Tuesday, November 29, 2016

Asking for help

*deep breath*  I'm about to share more than I am usually inclined to do in so public a forum. Bear with me.

Dylan was in tears when I met him after school today.  That isn't all that unusual these days, unfortunately.  Some kid in his class had told him, just before the bell rang at the end of the day, that he didn't matter. I don't know what the context was, and he told me he knew it wasn't true, but it still hurt his feelings.  Then he said, "I hope Ammon is back tomorrow. He's my only friend."  We've heard that refrain a lot the last couple of years. He's mostly kind, and quite sensitive, but unusual (and obsessive) in his interests, and somewhat awkward, meaning he is isolated a bit, socially. Despite high standardized test scores, he struggles in school, and was in tears multiple times the week before parent-teacher conferences, frustrated and embarrassed about the poor grades he assumed were inevitable.

Dylan has always been unique, perhaps a little quirky, and those closest to our family have always known that and it was just Dylan, no big deal. It certainly wasn't a problem, or really even that far out of the ordinary.

As a baby, he was a dream: if I wanted to hold him, he was happy to be held and snuggled. But if I had other things to do, well, he didn't so much mind being ignored for long stretches of time.  Even though every one of our other babies rolled, scooted or slipped off our big king size bed at some point (yep, I'm that stellar of a mom), Dylan never did. He was weirdly aware of edges, so he would scoot to the side and just look over the edge and whimper until someone picked him up or moved him back to the middle of the bed.

By the time he was approaching his first birthday, he was obsessed with matchbook cars. He had one in each hand everywhere he went, all of the time. He loved to drive the cars around, but the cars needed tracks--something relatively narrow with boundaries, such as the window sill, or the trim on the coffee table. If he couldn't find a track, he'd make one.  The example that always stands out in my head, because he was so little, was one time, he was sitting on the floor of our bedroom, about three weeks after he turned one, and he picked up Doug's tie that was sitting near him, fashioned it into a rough circle, and then drove his cars on it. His favorite game was his car track through the living room: we had long windows with low sills he could easily reach. He would find about a half a dozen of his cars, line them up (usually according to size) on the piano bench, and then pick up the first one. He would drive it down first sill, then the next on the north side of the living room; then he would drive it on the narrow edge of the TV stand in front of the TV; next, he'd move it to the center of the room and drive it around the border on the coffee table; then he'd take it and drive it down the back of the couch on the south side of the living room, and then along the window sill on the southeast side of the room, and finally park in on the bookshelf next to the window.  Then he'd go to his line of cars, pick the next one, and do it all over again.  He would do that, uninterrupted for sometimes hours at a time if he was allowed to.  He loved it.

Whenever he was done with his cars, he would line them up neatly somewhere, hoods aligned and usually organized from smallest to largest.  He loved to play with blocks or megablocks, but would generally sort them by size or color before he started to build anything.  During all of this, he had no language.  He had scarcely any words before his third birthday, but by 2 1/2, he knew the entire alphabet.  He could recognize every letter and tell you what sound it made, simply from watching his sister play alphabet games on the computer.

He didn't pay attention to people very much. He was very interactive with me and Doug, and his sister (who sort of made it impossible to not be interacted with.  There was a reason we considered adding an exclamation point to the spelling of her name: Keilana!)  If Doug and I were both gone, he seemed to somehow determine who was the primary caretaker adult in his vicinity, and find that person if he needed something, but otherwise occupy himself with his toys and mostly ignore everyone. He played with toys in their intended way in a very focused manner, and gave most of his energy and attention to that. He interacted with Amanda, and in a tender mercy that I still can't explain, he played with Conner. They were so little, at an age where most kids engage in parallel play, and with all Dylan's quirks, they truly played together, babbling at each other and moving in tandem when they were in the same house.  After Conner was gone, he was often a part of Keilana and Clayton's games and activities, but just as often they were playing with each other while he did his own quietly contented thing.

When he was a toddler, I had to take a niece to a doctor's appointment for a very contagious illness and asked a friend to watch my kids so that they didn't have to be around her.  When I went to pick him up and asked how it went, she said he had just mostly stayed in that spot, driving the cars over and over, and didn't really respond to her much when she tried to engage him in other things.  She asked, "Have you ever thought about having him evaluated for autism?"  What you need to know about this woman is that she is a dear friend, one of the most grounded women I know, and mother to five children of her own, including a daughter Keilana's age who has profound autism (at 12, she is still nonverbal and performs almost no self-care).  I'd had the thought.  He functioned mostly normally, and whatever his uniquenesses were, they didn't seem to be getting in the way of his development.

As he got older and hit preschooler ages, the language came, and with the language he became somewhat more social. He started to notice and interact more with his cousins and with friends.  He still spent a lot of his time solitarily, but when we went out or had people at home, he spent more time with other little boys, and he began to be a more active participant in Keilana and Clayton's games.  It was becoming increasingly obvious that he was sensitive, both physically and emotionally.  At times when he did decide to interact, he was easily hurt in a way that his sister never had been, and sarcasm  seemed almost impossible for him. He was so young that I didn't think much of that.  He was fairly particular about the clothes he liked, but he had trouble communicating that verbally, which resulted in frequent stripping down to his skivvies.

