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

Adjusting

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.

Sunday, October 23, 2016

Moments of Grace

We needed to run some errands today, so we did something we almost never do and went to multiple non-grocery stores.

At Lowe's, the Christmas stuff is already out.  I used to be one of those Christmas-season-doesn't-start-til-the-weekend-after-Thanksgiving people.  As years with my small children fly by, I've come to realize that stretching out the season that "engages the whole world in a conspiracy of kindness" is something I quite like. Christmas carols are totally an option by November first. We've never done big Christmases, toy and present wise, but we've alway decorated as much as our meager budget would allow, and spent a lot of time making little crafts and decorations, and doing seasonal activities together. As they've grown, I've just realized that the years with my little ones go by so fast, and there are so few of them, that I don't mind at all stretching that special time into two months instead of one.  So, even though the Christmas stuff showing up immediately after back to school sales makes me a bit crazy (craven commercialism much?), by late October it just starts to light me up inside.

The kids were excited when they saw all the Christmas stuff, and spent more than half an hour exploring it. I came across a 2ft tall resin Santa, and was instantly, painfully, dreadfully homesick. Though it really looked nothing like hers, my grandma used to have an old Santa like that that she would sit on a table next to her front door inside her porch, so that he greeted all her Christmas time visitors.  Michael and I helped grandma decorate her house for Christmas every year of our childhood, and when we were little, she had to haul that heavy statue in because we weren't strong enough. By the time we hit middle school, the roles had reversed, and one of us had to carry it in for her.  We spent nearly as much of our lives with her as we did at home, and decorating for Christmas was our job.  She didn't put up a tree or a decoration until we came up to do so with her.  I know a lot of people who think the Elf on a Shelf thing is stupid (which I totally get, and respect), but those two little elves floating around my house make missing her a little less painful at Christmas time. She had a whole collection of elves of various sizes and appearances that she had had since some of her children were at home, and we'd pin them up on the drapes all around her living room.  So I sent a pic of the statue to my brother and told him I was tempted to drop $80 on this stupid Santa to put by my front door, just because I knew I'd think of Grandma and smile every time I saw him.  Christmas is always magical, but there is nothing that will ever compare to childhood Christmases with Grandma.  Until I got married and had kids, I didn't believe I'd ever love anyone as much and I loved Mom, Grandma, and Michael, and, though I adore my entire family, many of my happiest memories are just Michael and I and Grandma, at Christmas time, in her cozy little trailer.

As I stood there, feeling terribly stupid that I was almost in tears over a 2 ft Santa statue, I realized that that is probably how my kids, and all my nieces and nephews, feel about my mom and her house.  My mom is so good to her grandkids, and I honestly don't know another grandparent that invests that much time in that many different grandchildren.  And as I stood there missing my grandma with a horrible ache that waxes and wanes but never quite goes away, I realized that, despite the fact that in a few weeks she will have been gone for 12 years, she is still very present in all our thoughts.  Our children know her.  And she is very much alive in my mother, in her affection and attention to her children and grandchildren.

And I was reminded again (as I have been, often, in the last few years), that I am incredibly fortunate to have been raised by strong women who always put their families first.  I am so grateful to my mom and my grandmas for nurturing me when I was a child, and through my young adulthood.  I am continually grateful for the way they have taught me to be a mom, and the wonderful examples they've set for one day being a grandma.  I am so grateful for the presence they have in my children's lives, my grandmothers indirectly, and my mom directly.

The last few years have been challenging.  There's been more than enough heartbreak and hurt to go around.  I have, at times, given into to pessimism or frustration.  But that flood of warm, quiet memories burst open a piece of my heart in the middle of a hardware store, and reminded me that things can work out.  It reminded me of the examples that have been modeled to me throughout my life of how I can love the people in my life a little better.

A weary world rejoices.  Sometimes, the spark of hope for a weary soul comes in unexpected moments and places.  For that, I am tremendously thankful to the Lord, and to the people he has bound me to. 

Wednesday, October 5, 2016

"We are probably those referred to as 'our brother's keepers,' possessed of one of the oldest and possibly one of the most futile and certainly one of the most haunting instincts. It will not let us go.”  
~Norman Maclean

I read A River Runs Through It for the first time when I was 16. Because of where I was at in my life at the time, and what was going on around me, I fell in love with it and it became a favorite. 

There are battles that aren't entirely ours to fight, but that we can't quite walk away from either.  "Strengthen thy brethren" is an exhortation that's very close to my heart, but figuring out what it means in specific situations or relationships can be challenging. 

