fetal alcohol spectrum disorder

Life in the Tension

Sometimes I like to imagine what my kids will remember me teaching them throughout their childhood. What will stick? Will they remember all the "I love you's?" Will the "you're so brave's" and "tell me about your day's" be the words that become fastened to their memory? Or will something else overshadow the sweet and encouraging sentiments? One thing I frequently tell them that they find less favorable (but I am certain they will remember me saying) is "that is not a real problem." Let's run this down so we are all clear on what a real problem is in our house.

Scenario 1: You are four years old and you have no food to eat. At all. Ever.

Correct, that's a real problem. 

Scenario 2: You are four years old and you do not like "beet taste." 

Not even close to a real problem. (Also, beets are delicious.)  

Scenario 3: You must spend a half a day walking to a source of (questionably) drinkable water. 

Yes, this. This is a real problem. 

Scenario 4: Your food touches.  

No. Having your hot, nutritious food touch other bits of hot, nutritious food? That is - comically - not a real problem. 

You can see how they might remember me saying this. Because it is said frequently. And trust me, we are a big 'feelings' house. We talk about our feelings, we validate each others feelings, we use lots of expressive feeling words. There is no shutting down how they might feel about beets. This is a safe space to feel strong dislike for "beet taste." While I strive to always hear and even affirm their feelings, I don't pretend for a second that this is a real problem. 

I was discussing this with my friend Megan the other day. (Some of you might remember her from previous #AdamsActs posts about the heartbreaking loss of one of their sweet little twin girls, Zoey.) Megan and I were discussing our very low threshold for problems-that-aren't-really-problems. I think that low threshold is directly correlated with experiencing great and tragic loss. It changes you. It changes your perspective on what suffering is. It changes your capacity to tolerate complaints about that which is not a real problem. 

When facing challenges of various kinds, the leaders at our church will often use this phrase, "This is a tension to manage, not a problem to solve." Ugh... I love this, and oh how I wish that this concept would go ahead and just embed itself in my memory already! There are some challenges in my life that I have viewed as problems I desperately need to solve. Or avoid. Or feel sorry for myself about. These "problems" are not really problems to solve, they are simple tensions to manage. 

Instead of graciously managing the tensions, I have tried to control the tensions. I have tried solving the tensions. I have attempted to escape or avoid or blame the tensions. Shoot, I'd punch the tensions in the face if I could. Yet, nothing changes... the tension remains.

I recently shifted my definition of a problem to something more like this: a problem is only a problem if there is an actionable step one can take to work toward a solution. If no actionable step can be taken, there can be a lot of tension. That tension needs to be managed in a healthy way.

Parenting a child with a pretty severe behavioral disorder can feel a heck of a lot like a life-consuming problem. Except for one thing... there is no actionable step that I can possibly take to work toward a solution.

I must live in the tension. 

I can pray in the tension. I can cry in the tension. I can seek wise counsel in the tension. I can adjust my attitude about the tension. But I cannot solve it. I must accept it. 

The focus then is not on how to "solve" my son's disorder, but on how I can remain emotionally, physically and spiritually healthy enough to manage the tension that surfaces in light of my son's disorder.   

You may be wondering, "Who cares? What's the difference?" But the difference is everything. It's the difference between overwhelming shame that I cannot heal my child, and accepting him where he's at in his process. It's the difference between feeling exhausted and infuriated by the sheer volume of time spent supervising every little move, and recognizing our family's need for respite in order to prevent that fury and exhaustion. 

The difference is the understanding that I cannot play the Holy Spirit in my child's life. In the tension, I can only manage my own reactions, my own health, my relationships. But in the tension, I can know that I did not cause my child to have Reactive Attachment Disorder any more than I can cause my child's aversion to the glorious taste of a perfectly roasted sugarbeet. 

I did not cause either of these phenomena, and I cannot "cure" them either. I can only manage myself in the tension. 

It's hard to suffer well. And the greatest suffering occurs when there is no actionable step to take, because we cannot solve our way out of our pain. We cannot bring back the child that died. Or the parent who left. We cannot heal the primal wound that is left within the child who is separated from his first mother. 

