Monday, September 8, 2014

Fight, Flight, and Failure

Years ago, within the early throes of my youngest son's autism, I received an email from someone I had been very close with my whole life. We had drifted apart some, due mostly to the fact that I had poured my every waking moment into my son and his diagnosis; and I take full responsibility for that. The letter stated that she couldn't stay silent any longer, and outlined all I had done wrong in recent years in our relationship along with all the ways I had not been there for her.

In what I feel was probably the first mature thing I'd ever done in my life, I did not respond in the way I wanted to. I could have countered each point with how wrong I felt she was. I could have outlined myself all the ways I had been there for her. I could have defended myself, but I did not. Instead, I responded that I was sorry and that I would always love her.

And the person walked out of my life never to return.

I received a similar message from someone else two weeks after my dad died.

Up to that point, 2014 had been rough on our whole extended family. In January we lost the love of our lives - my dad's mother, whom we had grown up just down the street from. In April my dad was diagnosed with metastatic brain cancer and was given less than a year to live. In May my mom's brother died very unexpectedly.

When I received this message, I had been trying to help care for my dad (who had been diagnosed just four short months before), along with my two boys on the autism spectrum who were reeling from this new normal in our lives. I had been trying to help my mom, from an hour away, as well as spend as much time as possible with Dad before he left us.

He ended up taking a quick, sharp turn for the worse in August and died within seven heart-wrenching days - much sooner than anyone had expected. During those seven days, we also had to pull my youngest autistic son out of his school and search for another education alternative. While watching my dad die. In the midst of Dad's death, funeral, etc., I was trying to work with my son's new school daily trying to complete his enrollment status to get him started and keep him from falling further and further behind. It was the last thing on earth I wanted to be dealing with. Actually all of this was the last thing on earth I wanted to be dealing with. Ever.

Also during this time, my aunt (Dad's brother's wife) also took a turn for the worse with her pancreatic cancer. She died three weeks to the day after Dad. Her funeral was in the same room Dad's was. She was buried right next to Dad's freshly-covered grave.

I have tried, to the best of my abilities, to keep all the plates spinning, all the balls in the air without dropping anything - without anything crashing into the ground and shattering. I can't let my mom crash. Or my children. Or my husband. Or my home. Or my job.

But when life gets ugly, your world gets small. Suddenly you are living on the essentials only. I haven't volunteered at my church for years. I haven't been able to do a single Bible study. My friends *never* see me and I mostly communicate with them via text or on Facebook. My laundry is piled up. In the words of the youngest dude, "Our house and yard look like the one in Jumaji." The inside of my house looks like a frat house during pledge week (not that I know what that looks like).

Autism sucks. Disease and illness and dying suck even more. Do you know what else sucks?


This second message I received was not as long as that one years ago, not as defining; but basically informed me of how I wasn't thinking at all of how my dealing with my father dying and my autistic child's most recent crisis was negatively affecting this person. The person let me off the hook because that was what I wanted anyway, wasn't it?

Most people feel like a failure at some point in their lives for one reason or another. I mostly live there because people who have to deal with special needs will drop the ball on something, sometime in favor of dealing with their child's needs and putting them first. It's going to happen no matter what. When you've got more than one child with issues, it happens even more often. Priorities shift on a dime. You are only one person and can only be in one place at one time, and have only one set of arms and one set of legs. You can only carry so much at once, which is why you often see me in constant motion doing three things at one time and going back and forth, back and forth. I joke about my ADD, but the foundation of the matter is, I'm constantly terrified of dropping one of those balls for fear of the result - and a lot of that fear comes from receiving that letter years ago of how inadequate I had been for that one person.

Give me 28 plates to spin in 3 different places at the same time, and something's going to fall. And furthermore, those watching me perform this circus act should expect it, because it's only logical that one person cannot be everything to everyone all the time.

But I'll be dadgummit if I didn't do it again - get told off about how I'd failed yet another person with all my spread-too-thin-ness.

After I commented this morning that, between fight or flight, I didn't have much fight left in me and flight was imminent, my sweet, good friend told me to go read Exodus 14:14, which says:

~ The Lord himself will fight for you. Just stay calm. ~

Tuesday, July 8, 2014

The Social Side of Special Needs.