When it was time to go back to school, the reason I chose nursing is that I hate just standing by when someone is hurt. I need to do something.  If I can fix it, or at least help ease the burden, I feel like maybe things will be OK. I've gotten better at accepting that sometimes all you can do is hold someone's hand and acknowledge the painful reality that they hurt and it can't be fixed, at least right now, and not shrink from that.  But when it comes to spiritual pain, I still struggle to accept when the answer is simply "Watch and pray". 

I forget that that is doing something. You can't give someone your faith. You can bear your testimony, but you can't control whether or not they receive a witness.  You can't take away their doubts or their fears or their sins. You can do everything you can think of to give them love, but you can't make them feel loved. 

When my most important people are broken, lost, hurting or angry, I want to scoop all the little pieces of their broken hearts into my hands and mend them back together. But I can't do that--that is the domain of the Savior, and the Savior alone.  I have seen so much heart crushing of late, and a crushed heart is a deeply difficult thing to hand over, because the very nature of the injury makes it difficult to believe that there is a remedy. So we cover it over with cynicism or anger or bitterness or doubt.  At the exact moment in our lives when we need so desperately to turn towards the things of eternity, we turn ourselves farther away from them.  

When someone we love is facing away from the light of joy, we can't turn them around. All that we can do is be kind, try to exercise love and patience and kindness, do all we can to be one of the lights along the shore, so that when they're ready to come home, there is a familiar face to walk with them.

Tuesday, October 4, 2016

Brain Quirks

A Facebook friend shared a post about left brain/right brain functions and cooperation, which was more about the true physical and functional differences than just the usual pop culture version of those ideas. Some of the emphasis was on how much one side needs the other for proper function, and some of the problems that result when one side becomes too dominant.

I always had trouble with the left brained/right brained personality type ideas. I've always thought of myself as very right-brained in some ways, preferring stories and ideas to details and facts. I've always been fairly feelings-driven, and enjoyed the freedom to be creative. On the other hand, I have always lived in language, being in love with reading and writing for literally as long as I can remember. I've always had a deep need for order to feel comfortable. So I assumed I must be fairly right/left brain "balanced", if you will, but on little self-assessments over the years for various classes and such, I always tested as much more "left-brained".

When I was diagnosed with epilepsy last year, my neurologist told me that, based on where the pathological activity manifested in my brain, and the symptoms that I experienced before, during, and after seizures, it was likely that my Broca's area (the primary area responsible for processing language into speech, usually in the left frontal lobe), and possibly Wernicke's area (where, we think, our understanding of both written and spoken language is processed) are on the right side of my brain, rather than the left. That's not unheard of, but it does tend to mean that not all of my neural activity fits neatly into the normal dichotomy, or its related cooperative functions.

So I'm not crazy. My brain just has atypical structure.

Wait. . . .

Friday, August 26, 2016

And now, for something completely different

At some point in the next week or two, I will finally be replacing my long-finicky computer, and will thus have somewhere to upload pictures, so I'll post about the kids' 4H fair. In the mean time. . .

Doug left his job at the city in late June.  We haven't missed it. We took off on our two week Utah-California-Nevada-Utah-again adventure, with no work or school hanging over anyone's head. It was fabulous. I took my NCLEX the day we left (we drove up to Helena, I spent a little over a half an hour in front of a computerized test, we made a quick stop to feed everyone, and then drove straight down to the Tanners' house in Pleasant Grove), and then I started work two days after I got home.

School started for me on Monday. So now Doug is taking apart chairs and car seats and whatever else and putting it all back together again completely new, learning the ropes of business, and looking at long term expansion/absorption plans, while I work full time nights on the main floor at the hospital, and now add 18 credits of mostly research and writing courses. The kids start school just after Labor Day. I'll be home from work in time to fix hair and make sure teeth are brushed and get everyone off to school, then go to bed, and will wake up just in time for them to get home from school. On the nights I don't work, I can do homework while my whole house sleeps.  Most weeks days this summer, Doug has taken one or two kids at a time to his shop with him. When school starts, though the kids will be at three different school buildings, all four of them will be within walking distance of both the house and the shop. The little girls will be three blocks up from Doug's shop. Keilana will be one block from home. Dylan will be in the middle.

It's a completely new lifestyle. Both parents working. But both of us with enough flexibility that one or both of us is available pretty much at all times. It's almost certain that, though neither of us intended to be, we will be in Anaconda for at least 5-10 years, and I like the idea more than I thought I would. We're making the adjustments, and we're happy.  All of this has happened very differently, and in some respects so much more rapidly, than we had imagined, but we have seen the Lord's hand blessing and guiding our life.  He had provided avenues we never could have known even existed, much less were an option. We are grateful and busy and satisfied and overwhelmed all at the same time.