We must simply learn to live, and accept, and love, in the tension.

So, when my five little ones are all grown and they reflect back upon their childhood, I hope that what they remember most is all the expressions of love, encouragement and adoration. Yet, I don't mind if they also remember me clarifying the difference between a real problem - real suffering - and something that is simply a tension to manage. Not only do I hope they remember hearing me speak these truths into their life, but I hope they remember me living, and loving, in the tensions... and teaching them to someday do the same. 

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Jay, age four, confronting his greatest fear, a beet.  

The Time I Went B-A-N-A-N-A-S

Yesterday was a bad day. A really, really bad day. I basically failed at life yesterday.

My sister-in-law, Carlie, recently sent me a song that has become my anthem. I have this song on repeat for much of the day, and I'm telling you that if you watch this video, and watch it all the way to the end, you're gonna straight up pray that sinner's prayer. Okay, maybe you won't, but that is the impact that Miss Tasha Cobbs has on me when she's singing this song. This song, it is my anthem.

Plus, my voice sounds a lot like hers.

I can not overstate how this has become my battle cry. "I am empty before you, fill me up God." 

I don't know how it is possible to feel so empty, and also so full of my own self. I am empty, and yet, I am stuffed. I am stuffed with selfishness, with fear, with stress, with rage, with pride, with self-loathing, with a desire for control, and more than anything else, I am stuffed with a desire for relief. I am stuffed sick of my self, and at the very same time I feel completely empty. So, I listen to this song on repeat and I let Ol' Tasha usher Jesus into my empty places, and I let him sweetly pour me out, all of that junk that is in me, I beg him to let it spill out so that He alone can fill me up. 

I know that this sounds ridiculous if you have never encountered Jesus as a living leader and active forgiver. But, for me... this song is like being in a spiritual spin class. Where the instructor is leading me into an excercise that I lack the motivation and discipline and know-how to do on my own. Listening to this song has been a spiritual excercise, and the incredible voice on that woman is walking me through the process of opening up inside, and letting a holy fire burn out whatever is left in me, so that I can be an empty vessel that God, in his mercy, can fill to overflowing.

Yesterday was a bad day. Yesterday, I was empty. And I am realizing now that "empty" just means that I am actually full - of all the wrong things. So, yesterday I was stuffed. And I lost it. I absolutely lost my mind. I have a new respect for the phrase " go bananas" because I truly and completely went bananas. Ironically, about 14 bananas were actually involved in this particular incident. I won't go into the whole mess of the thing, but let's just say that lives were saved by the fact that bananas are a soft fruit. If we were talking pineapples, I'd be in jail right now.

It wasn't pretty y'all. My entire dining room was a battle scene, the evidence of our struggle was everywhere. The floor, the table, most of the chairs, the walls, all of it, was caked with smashed banana, and my heart was caked with shame. And while I was on my knees, face down, sobbing in the literal and figurative mess of my life, I heard Tasha Cobbs still playing on my phone. It was at 3:56 into the video and in the song she is begging God to fill her up. 

Fill me up, God

Fill me up, God

Fill me up, God

Thirty times in that section of the song, the phrase, my anthem, is repeated.  

"Somebody ask him," she sings, "I need a fresh annointing... Somebody ask him, fill me again. I need more of you. I've been running on empty. I need you to fill me again. We cry out for more. More of your spirit is what we need. More of your annointing, more of your glory, fill me up. That's what I really want, that's what I really need. I'm so tired of me, I need more of you. I gotta have more of you. "

A couple weeks ago, I was the key-note speaker for a weekend retreat. Next week I go to Michigan for two speaking events, and when I get back home, I have even more events lined up, or maybe not after I publish this post. Either way, I am not selling out arenas or anything, none of these events are necessaily huge or impressive. But, I stand before people and I tell them about my life, I tell them about the wisdom in the Bible, the truths of scripture, but ultimately... I only ever say one thing, that Jesus is the bringer of hope and redemption. That is my only message.