Eating has been a disaster pretty much since he started solid foods.  For the first few years he was eating real food, it was all but impossible to get him to eat anything other than refined carbohydrates: crackers (but nothing too flavorful), chips, cereal, bread (he'd eat jelly, but not peanut butter, until he hit the point where he'd eat peanut butter, but not jelly, and then either one, so long as not both on the same sandwich), and pasta sans sauce.  So I bought no cereal, bread, or crackers that weren't whole-wheat, bran-loaded cardboard in an attempt to get some sort of substantive food in him, and that worked for a while. I thought he was just being picky and stubborn, so one night when he was three, we had chicken and some sort of blah vegetable (I can't remember specifically what), and I told him he couldn't have anything else to eat until he ate his dinner. No spices, sauces, or real flavor of any kind.  For 36 hours, my 3 year old ate nothing.  And didn't whine, complain, or throw fits or anything like that.  Just quietly starved himself. If we tried to force him to eat, he would take 10 minutes to get down a bit or two, and then he'd vomit.  I realized at that point that we were dealing with more than stubbornness, and I quit fighting.  As he got older, his palate expanded--a little.  He'd still have pizza, chicken nuggets, or crackers for every meal if we let him.

As he's grown up, he's been able to channel his energies more consciously, he has seemed more "normal" in some ways, and that much odder in others. He can spot, name, and describe dozens of species of birds, and love wildlife biology in general.  He can classify hundreds of Pokemon without breaking a sweat, and generally loves any activity where he can sort and classify, and loves to expound on those things.  But getting 10 minutes worth of math homework done every day is nearly impossible.  He built a Spiderman web across the ceiling of his room using Legos and connects (it was rather impressive) but after five years of doing it every day, he can't do a decent job washing a dish to save his life.   He finally lets us give him a haircut without having a meltdown, but if the cat accidentally gets a claw across his foot when they're playing, it sounds like his foot has been lopped off with a machete.  A few months ago, he had to have a simply venipuncture blood draw for some lab tests, and I had to hold him down with help from a lab tech while the phlebotomist drew blood because he was in so much pain and so panicked.

He has a lot of behaviors that look like ADHD: very inattentive in class, needing frequent redirection from his teacher, you give him one task to complete, and by the time he's walked 10 feet away from you, he's forgotten what it was, etc.  We took him to the doctor for an initial evaluation, and his doctor almost had a meltdown at the whole idea, and walked into the room and started the conversation with a lecture about the problems with putting kids on amphetamines. I interrupted him and told him I was looking to get an IEP, not a controlled substance, and this was just an initial evaluation to see where were at and what seems likely/not so likely.  I was so annoyed at him that we never bothered to do the follow up at the end of last school year, and that doctor has moved now, anyway.

I talked to my mom (a special ed teacher in another district) about possibly finding names of therapists who specialize in kids with ADD and/or ASD.  Its hard to know what his parameters are--whether we're pushing too hard on things he probably can't do right now, or letting things go that maybe he is capable of.  It can be tricky to know the best ways to help him, because he mostly fits under the umbrella of "normal".  But school is a struggle, and he is old enough now to recognize that he's different, and there are kids that don't let him forget it, anyway.  I want my kids to be able to reach his potential, I want him to be happy.

From the time I was 14, I was inexplicably convinced that I would have a special needs child someday.  When Dylan received his baby blessing at 7 weeks old, I was caught off guard by some of what was said, and I wondered if maybe that prompting came to prepare me to be his mom.  That being said, these weren't the needs I was expecting, and I hope that, with some help, his dad and I can figure out the best way to help him harness the power of that marvelous mind of his, and his sensitive, gentle spirit. 

Thursday, November 24, 2016


Its Thanksgiving. I've been more of a whiner than a gratitude monger the last couple of years. Oh heck, I'll say it, I've been a big, grumbly baby.  Last week, we got some news that fell into the same category that so much news the last few years has: unsurprising, but still disappointing and terribly depressing.  In my less charitable moments, absolutely infuriating.  I'm tired of being unsurprised by disappointment.

So as I tried to refocus myself on what I'm grateful for (because it is an exceedingly long list), it seemed ironic to me that the first thing that came to mind was one of my own biggest personal frustrations the last couple of years (all of which are pathetically small compared to what my loved ones have dealt/are dealing with).

I love language. My mom made a comment about some of my schooling choices initially being surprising to her because "I've always thought of you as so language-driven".  I learned to read early and was almost instantly a voracious reader, gobbling up just about everything I could.  And even more, the things I've read cover a rather broad variety of subjects.  Consequently, I have a rather extensive vocabulary, and a fairly easy command of language (for a lay person).  Because of the diversity of social environments in which I've spent my life, I, more intuitively than consciously anymore, modify my vocabulary to my surroundings.  There are certainly individuals and groups where I find myself more comfortable (we'll not delve into my social anxieties today), but its exceedingly rare that I struggle to communicate with anyone.

