Lavish Love

See what great love the Father has lavished on us, that we should be called children of God! And that is what we are! I John 3:1

My life has changed so much over the last 18 months.

In December 2012 we moved into a low-income, primarily black neighborhood. There are people in our neighborhood who live without power, even during the winter, because they can't afford it. Many children will not receive Christmas presents because their families simply don't have the extra money.

In March 2013 we had a miscarriage. The pregnancy was planned, I was five weeks along and though I had only known about that tiny life for one week, he was already a part of our family. Losing him tore a hole in my heart.

Then, in July of that same year we had a second miscarriage. The pregnancy was also planned and she made it to seven weeks gestation. During the three weeks we knew about her we prayed, feared, hoped, and waited. After we lost her my heart temporarily lost its ability to hope in the goodness of God.

In October 2013 James was diagnosed with autism spectrum disorder and in March of 2014, 12 months after our first miscarriage and the day before our second lost baby's due date, Liam was diagnosed with autism as well.

I entered into 2014 wholly broken. My trust in The Lord had been shattered. I showed up to church with a smile on my face and a heart that was hard as stone. And I realized that something needed to change. I decided to take a break from church in order to work on my relationship with The Lord. My incredibly supportive husband, Nathan, continued to attend church and since he brought the boys with him, I was given a consistent weekly time to talk to (rail at) The Lord.

When I have shared about my intentional break from church in the past, some people respond by commending me for being deliberate, like taking that time is a testament to some innate goodness or spirituality in me. But that's just not the case. I chose to allow the space to get things right with The Lord for two reasons: 1) I'm a big chicken. I've always been in the church and being a Christian is a core part of my sense of identity. Leaving The Lord or the church would force me to re-define myself and that scares the mess out of me. 2) My husband is in ministry. This is his career and I know that The Lord and church will always be a part of our family rhythm and for him to succeed in his career means that I need to get straight with Lord. These are admittedly selfish reasons. I was in a pretty self-focused phase. It is a testament to the goodness of The Lord that he was willing to work with my self-centeredness to bring me back to him.

Over the course of around four months during the beginning of 2014 The Lord MET ME. He pursued me, he answered the questions that I screamed at him, and he loved me. And he invited me to trust him again. He asked me a question: "Am I enough for you? If I am all you have... if your kids die or your husband leaves you, if you have another miscarriage, or if you don't and that baby also has autism, will I be enough for you?" When I got to the point, in the midst of kicking, screaming, crying, and praying, that I could say "yes" to that question, we decided to try again for a baby.

I have shared much of this information in previous posts. But I share it again because those experiences have heavily influenced my perception of the Lord's blessings. If material blessings are from The Lord, does that mean The Lord doesn't care about the people in my neighborhood who don't have material blessings? Where was he when our children were dying? And so I've pushed, hard, against that mindset. But refusing to see some earthly blessings as being from The Lord can be equally as damaging, and we might miss the heart of the father for us.

Recently, some of my family contacted me and offered to fly Nathan and I to Colorado for a vacation. We've never had a real vacation and they wanted to bless us in that way. Upon our arrival in Boulder, we were taken to a house whose owners are out of town for the weekend. We were greeted with food to prepare for dinner, food for breakfast the next morning, a movie night basket, and personal letters from some close friends and family who wrote to encourage and love on us. We have been overwhelmed by the generosity and thoughtfulness of our hosts, whose desire is to love on us with the love of our Heavenly Father.

Their desire is to share the heart of the Father with us. And I find my heart softening toward him once again. Maybe material blessings can be a glimpse of the Father's heart for us but since our world is not fully redeemed we can also be sure that we will face hardship and suffering. The two are not mutually exclusive. Yes, we live in a broken world and death is a reality that no one can escape forever. But sometimes when we receive gifts we can begin to recognize that the same father who welcomed the prodigal son home with his robe, ring, and a feast welcomes and cares for us. Sometimes those gifts remind us that we have been adopted as sons and we have a father who loves us more deeply and truly than we could ever imagine.

Just days after we found out that I was pregnant with the baby I'm still carrying, I purchased a maternity sweater on clearance at Target. It was a scary purchase. "What if I never get the chance to wear this sweater? What if it stares me in the face as a reminder of a lost pregnancy?" But I made a choice to hope. For me a choice to hope wasn't the same as a belief that everything would be ok, but it was simply hoping they would. And believing that if they weren't The Lord would still be with me.