We live as a society. By sheer definition we must be social, to some extent, to maintain our very lives within this world - especially in a society like America.

For the most part, this very concept is buried so deeply within the nature of how we are brought up from the moment we breathe our first breaths, that it is something most take for granted - this ability to be social - even just on a foundational level.

Do you think about it? Do you even give any thought to how you will function today within the myriad of situations you will encounter, whether it be school, a job, a doctor appointment, a grocery trip, or lunch with a friend?

This society that we live in is far from perfect, but we have made strides in recognizing disabilities and those who suffer from them. There is much work to be done, many eyes and minds to be opened; but we have come a long way. There are adaptive devices for the deaf and blind. There are accommodations for those bound to wheelchairs. Society is recognizing and answering the call for those with obvious disabilities. They clearly need help.

However, those suffering from issues that are debilitating on the very ground floor of how we are to function as humans - socially - are largely ignored. And even worse, not recognized as suffering from any real disability at all.

I have two children on the Autism spectrum - two high-functioning sons who are where they are today because of years and years of hard therapeutic work. But they will never function socially in society like most. No amount of therapy will grow them new, neurotypical brains. It will be a daily struggle that cannot be cured or fixed. Every day. For the rest of their lives.

Just as someone who will be paralyzed for the rest of his life will never run up the front steps of a building if he is late for a meeting, my sons will never hear of an upcoming event at church or be invited to a cookout or school function and just . . . go - no matter how much their hearts long to be able to be a part of things. Because you cannot simply will yourself to be able to do something that other parts of your self deem you unable to do. A blind man, no matter how badly he wants to, cannot make himself see.

Now imagine, if you will, raising a family with this type of dysfunction within it. The simplest of things that other families take for granted are things that we long for. Friend get-togethers. Attending events as a family. Volunteering together. Even worshiping as a family is no longer an option. We are able to get together with friends who live next door frequently, but why? Simple - the boys usually don't join in. Even those they once were comfortable spending time with are falling by the wayside. As they grow older and social cues are more and more important and peer relationships are harder and harder, their area of comfort becomes smaller and smaller.

Meaning? The more social life gets, the more problems they have and the more isolated they become. And the more isolated we become as a family - which is why special-needs parenting is so very lonely; and special-needs parenting of children with "invisible" disabilities is even worse.

There are sometimes surprising leaps in the right direction by one son or the other, but figuring out the circumstances under which this particular social situation was something they could handle is about as easy as putting together a 12-million piece puzzle. Blindfolded.

Watching others' children of the same ages as yours without these types of issues blossom and be able to have experiences that will grow them in amazing ways is difficult to say the least. Taking my boys to Walmart some days ends with me near tears and them out of sorts for hours. Yes, hours. So you can imagine how going on an amazing mission trip or youth group outing is pretty much out of the question. This breaks my heart because they have so much to give. They are amazing boys with such beautiful hearts that go unseen and unheard by most because they do not fit into the mold - and there is no one building special ramps to help them navigate the situations.

And when I cannot make someone who sees them every day try and learn and understand their pain and how hard they work, how can I possibly do that with those who are not family? To say it all feels unfair is the understatement of the century. 

When others are talking about this accomplishment and that great experience of their children, I am just trying to get one son to please consider coming to the church we've been members of for eight years and get the other son to please not start to panic about school starting a month from now.

So the next time you wonder what is up with so-and-so whose child has some sort of thing you never really understood going on ("Just make him mind and quit coddling him, for crying out loud ..."), please know that trying to simply hold our families together is largely the goal of special-needs parents much of the time.

Wednesday, April 16, 2014

Thank You, God, For Keeping Me From Getting Arrested This Morning.

It's The Little Things.

I've been taking 11-year-old Seth to school lately when I am able to. It's a small thing that means a lot to him. The bus is loud, which often discombobulates his autistic mind - and this is not a great way for him to start out the day.

Yesterday morning, life took a tumble for him as his mind decided to download all the emotions surrounding my dad's recent diagnosis of multiple brain tumors. Right there in the drop-off line. We spent the next hour in the parking lot.