Last year, I faced a period of time where all of that went away.  I struggled to communicate, to express myself.  I was jumbled and inarticulate.  I lost my words.  I've thought of myself as a writer since I was 10-years-old.  I knew I loved the world of language.  But until that moment, even I didn't know how much a part of my self-conception those abilities were. I hoped (and had good reason to hope) that it was temporary, but I had no way to know for sure that it would be--no one offered any guarantees that my words would come back to me.  It was immensely frustrating.  And a little terrifying.  I was depressed and demotivated.  I had to face the reality that I might no longer even be capable of being who I thought I was.

We have moments in life, large and small, that force us to face our definitions and conceptions of ourselves. And its scary when we find that we're not who we thought we were.  As I struggled to figure out who I was without one particular thing I thought essential to myself, I realized that I had always known.  I am a child of God, loved by the Lord, frailties, insecurities, cluelessness and all.  I long ago stopped caring very much at all what anyone else thought of me, my beliefs, my abilities or lack thereof, because the Lord's acceptance is so much more important and meaningful to me than anyone else's rejection.  While I care very much how I make others feel, these days I sincerely rarely even think about what they think of me, much less let it affect how I feel.  But I realized last year that sometimes I still let what I think of me get in the way of my relationship with the Lord and my personal progress.  I still invest too much pride in strengths that aren't mine to boast of, in weaknesses that aren't mine to fear.  Whatever comes, the Lord will empower me to do good things in whatever way he knows is best, and I need to better trust his judgment and his love.

I have many really wonderful people in my life, and I am grateful to my Father in Heaven for putting those people in my life, or me in theirs.  But more than anything, as I reflect on the last few years, I am grateful for his wisdom in placing one really big, obvious-to-me hurdle and weakness in my life, to draw my attention to others that I have been turning a blind eye to.  I'm grateful that, through the Atonement, I have the opportunity to repent and improve, all the while feeling the supernal love the Lord has for me.  I'm grateful that through the Spirit, I can know how to move forward and be better today than I was yesterday.

I'm thankful for progress, however small and incremental.

Wednesday, November 2, 2016

Love, such as it is

For as long as I can remember, I regularly had episodes of strong deja vu.  I chose to interpret this as a small evidence that life was going the way it was supposed to.  Turns out, my brain was malfunctioning on a regular basis, and it hasn't happened since I started taking medication. But, hey, if you want optimism, I'm your girl.

I have a lot of reasons for optimism.  I have been well-loved by good people, and life has been mostly good to me. I have faith in things much bigger and more beautiful than human foibles and squabbles, things that make the hard stuff and the mistakes less painful and easier to endure.

I made a sort of critical comment the other day, and Doug said, "Wow, you don't have much faith in humanity, do you?"  I laughed and said, "Of course not. Tremendous love for, yes, but faith in? No, no I don't.  I've been told not to put my faith in the arm of flesh, and I've found that life goes better when I don't.  My faith's in bigger things."  Love the people around you, and put your faith in God. Its a pretty happy way to live.

I do have faith in individual persons, to a degree.  I may misread someone's face now and then, but I almost never misread a person's countenance. I am rarely surprised by people.  But Doug has accused me of occasionally having too rosy a view of some people. He's usually been right, and when that happens, it annoys the heck out of me.  I've found that if you believe the best of people, and treat them as though that's who they are, they will mostly live up to it. And when they don't, well, I'm not so hot, either, so maybe we can all just be a little kinder and more forgiving of each other, and we'll try again tomorrow.

But there are some cuts that go a little deeper, some disappointments that sting a bit more.  And once in a while you realize that someone just isn't, and is not going to be, the person you wish they were, and maybe they aren't even capable of it. Not necessarily who they need to be or should be, but who you want them to be, for you.  And maybe that does coincide with who they should be.  You can't argue or lecture or shame or cajole or even necessarily persuade someone to be a different person, especially if you are the one hurt by who they're not. No matter how much it may hurt at first, sometimes you just have to accept that they are what they are, and, with the Lord in your life, you don't need anyone else to be anything for you, as desperately as you may desire it, and even as much as they should be.  You simply need to forgive them for being mortal and love them as they are, with no other expectations.  That may be the only way to have peace, and to love them as much as we should.

I've found that when you do that, suddenly you can see the good things about them a little more clearly, and love those things a little bit more. Resentment can melt into affection, even gratitude.  That person who caused you so much hurt and anger can become someone you adore.  They won't become the person you had wished they were, but forgiveness and letting go of those old expectations can transform you.  You learn to not only love, but like the person they are, instead of resenting them for the person they aren't.

There may be moments when you see something that resembles the relationship you think you want, or should have, or deserve. And it might spark a moment of jealousy, anger, frustration, and/or hurt. Take a step back, take a deep breath and remember that the Savior loves you completely. And that person probably loves you the only way they know how.  That needs to be enough sometimes, and peace only comes when you let the rest go.