This weekend, in the cool Colorado mountains, I had my first chance to wear that sweater. As this baby grows, kicks, and moves inside of me and we are gifted beyond what we could have imagined, the truth of the Father's lavish love for me sinks deep in. And the ultimate truth of his lavish love is not found in our vacation or this healthy baby girl, but that we are considered his sons and daughters. These gifts are just glimpses into that amazing reality.

Autism: what it is and what it isn't

James (our 4.5 year old) was diagnosed with autism 10 months ago. His younger brother, Liam, (3 years old) was diagnosed 5 months ago. During that time I cannot tell you how many times I have heard people tell me how "normal" they seem. While I understand that most people have pure motives for sharing that observation with me, hearing that my kids seem "normal" so frequently has done two things to me: 1) it puts me in the position of feeling like I am constantly "defending" their diagnoses and 2) it has made me realize that the average person has no idea what "autism" actually means.

To qualify for an autism spectrum disorder diagnosis, a person has to present functional impairments (meaning that the impairments interfere with routine, age-appropriate expectations) in three areas. Those areas include Reciprocal Social Interaction, Communication Skills, and Restricted and Repetitive Behaviors.

Reciprocal Social Interaction evaluates things like eye contact, emotional expression, sharing toys, and joint attention (when you observe something together, e.g. when a child shows you a toy or a book because they are excited about it). Because autism is a spectrum disorder, a child does not have to have severe impairments in each area observed for the "Social Interaction" category. One child may display appropriate eye contact but may not be able to express his emotions appropriately. Or the impairments may vary in severity. Liam will engage in eye contact when he is excited about the activity but he will refuse to engage at all when he has lost interest in an adult-directed activity. Both Liam and James will engage in parallel play and some interactive play but for the most part only if that interactive play is physical in nature, like chasing each other through the house.

Communication Skills evaluates appropriate verbal communication. This category is surprisingly tricky to people who are not familiar with autism. What most people don't know to look for is the difference is "spontaneous speech" and "scripted speech". "Scripted speech" is often referred to as "echolalia." Liam's communication delay is fairly obvious; his speech is at an 18-month level and he often remains silent when people greet him or ask him how he is doing. James's delay is much less obvious; when he was first diagnosed it was common for him to repeat the last few words of a question. Many people (myself included) assumed that he was answering them. Teacher to James, "Would you like to play with the trains or the blocks?" James's response, "The blocks." Sometimes his responses might actually line up with his preferences, but sometimes they don't. And other times the disconnect was more obvious, me to James: "James, who is that?" James: "Is that."  James and Liam also show a great capacity to memorize lines from television shows and frequently used expressions. James is able to insert those phrases into conversation in ways that make it seem that he genuinely understands what he is saying. It takes a close ear and a keen mind to discern that he is often not aware of what he is saying. It's more like his brain has files of social situations and when he needs to take a mental "short cut" he just looks for a file related to his current social situation and inserts that comment. [We were once at a restaurant after a long week of travel during which James spent a whole lot of time playing with kids his age--read, he was wiped out socially. While we were waiting on our food to arrive, James got up from his chair and started to walk away from the table. When I asked him what he was doing, his response was practically monotone, "I'm just going to slip into the kitchen and have a word with the chef." He was quoting "The Emperor's New Groove" which we had watched frequently that month.]

Restricted and Repetitive Behaviors refers to a person's need for things to be a certain way. This can affect their style of play, their need for a rigid daily schedule, their ability to be flexible during transition, specific and/or obscure interests, and many other things. For Liam this category is fairly mild. He has preferred ways of playing with toys but can be redirected with mild to moderate frustration. If we allow him to play without direct adult interaction his play can become very focused and very repetitive. For James this category is a little more noticeable but only if his caregiver has the eyes and ears for it. James becomes distressed when his peers play with toys the "wrong way", e.g. putting trains on a road or cars on a train track. On the surface, this looks to many people like he is having trouble sharing, when he is actually in distress because things aren't the way his mind asserts they "should be." We have to be careful how we word things when we speak to him or we will give him an incorrect expectation of his day. Sometimes he is easy to redirect and sometimes we have melt-down city. Every day is a new adventure

Obviously, this is a brief overview, I'm not an expert and my kids are only two kids. They are not THE picture of autism. But what I hope to impress upon you is that these are three rather broad categories that can present very differently in various people. A person can be accurately diagnosed with autism and be very, very intelligent. Their restricted and repetitive behaviors can give them a focus to learn, frequently about a specialized or favorite topic. For other people, the impairments related to communication skills are so severe that they are unable to grasp any verbal communication--they cannot understand what people say to them or produce speech in response. When the communication impairment is that severe, a person with autism may not develop past an internal age of 12-18 months.

