as a fact of life, embraced it even.

But that doesn't mean we haven't wondered what it would have been like, and yes, there are moments where we might inwardly mourn the deeper effects of his autism.
I remember my Dad being disappointed when Adam couldn't participate much as far as Boy Scouts went.
When the young men Adam's age were giving their mission farewell talks, my mom began to cry because the realization finally hit her full force that serving a mission was an opportunity not available to Adam right now.

Hugs for Lezzle!

My parents often hypothesize that, if he were normal, Adam and I would be pretty close while he and my younger sister would be butting heads all the time. Yet this sister once told me she thinks they would be close as well if only she could just talk with him, and she wishes often that that were the case.

For me though, I think the hardest thing about this is not the bruises or broken CD's, but watching as my friends/roommates' older brothers will come over to chat with their sisters, tease them, laugh, or comfort them when some stupid boy breaks their heart, and then realize.... I'm never going to experience that with Adam.  I'm never going to know what it's like to have an older brother that teases you, pushes you around, and drives you crazy beyond that of pulling your hair, yet who also protects you, looks after you and gives you good advice.

I will never... ever... know what that is like.  I could have, but circumstances chose otherwise. Sometimes remembering that hits me hard.

But as I've thought about this more lately, the mourning soon melds back into gratitude as I think about all the things with Adam that I do have.  I can honestly say that I would not be the same person I am now if he were normal.  I don't think any of us would be.  There are so many things he's taught us without even needing to speak.  His place in our family is a blessing, not a burden.

Loves for Mom!

As far as wishing he were normal goes, sometimes my mom and I will talk about his many funny personality quirks and say "Oh if he were normal, we would be ____."
And I think, you know what, the fact that we can even say that at all goes to show... he is normal already!  He's not some foreign, distant entity floating around somewhere that we'll get to meet eventually.  He's whole being, his personality, his spirit is right here, right in front of us!  It's just that the limitations placed on him here in mortality means we don't get to see the full extent of it right now.
So I guess I should amend my above statements to say I will never know what it is like to have a normal older brother in this life.  We are promised that in the resurrection, because of the Atonement of Jesus Christ, all will be made whole, glorified and perfect.  Even people like Adam.  I earnestly look forward to the day when I can see Adam in his perfected state and get to know him even more.

Because if this how cool he is now, just think how much more awesome he'll be once we've gotten to know him more fully.



Also, in case you don't know the song, this is Jesus He Knows Me, by Phil Collins. Again, one of Adam's personal favorites :)