Life has been big lately for our family. Uber-big. This situation with my dad is only a week old, and the whole cotton-pickin' family is still reeling and processing. We don't even know the scope of it all yet, but will find out more in a few days.

Since life has been so overwhelming as of late, it's the little things that are taking over. Good and bad. Little good things seem awesome; and little bad things seem like mountains to climb. One dog suddenly deciding to chew things out of the blue feels like the world is sending me yet another huge thing to figure out and deal with; yet, all green lights driving down a stretch of road feels like God is smiling down on me today.

This morning Seth asked me to drive him to school again; and, a tad fearful of another epic meltdown, I was more than happy to oblige.

All went fine until it was Mom who had to head a meltdown off at the pass.

As we sat in our old Honda CRV with the broken gas gauge and broken CD player that clicks (exactly 16 times every time you turn on the engine), we had turned right from the light into the line in the parking lot and were waiting for it to start moving forward as kids were allowed to go inside the school. Patiently waiting, as we all must do ...

The sh$t almost hit the proverbial fan when another parent, in all of her entitled glory, drove straight through the traffic light instead of waiting (since the line was not moving yet) and nosed her shiny, silver Mercedes SUV right. in. front. of. me. Without so much as a glance, wave - nothing. There were cars waiting behind me - still at the light waiting to turn right as I had done, cars waiting to turn left into the school at the light, and her waiting to go straight. But apparently, she doesn't have to wait for the line to move like everyone else.

Um, E.X.C.U.S.E me? 

You don't really understand the term "blood boiling" until this happens to you seven days after your dad was found to have at least seven tumors in his brain (and others elsewhere); two days after he starts whole-brain radiation; two days before you find out a whole diagnosis, treatment plan & prognosis; one day after your son had a complete emotional meltdown in this very parking lot when his autistic brain finally let go of all of the emotion of recent events; and 10 minutes after you just found the ornery dog chewing on the brand new rug you just put down.

Turns out that steam really can come out of your head like in the cartoons.

It also turns out that God's hand really can come straight out of heaven and smack you. As I ramped up to unleash one of the most unhealthy, unparentlike, ugly strings of hateful rants of rage I've ever felt in my life, these words came out of my mouth. And, so help me God, I did not think them or know I was going to say them:

"And this, Seth, is when we show grace."

I think it even startled Seth, because those words did not at all match the fury upon my face or the previous sentence that went something like, "Oh you did NOT JUST DO THAT!"

Supernatural intervention is the only way I can explain my not getting arrested in Hazel Dell Elementary's parking lot this morning.

As I drove around the parking lot to leave after dropping Seth off, even though God had spoken through me just moments earlier, my ugly human self glared at the back of that woman's nice, shiny SUV all the way until she turned one way and I went straight. I spat out loud to myself, "Let. It. GO."

I decided that an expensive coffee was in order. Because God had kept me from beating another human being with my bare, scrawny hands. I think that's worth a $4.52 celebration.

When I got to this unnamed coffee chain, the line was epic. So I decided to just go inside, which is when I realized that:

I'd forgotten to wear shoes. Who forgets to put shoes on? So around this parking lot I went, back into the epic line. It's the little things. And right now, a coffee that I didn't make sounded like a million dollars.

As I waited, a woman pulled in opposite of the line from another parking lot attached to this one. As soon as I could get her attention, I waved her in front of me knowing that there probably wasn't even room behind the line, as it appeared to stretch to the road. She waved to thank me, I smiled and posted my stupid foot picture on Facebook. Because I always share my stupidity with the world.

When I finally got up to the window, I was reaching out to hand the gentleman my card to pay when he said, "The lady in front of you paid for your order and said to thank you for being so kind."

And with that, I remembered once again - It's The Little Things.


This segues nicely into one other thing.

About a year ago - I began paying for the person's order behind me in the unnamed coffee chain line about once a week. I'd like to say that I'm great and this was my idea, but it was my middle dude, Joel, who started this.