Many people have asked me whether my kids might "grow out of" their autism. The simple answer is "no." If they have been accurately diagnosed, they will never grow out of autism. Autism means that their brains interpret the world differently than "typical" people and that will never change. Many people with autism are able to learn skills and strategies for navigating the world around them, in what I think may be a similar way to the ways that people can learn and become fluent in a second language. There may come a time when you are able to "think" in that other language as if it were your first but it takes a lot of work and a lot of practice.

Sometimes I feel like our (my family's) whole world revolves around autism and I can't help but wonder if I talk about it too much. I never want to over-focus on how hard it is and lose sight of how wonderful my kids are but I also don't want to shy away from being honest about the difficulties that we face as we do our best to raise our kids. Mostly, I feel like the more information I can share about what autism actually means the closer we will be to autism acceptance.

Maybe my kids will play with your kids and you will be able to coach your kids through how to respond to James when he gets a little intense and says to your child, "Excuse me Sarah, excuse me Sarah, excuse me Sarah, excuse me Sarah." Or maybe our family will visit your family and you'll be able to anticipate the reality that my kids don't understand verbal instructions the way their peers of the same ages do... meaning they might break anything that is breakable and within reach so you'll move anything of value out of their reach, not because they are "bad kids" but so that we can relax a little and focus on having legitimate conversation. Maybe, just maybe, sharing this kind of information with other parents will help pave the way for our children's generation to operate out of understanding and acceptance rather than fear and skepticism and that one day my children will form deep friendships with some of your children.

The Cat and the Bag and All that Jazz

A few months ago I read a blog post/article that had been posted on Facebook. I don't remember what the point of the article was I just remember the author sharing that in her family it was a running joke that anytime they needed to reference a metaphor they would shorten it a certain way. For instance, instead of saying, "That's a bit of the pot calling the kettle black, isn't it?" they would say, "The pot and the kettle and sh*t!" Well this is my adaptation. The cat and the bag and all that jazz. It's time to let the cat out of the bag.

We are expecting again.

We've just made it to the second trimester and are looking forward to the in-depth anatomy scan in late July that will both reveal gender and any possible major anatomical abnormalities.

We are due December 23 and in a lot of ways this pregnancy is a huge part of our year of restoration.

But assuming that everything goes well and we welcome a healthy baby around Christmas, this will not be the restoration of our family. We lost two babies who will never be replaced and our family will not be whole until we are reunited in heaven, assuming that all of the children we raise on earth make decisions to follow Jesus.

This is, however, a huge step in our restoration of our relationship with The Lord. In the midst of the intense fear of the first few weeks (the weeks in which we lost our two little ones in my last two pregnancies) we discovered that our hope in The Lord as a good God is now deep and true. I remember praying, "Lord, I know that you are capable to intervene on our behalf and protect this baby. And Lord I ask that you would, I ask that you would be moved with compassion on our behalf. But I will not stake my belief in you as a good God on your willingness to intervene for us."

Just days after we found out that we were expecting I had the opportunity to be a part of some prayer ministry at our church. Up to that point I felt like I had been able to hold in tension my very real fear of another miscarriage with my trust that The Lord is with me and his grace is enough for me no matter what happened. But it was taking all of my brain power to do that. When I left I felt like the weight of the intense fear had been lifted. There were no promises and I still have no promises of a healthy baby but I know without any doubt that The Lord is present with us in our joy and he has been with us in our sorrow.

I'm reaching that awkward stage of pregnancy where I'm showing enough to make people wonder if I'm pregnant but not enough that people will ask. And I've found myself hesitant to share our big news. I'm not bursting at the seams, excited and unaware of the ways that our pregnancy might yet go wrong or for the ways that other people around me are presently hurting--with the ache of their own loss or the pressing longing for their own children. I find myself wanting people to be excited for us but also wanting to explain to them that we are still scared and that we still miss the babies that we lost. . . but at the same time I don't think I need to share about our miscarriages with anyone who notices that I'm pregnant. So I find myself in a mental dilemma. For now when I tell people who are already aware of our miscarriages I just explain that we are excited and also nervous. It's getting more real as my belly grows. And to those who aren't necessarily aware I try to just accept their congratulations and let it rest there.

I also know that there may be people out there who see our situation, having two kids on the autism spectrum and wonder what the heck we must be thinking. And to a certain extent I would say that this is our decision and if there are any people who have a place to speak into our decisions to grow our family or not, the list of those people is very short. But more than that, I would say that my kids are amazing, full of joy, and they teach me so much every day. I wouldn't trade them for anything and I know that I will feel the same way about this new baby whether he/she is on the spectrum or not.

I think there have been a few people who have struggled to know how to respond to this news. Since this is my blog I'll just take the liberty of offering a few suggestions to anyone who might be unsure. Please avoid anything that attempts to diminish the hurt or pain of our losses. . . things like, "See it all worked out for the best," or "God knew you needed this particular baby," make us feel like we are wrong to mourn the death of those children. On the other hand, "Congratulations, we'll be praying for your family," is a perfect response. "We're so excited for you, we'll be praying for the health and for the Lord's presence and guidance for your family," is also a good one :)

We are so thankful for each of the people who read this blog, who ask us how we're doing, and who have walked alongside of us as we have mourned and as we rejoice. Thank you for being a part of our journey.

Homecoming

I haven't posted on my blog in awhile but it's not because things aren't happening. It's just that one of the biggest things isn't something that I'm ready to write about publicly. So I've been biding my time, waiting for the time when something came up that was both worth sharing and appropriate for sharing.

I'm planning to go to church tomorrow.

It's been six months since I've been to church and honestly, I'm nervous. I wrote about my break from the church in mid-January. I was bruised and broken from the losses we suffered in 2013 and church became a place where I felt increasingly bitter toward The Lord. I frequently heard a message that implied--never explicitly, only implicitly--that people who are faithful receive blessings and miracles. As someone who was in the midst of suffering and loss my mind and heart couldn't help but fill in the words expressing the other side of that coin--people who are not faithful, suffer. And let's be honest. Every one of us has been unfaithful in some way. I couldn't--and still can't-- honestly say that I've been faithful in every way. My grief combined with the knowledge of my own fault and made me bitter toward a God that would punish me by allowing my babies to die.

As my heart hardened toward The Lord I became comfortable with simply going through the motions. I showed up to church and our small group every week with a smile and a, "it's going ok." In January I realized that something needed to change and the best way for me to do that was to take a break from church. I've spent as many Sunday mornings as I could in the quiet hours when Nathan and the boys were out of the house to process my grief and allow The Lord to pursue me. And he has.

I was finally able to be honest with him. I remember yelling at him one Sunday morning, "You said your goodness and mercy will follow me all the days of my life. But this doesn't feel like goodness and mercy. You're going to need to explain that one to me because I don't get it." I told him that I couldn't do the work of turning my heart back to him, that he would need to do it (based on a passage from Lamentations). Then going to our women's conference at church and feeling The Lord sweetly say to me, "I'm turning your heart, I'm doing that work." I went to see a counselor at our church (if you've ever considered talking to someone like that, I would love to put you into contact with the woman I met, I can't say enough good things about her and our meeting) and at that point realizing that I was in a more balanced and theologically sound place than I've ever been before. At that time I was nervous about saying yes to the question Jesus was asking, "Is my grace enough for you?" because I felt like the question needed a forever answer. Then I realized that I needed to say yes every day, just as I take up my cross every day to follow him and that realization took some of the pressure off so that I could say yes.

A few weeks later I had a prayer session with the counselor from church. It was such a special time with The Lord.  I asked him about some of my fear and he said, "I am with you. I will never leave you or forsake you. My goodness and mercy will follow you all the days of your life." I told him I was confused about what his goodness and mercy meant and he said, "I am your goodness and mercy." Can I just tell you how sweet that was? I have been wrestling with that verse for so long, trying to apply human logic and I've really been confused since we had our miscarriages. And then, in the space of about 90 minutes of prayer he answered my question so perfectly. "Ooooohh,"my heart said, "it all makes sense." HE is my goodness and mercy and he will follow me--he has been following me-- all the days of my life, even as I've walked through the valley in the shadow of death.

So now I feel as though my break from the church has accomplished the goal it was meant to, my relationship with The Lord is largely healed. And it's time to return. The break was never meant to be permanent, it was only meant to give my heart time and space to heal.

And I'm nervous. I'm nervous about the awkward questions and attention that may arise when people who have noticed my absence now notice my presence. Sharing these personal feelings on an online blog is one thing but attempting to condense all of this into a polite 30 second response in the church foyer is something entirely different. Some of the people who will ask me are people who have been reading this blog and keeping up with my journey, people who ask me how my break is going when they see me because we are close. Others are probably not reading along and have not been as personally part of my journey. I'm not sure if they understand the reason I needed to take a break to begin with. I haven't decided yet how to respond.