I have to pick him up from school every day because he attends a small charter school with no bus service. On our way home one day, we decided to treat ourselves to an unnamed coffee chain coffee. When it was our turn to pay, he said, "Mom, we should pay for the person behind us and maybe that will make them want to do something nice for someone else and it could be a chain reaction." Well, who can say no to that? Hence, our once-per-week "buy behind."

Sometimes it's cool to see it in action. Once when my BFF, Susan, gave me a $20 unnamed coffee chain gift card, when I went to use it, I told the cashier I wanted to pay for the person behind me. She said, "Well, their order is $21.52." I told her that was fine - and went home and told Susan her gift had paid for me to "buy behind" today. That was a cool one.

Another time, I had the person catch up to me on the road and thank me.

Today, I had the opportunity to know how it feels. And now I feel even more determined to keep up our once-per-week tradition that my son started.

The Little Things can be quite big sometimes.

Sunday, March 23, 2014

Where Is Your God Now?

Ever heard that term? People throw it around when things go wrong to try to undermine a Christian's faith when they don't see what we see, feel what we feel, know what we know. And you know what? That's fine with me.

If I don't get what someone else keeps talking about - especially when it is so subjective - I question it as well. We are brought up in this country, for the most part, on science and facts. If you can prove it, then it is. Prove it. PROVE IT.

Think about it. Our education system pushes this line of thinking from day one. We learn rules of grammar, mathematics, writing, science - everything. And then we must "show our work" to prove why what we did was done a certain way and wasn't just pulled out of the air. Because we can't possibly just know something to be true. We must prove it. 

So are we really all that surprised as Christians that we are questioned about the validity of our beliefs, our faith, the basis for our knowledge of and trust in Christ? And are we further shocked that when our lives and world aren't "perfect" it makes non-Christians question where our God is now?

Does it ever make you wonder where so many non-Christians get this idea in their heads - that Christians go on and on about "our God" and then sit silent when the world goes sideways? I'll tell you exactly where so many get the idea - from Christians.

Christians who work so hard to portray their lives as awesome and perfect - to make themselves seem so perfect - and sit in judgement over others for their choices. They are going around trying very hard to prove their faith.

Are we forgetting that God gave us free will to makes those choices because he wants us to choose him? He doesn't force himself on us for a reason, and we shouldn't do that to others, either.

Yes, I'm a Christian. A Christian who fails, screams, wants to give up, talks about my faith nonchalantly, often says the wrong thing, has to apologize for my behavior daily ... I'm a work in progress. And I'm a Christian. And I believe that none of those things makes me any less of a Christian than another, it just makes me real. I don't think real people with real issues and behaviors and downfalls are necessarily misrepresenting Christianity. We are all the forgiven. We are all works in progress until the day we leave this earth.

But those who wear their Christian faith alongside hateful judgmental actions, non-acceptance of those who lead lives they do not condone, or simply putting forth an image of righteousness and hiding flaws that make them real - that absolutely is misrepresenting what Christ was all about when he walked this earth and what God tells us we should be doing here.

Christians are helping create the "Where is Your God Now" attitude. 

Where is my God now? Right here. Over there. Next door. In the White House. And yes, in the middle of wars and genocide and crime and impoverished countries. He is in the homes of gay people and straight people and people who don't go to church and people who eat crunchy peanut butter on pancakes and put ketchup on ribeye steaks. He is in prison cells. He is in schools. He is there - in those who choose to believe - within all of those places, not just with those living seemingly great lives making all the "right" decisions in this life.

We live in a fallen world, and we are flawed people - each of us. So instead of trying to put forth your "perfect side" to prove your Christian faith, just live it. Show how your faith stands through better or worse. Smile through the crud if you can; and make them ask you why, why your crazy self is smiling.

Love through it. Try to love like Jesus did, not conditionally and based on whether you agree with the person. Just love to show why you are a Christian. And when you break down, show them you know your God is still right there by getting back up and continuing to praise.

And when you really, really screw up, forgive yourself and try again; because God will forgive you.

Just ask.

Then show that same grace to someone who hurts you. Don't sell your faith to someone like a box of Girl Scout cookies - live it for them.

Show them where your God is.