There's another reason I'm nervous; maybe unsure would be a better word than "nervous." I know that many of the things that I heard from the pulpit and the music leaders in 2013 will continue to be a part of services in 2014. The reality is that most churches in the United States struggle to find a biblically sound theology of suffering because there's simply no way to make it true AND comfortable. So I'm left with a question: how do I respond? Do I hold my tongue, frustrated and lonely? Or do I speak up, likely becoming a nuisance and bother? How do I speak up in a way that invites conversation, honest and unflinching, when my heart is still so tender and scarred?

As I'm writing I realize that both places of fear are hypothetical responses to hypothetical situations which are largely out of my control. For now all I can do is pray. If or when these situation arise my best response will still be prayer, for wisdom, grace, and love.

His Grace

When I was young, my family didn't have a whole lot. You might say that we were poor. Dad was employed full-time and Mom stayed at home and homeschooled four young children who were very close in age. They sacrificed, scrimped, and scraped by to make it work. 

Mom sewed our matching Easter outfits, we made homemade Halloween costumes, we almost never ate out. I remember being in fourth grade or thereabout and when I saw a Pepsi in my friend's fridge I asked her what it was "for". She was confused by my question because the Pepsi was there to be consumed but my mind had such a hard time grasping what soda was doing in the fridge if they weren't having an event or friends over or some kind of special occasion to justify the treat of soda in the house. 

When my parents made the decision to enroll us in public school so that Mom could go back to school, we all got new backpacks (I think from Sam's Club). We each got the same style in a different color. Mine was purple. They had drawstring tops with faux leather flaps that clipped down over the drawstring. I used that backpack every year from fifth grade until the middle of high school. Every year I begged my parents for a new backpack, I wanted a Jansport like my friends. But every year my parents asked me, "Do you NEED a new backpack?" and I could never say, "yes." My backpack worked just fine, I WANTED a new backpack. So one year I set aside a portion of my back-to-school-clothing-and-supplies-money to buy a new backpack for myself. Ten years later and I still use the backpack I bought that year.

During Bible studies sometimes we come across verses that talk about how "God will meet all your needs according to his glorious riches in Christ Jesus," (Phil. 4:19) and each time my mind pipes up with a reminder about the differences between "wants" and "needs." And I think to myself, "This is no promise for cable, smart phones, new designer clothing, and the best food, this is a promise for needs." And for me needs have always been a short list: clothing for work, food, shelter, transportation, etc. Basic survival needs.

But here's the flaw in that line of thinking: we all die. All of us. Even the people that Jesus raised from the dead, they died again. So verses that promise that God will meet all of our "needs" can't be saying that He will always meet all of our individual survival needs. It just doesn't add up. I've come up with two possible explanations for how these verses can be explained in ways that I think more closely represent the whole of Scripture (bear in mind that I'm not in Seminary and I have no formal training, these are just some thoughts that ring true with me and some other people whom I would describe as being very wise and in-step with the Spirit).

The first explanation is that many passages which talk about how God will meet all "your needs" are passages in which the author is addressing a community of believers, not an individual. As a community, we are comforted in the midst of the grief we experience when a member of one of our families dies. As a community, the presence of The Lord transforms us in the midst of suffering and death. And a remnant will persevere. There will always be at least a small group of believers who are spared in the midst of a catastrophe. So in a sense, if these passages are speaking to a community of believers, then the "needs" which God supplies might in fact be related to physical survival... of the community in the form of a small remnant. Members of the community may die, but there will be members left to carry on the work of the Gospel.

The second explanation is meant for the individual. The Lord spoke to Paul and he recorded it in 2 Corinthians 12:9, "But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.'" My list of "needs" is already pretty short--food, clothes, shelter-- but maybe it needs to be even shorter--His grace. If His grace is the sum of my needs then I can trust him in the midst of the worst trials and suffering I've ever experienced. I can take the posture of accepting whatever He chooses to give me instead of clutching onto the things that mean the most to me --especially my husband and my kids. 

There are so many different ways that The Lord can speak to us. It's usually not an audible voice. A few months ago I went to a Women's Conference at my church and one of the songs we sang had a line that repeated, "Your Grace is Enough," (it might have been the Chris Tomlin song but I don't remember exactly) and I couldn't sing it. I try to think about the lyrics of songs when I'm singing them, especially in church, and if I can't sing the lyrics honestly, I refrain (haha, no pun intended). I most commonly remain silent during songs that are about healing and especially if the worship leader has set the song up to be one about physical healing--for reasons that can mostly be explained by this post. But during that song, in the midst of this conference, I felt The Lord prodding me and in my heart the question burned, "Is His grace enough for me? Will I be satisfied with His grace alone? Even if every member of my family dies. Even if I fail as a mother. Even if we have another miscarriage. Even if. Even if. Even if. Is His grace enough?"