Wednesday, January 8, 2014

We Don't Always Wait Until They're Gone.

Sometimes, we really do know what we've got when it's right in front of us. Every. Single. Second.

I have my grandma's hands.

It actually hit me one day a few years back when I looked down one day and saw my grandma's hands in my lap. Except she was 65 miles away.

And her elbows. And the way she walks. So does my dad. I always hated how that looked in a picture or a video of myself until it dawned on me that it was just like Grandma.

I got a call from my mom one day years ago and she was gushing about a photo she, Dad, and Grandma had come across. It was a photo of Grandma when she was around 15 years old. Mom went on and on about how amazed they were that it looked so much like me. I was intrigued. The next time I was home, they showed me the photo and I honestly didn't see it much. I saw it in the way she stood (remember the elbows?), but that's it.

Right now, I'm praying that 1.) they still know where that photo is, and 2.) I see it this time the way they did.

A couple of other things that she graciously passed along to me. My well-endowed chest (that was rendered half its size four years ago thanks to modern medicine), my ability to fall into hysterical crying fits of laughter at the speed of light (often no one knows what I'm laughing about yet when I'm already crying and can't talk), the I-have-a-story-for-everything part of my personality, and my issues with anxiety and depression. And I'll take them all with open arms if it means living to become half the person she was.

She showed me that strong people have personal issues that don't have to make them less. She showed me that you can change the world one person at a time without flying off to other parts of the globe - and that doesn't make you less, either. She showed me that grace is for every person you set eyes on, and that it's never too late to learn and embrace something new - even if you don't understand it.

When Sean and I had Alexx 23 years ago before we were married, she could have hammered down some hard Christian values on us - and treated Alexx like he was not supposed to be here this way. But she loved that baby - and Sean and me - to within an inch of our lives. She supported us emotionally, financially when she could, and even helped make it possible for me to get back to school by keeping Alexx so I could attend classes again.

When Seth (now 10) was in the worst throws of autism, she never judged. She learned. And loved. She even loved my bully dog (Josh) after learning he was "one of those pitbull things that seems to always attack people" because she wasn't too old or stubborn to know that you can always be wrong - and can always admit you were wrong about something and learn the truth.

A few weeks ago, Josh and I were playing on her living room floor and he was wiggling his little butt and unique, curly tail up against her in her chair and she was loving on him - and I just wondered if there was anyone or anything this woman wouldn't accept and love when put in front of her.

When I was little, I loved the chest of drawers she had stored in her garage that her father-in-law made when he and my great grandmother were married and "setting up housekeeping." Grandma tucked that fact away, and many years later when Sean and I moved into our first apartment, she gave us that chest and it has meant the world to us every day since then. We have always called it "the Grandma chest" and it sits in our foyer - first thing people see of our home - with a photo of my great-grandad, great-grandma, and my grandad and great aunts as children.

I grew up four houses away from her and she and my parents still live in those houses today. So my boys have also grown up with her four houses away from Nana & Papa's house. They also grew up "running down to Grandma's" to play in the yard, play cards with her, watch tv with her or spend the night. In fact, Joel & Seth (15 & 10) have spent more time with her in the last few years than I have been able to because they've spent half their weekends there.

Today I am selfishly in mourning. The loss is on this end. She's not missing a thing.

I cried this morning out of pure joy thinking of her and Grandad being reunited in heaven after being apart for 41 years. She has waited and prayed and loved others for 41 years without him. She has seen all of these grandkids and great-grandkids - who abound from their love for one another - come along, grow, live, love, accomplish - all without him. She lived an entire life with him and an entire life without him - and she never gave herself to anyone else. She waited. For him.

She waited with the great faith - that she passed along to us - that God is true, that his words are true, and that she would live in heaven with him again one day.

I have a lifetime of things to say, but some things are best left in the heart to stay where they are the greatest comfort.

Death is hardest on the living left behind. I will miss her so much it will feel like a knife sometimes, but that just means we were doing it right. And when I think I can't stand that she's gone, I'll look down and see her hands sitting in my lap.

Sean, Grandma & me at my dad's baptism a few months ago.