You guys, I started writing this post three weeks ago. Nathan had taken the boys to church but he had to come home without even unloading the kids because James was having such a hard time and he knew that it'd only get worse for James in Sunday School. Nathan and I had a fight that morning (which we resolved that afternoon). The next day Liam was unexpectedly diagnosed with autism and we began to question whether trying for a third baby again would be unwise. The following day was our due date for the second miscarriage we had last year. And since then I have felt so weighed down. I have felt incompetent, incapable and unworthy. I am a hot mess, I can't keep up with house-cleaning, bill-paying or budgeting. I am constantly second-guessing myself and I am desperate to make all the right decisions. I am terrified to say yes to Jesus, that His grace is enough. Because to say "yes" is to give up control. And I know that even though this is the scariest question I've ever wrestled with, saying yes is the only way to be free from fear. It is the only way to know that I won't be crushed under the weight of loss. 

Jesus said, "Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." (Matt. 11:28-20) A few chapters later he says it a different way, "If anyone would come after me, he must deny himself and take up his cross and follow me." (Matt. 16:24) I think it might be the same message to two different groups of people who needed to hear it differently--the first to those who know they don't have it together and are hurting and the second to those who think they have everything sorted on on their own (younger brother vs. older brother from the Prodigal Son story). Either way, we have to say, "Yes, I will stop clutching my illusion of control (setting down my burdens/denying myself) and I will trust Him and obey Him because His grace is enough for me (taking on His yoke/taking up the cross).

I feel like I am right on the cusp of saying "yes". Of course I've said yes in the past, but since then my faith has become a house of cards, dependent on the Eleventh Hour Miracle. The suffering of this past year has blown my house-of-cards-faith over and I'm re-building the foundation. In Luke 9:23 Jesus words are recorded as, "Take up his cross daily," which gives me hope. I'm supposed to say yes every day, but I've already told you that I'm a hot mess. Sometimes I don't wake up with a smile on my face ready to release control of the things that matter most to me in the world. Maybe for a little while I'll say yes two out of every seven days and more and more the muscles of release will loosen up, they'll stretch and strengthen until I can say yes 29 out of every 30 days. 

Maybe the more I say yes, the more I can keep saying yes. Every day, His grace is enough.
Today I will say, yes. His grace IS enough.

Autism Awareness 2014

OUR JOURNEY

Last year at this time one of my Facebook friends was campaigning for her friends to Light it up Blue for her son who had recently been diagnosed with Autism. We were at the top of the ski slope that has been our autism journey. James had received his referral from the pediatrician to be evaluated by the schools but we wouldn't find out that he is on the autism spectrum until the end of October, about six months later.

By the time we were given James' diagnosis we were fully prepared for it. Or at least as prepared as you can be. I was expecting it.

Throughout this past year we have also been addressing a relatively severe speech delay in our younger son, Liam. The organization providing his evaluation and services prefers to start with a few months of intervention before conducting the standardized autism diagnostic test. I have been concerned that Liam might also be displaying some characteristics that are consistent with autism but -- whether to avoid providing a diagnosis that they weren't qualified to make or because they didn't actually see it -- the therapists that he sees have not expressed concerns regarding him being on the spectrum.

Recently we made the decision to start seeing a Developmental Pediatrician, a specialist that we see in addition to our normal pediatrician, who can diagnose developmental delays, help us know how to advocate for our kids in the school system, prescribe medications if the kids wind up needing them for ADHD or insomnia in the future, and this doctor would help provide some continuity for the kids when it come to therapies and delays that need long-term monitoring.

James had his appointment at the beginning of March. We confirmed Autism and something that is basically a pre-cursor to ADHD. Later in the month Liam had his appointment. The doctor diagnosed Liam as being on the spectrum as well.

Honestly we were a little caught off guard. I suspected that she'd find something, but there are so many things he does that are not typical of ASD (Autism Spectrum Disorder) that I really thought there would be some other thing that I'd never heard of. Or that he'd be just outside the spectrum. She basically said that there are things he does that are very "spectrum-y" and other things he does that are very "not spectrum-y" and that we might look back in five years and wonder why we had given him that diagnosis. But right now the diagnosis fits and it should help us get the help and resources that we need to keep him on the right track.

RESPONSES:

And here's the thing. When people hear "Autism" they tend to forget that autism is a spectrum and that kids can fall all across the spectrum. So we often get one of two responses.

The first: "I'm so sorry!" and offers of prayers for healing. And our lives have changed. This is hard. But my kids don't have a disease. If you are a praying person, I beg for prayers that I would have patience and creativity. That there would be peace. And sleep. And good food. That we would have wisdom and discernment as we make choices about therapies and schools. That we would be wise as we navigate IEP meetings and advocating for our kids. My kids just see and hear and feel the world differently than I do and sometimes it's hard for me to know which words to use and which battles to fight. When to discipline and which methods will work. What do they understand (even if James can recite the rules, does he really understand them; and just because Liam can't speak isn't it possible that he understands more than he can say)? When should the day be child-directed and when should it be parent-directed (if my kids always got to chose we'd probably watch tv all day). I honestly don't feel like there's anything "wrong" with my kids, they're just "different" and its up to me and Nathan to figure out how to relate to them so that they can navigate life. Sometimes that's hard.

The second response we get: "But they seem normal". I think when most people say this the sub-text is likely, "help me understand." But I have my own baggage. And while on this journey I've had people tell me (not in so many words) that when I was seeking an evaluation for James that I was trying to avoid taking responsibility for parenting him. This is pretty common for parents of autistic and sensory processing disorder kids. So please do us a favor and say what you mean. If that's, "I don't know very much about autism, can you help me see what you see?" or "I'm not sure what the warning signs of autism are. I can't discern a difference between your child and my child, could my child have autism, too?" Not that I would be diagnosing anyone, but that could be a starting point for a conversation about what it's like to parent kids who are on the spectrum. That way I know that you at least have a foundation for beginning to understand why I turn down invitations to just about anything if its during a time that Nathan is working or traveling (I'll tell you now--my kids don't understand normal safety precautions, they'll grab a knife off the counter to play with or spray themselves with roach spray if they can reach it or put batteries in their mouths; when I'm at home I have a general sense of when I can relax and what I need to worry about but when we're out of our house I'm on high-alert all the time and even then, depending on the setting, I just can't handle it without help from another adult). But if what's really in your heart when you say that they seem so normal is "you're deluding yourself and your kids are manipulating you," then please just don't say anything at all. Instead, observe our kids and how we interact with them. Talk to them and play with them. Take on a learning posture (green line on the Entry Posture Diagram for all you STIMers out there!).

AUTISM AWARENESS

Sometimes I think a movement that promotes "Autism Awareness" can do more harm than good. I wouldn't say that autism is something that needs to be "eradicated" not the way something like Tuberculosis or Polio or even Miscarriage and Still birth do. An "awareness" movement doesn't always promote understanding; it often promotes fear. There's a large group of people who have autism or asperger's who are trying to be adults and they're trying to make friends and get jobs. This kind of "awareness" often isolates adults and makes them feel broken.

On the other hand, I think that parents should be aware of the warning signs of autism. We should be aware that our children or our family members may be affected. And we should be aware that not everyone who is diagnosed with "autism" will look or act the same way. Early intervention is important. Ongoing research is required. But instead of "curing" these kids, I think we need to learn the language they're speaking. I've been thinking lately that my approach to my kids might be similar to the approach other parents who have adopted young kids from other countries take. So many times there is a reason or a trigger for their meltdowns and I have to come put myself in their shoes to figure it out. I have to find new ways of saying things so that they'll understand. I feel like we don't speak the same language and every day I'm faced with a decision: do I railroad them and force them to obey because I'm bigger and stronger or will I attempt to speak their language and learn from them so that we can work from trust and understanding?

Ultimately, their brains are physiologically different than ours. But their value as human beings is no less.

WAYS TO HELP

Most of the time I'm not sure how to ask for help. But here are two practical ways that you can start, 1) Wear blue on April 2 in support of James and Liam and the journey that our family is on, take a picture and tag Nathan or myself when you post it on Facebook or Instagram and give it the hashtag, #TheStoryofJamesandLiam, 2) Ask me about them. If there are things that they do you don't understand, ask me. I'm passionate about helping people understand them because they are pretty great kids and very misunderstood.
If you really want to go the extra mile in support of our family, you might consider supporting Nathan financially as he works in Campus Ministry with InterVarsity Christian Fellowship and he raises all of his salary and operating budget. We're working toward getting him fully-funded so that we're closer to being financially free for me to stay at home. Go to this website for more information on how to do that: http://www.intervarsity.org/donate/to/nathan_white

Thanks y'all, we couldn't do this without you!

Days of Amazing Grace: Lent

We didn't observe Lent in the church that I grew up in. In fact, I remember being in a meeting in Wright Place on ECU's campus with my InterVarsity Staff leader and (I'm a little embarrassed to admit this) commenting that someone had a smudge on their forehead on Ash Wednesday... I was very unfamiliar with traditions surrounding Lent and Easter. All I knew was that my church, in the Christian and Missionary Alliance, did a sunrise service every year on Easter Sunday.

I think once in college I gave up sodas or something for Lent but I really had no concept of why I was giving something up or what was the point of the tradition. To be honest with you I'm still largely unfamiliar with church traditions and the history of Lent. Last year our family observed the Daniel Fast during the last three weeks of Lent, on invitation from our church. The leadership of the church invited the whole church family to participate in the fast and petition The Lord for an answer, breakthrough, or miracle. I personally entered the fast wanting to submit to The Lord my need to justify myself to others. I often seek to justify my actions, motives, and abilities to others and my hope during the fast, was that I would be able to submit to The Lord and allow him to justify me.

My hopes and expectations for the fast would not come to fruition. I got pregnant the day before the fast started and miscarried our baby four days before the fast was meant to be broken. In the last year I have come face to face with the emptiness of my faith and how dependent I was on the miracle at the eleventh hour to prove that the God I serve is good, powerful, and loves me.

I recently read a book, One Thousand Gifts, it was a gift from a close friend who knew that I was unlikely to purchase the book myself but, having read the book, she also knew how helpful it would be for me to read. On the third page of text she says,

Really, when you bury a child--or when you just simply get up every day and live life raw-- you murmur the question soundlessly. No one hears. Can there be a good God? A God who graces with good gifts when a crib lies empty through long nights, and bugs burrow through coffins? Where is God, really? How can he be good when babies die, and marriages implode, and dreams blow away, dust in the wind? . . . Where hides this joy of The Lord, this God who fills the earth with good things, and how do I fully live when life is full of hurt? How do I wake up to joy and grace and beauty and all that is the fullest life when I must stay numb to losses and crushed dreams and all that empties me out?

Ann Voskamp, the author, was asking all of the questions that have been burning in my heart. The rest of the book details her journey of joy. Her friend challenged her to record one thousand gifts, one thousand gifts from The Lord. This book of gratitude has been so restorative for me.

You see in the midst of the deepest, sharpest pain that I've ever experienced, I'm the kind of person who cannot believe that there is a "why?" behind it all. I refuse to believe that there was some good that came out of this pain that made the loss of two babies worth it. I believe that bad things happen to good people. Eventually, bad things happen to just about all people. I know that The Lord is so great a redeemer that he can take even the worst thing I've ever experienced and transform it into something beautiful but I'm unwilling to believe that he would cause that pain for the sake of that good. For the past year, I've felt stuck in that place, unwilling to acknowledge any good that might have come from my pain for fear that others would look, triumphant, exclaiming, "well look at that, there's your answer, Michal, that's why you lost two babies in miscarriage." And if someone actually said something to that effect, it would be very difficult for me to respond kindly.

But Voskamp makes a point. "Who deserves any grace? . . . Why doesn't anyone ask that question? Why are we allowed two [grace days]? Why lavished with three? A whole string of grace days?" And so, my perspective has changed. Now I can say that I am thankful for the marks that Samuel and Cora left on my heart. I am thankful for the time I had with each of them, for the blob-like ultrasound picture I have of Cora that only means anything to Nathan and me. I'm thankful that The Lord allowed my house-of-cards faith to be knocked over so that it could be re-built on a truer foundation. I'm thankful that he has been at work in my heart even as I have remained in pain and bitterness and anger. I'm thankful that he has been patient with me in the midst of my stubbornness.

Lent begins tomorrow and my family will be entering into a time of pain and memory. It has been one year since we lost Samuel and March 18th would've been Cora's due date. There's no way that we'll be able to escape the reminders of the past year. So I felt like this year required a less traditional approach to Lent for me; as our church begins to talk about Lent and Easter, I will choose to engage in a different way. Instead of giving something up for forty days, I'm planning to give thanks for forty days. Each day I'm going to deliberately look for 10-15 gifts and record them in my journal. They can be small and repeatable, like Liam's giggles or sweet-fort-making-moments with James. The point is that I'm looking to the gift-giver and thanking him, everyday for the blessings he gives because they are so many. One day of grace is a blessing. Two? Amazing.