Sure, I write and speak about my life. I talk about parenting a child with Reactive Attachment Disorder. I talk about being a multi-racial, adoptive family. I talk about racism. I talk about the violent end to my brother's life, and my response to his death (#AdamsActs) with you all. I share my family's personal experiences - my daughter's current health struggles, my mistakes and my struggles, about throwing down with bananas, cross-country road trips, general shenanigans, and all the in-between stuff. But, all of that sharing is just a pouring out. It's just an attempt to overflow what God is doing, has ALWAYS done, in my life.

I have nothing to say, I have nothing to write, that isn't about redemption.

People often tell me that I should write a book. There are even times where it feels like it could actually be a dream realized. But the question remains - what would my book be about? 

The answer is redemption. The answer can only ever be redemption.

Because I am empty, and yet I am stuffed. And I am the worst. And I lost my head and I went crazy and I let myself lose sight of who God made me to be. And so much banana was involved. And still, somehow, God still lets me speak to rooms full of people. God still lets me tell you my story. He lets me tell you his story.

Please don't tell me how amazing I am in response to this. Please. If there is ANY good thing in me, anything at all that is inspiring, or encouraging, or worthy of admiring in me then you must know, that is not me at all. I am on the floor covered in fruit. I am dry, and empty, and still sickly full of my self, my shame and my sin. But, still, he uses me. I am not amazing, I am broken and he redeems me for his purpose. And that is the miraculous power of the living God that I serve and rely on. Because if, even for a second, I take my eyes and my hope off of Him... I instantly become part of the broken mess. 

And every time I go to write, or speak to other people there is nothing I am more aware of than my own lack. My shortcomings, my limitations, my total and complete depravity are never far from my mind. The day I lose the awareness of my own need for redemption is the day I have no business writing or speaking to anyone again.

Yesterday was a bad day. A really, really bad day. All of us can relate to that. Anyone parenting a difficult child, or does life with somone who has mental health issues, may be able to relate to some degree. Those of you parenting a child with disordered attachment... you have a banana battle story of your own, I'm certain. And as I kneeled down, filthy and sobbing and ashamed, I begged God - out loud and in front of my empty, hurting child - to fill me up.

"Fill me up God, Fill me up God, Fill me up God"

I do not deserve to write or speak to so many people. I am not worthy to speak a single word about a Bible that I can so easily disregard in a moment of anger or exhaustion or emptiness. But,

That. Is. Redemption.

That in the unlikliest places, that at the unlikliest times, in the unlikliest people, God chooses to fill, to forgive, to heal and to sort it out for good. And as long as he continues to redeem me and fill me and give me another go, I will simply never shut up about it.

 

 

To All the Other Haggard Moms Parenting a RAD Child

There is nothing so painful as unrequited love. And there is no love as powerful as a parent's love for their child. So when you love your child and he does not, can not, love you back... it might be the most heartbreaking scenario of them all. 

At least that is how I am feeling now... that (apart from losing a child) there is no pain I can fathom like having a living child that you cannot reach. 

Unrequited attachment, unabsorbed love.

And the world takes the salt of misunderstanding and rubs it into the proverbial wound. All kids lie, they say. Or steal, or hurt others, or themselves.

All kids want control. All kids say hurtful things.

All kids... 

He is not all kids. He is my kid. And I know him best. I know what makes him sicker. I know that treating him like "all kids" is one of those things.

I am exhausted. I am fed up. I am done explaining to people that yes, a child can be traumatized inside a womb. Google it. I am tired of trying to convince people that an unborn baby who develops in a bath of cortisol (stress hormones) instead of bonding chemicals will not respond to life or love in the same way as a typically developed child. I am all done explaining how exposure to different substances may harm a child's ability to bond and connect. I will not keep explaining that my child is both brilliant and unable to choose wisely. I will not keep asking for support only to be questioned or accused or dismissed. I am done.

Except that I'm not. I'm never done. As much as I freakin want to be done... I am not even close.

We are on four different waiting lists for various supports and schools and services. We have four siblings who are confused and wounded and are trapped between knowing that they must forgive, and their natural instinct to protect themselves from a person that causes them pain. 

I cannot describe the sight of a small, furious, hurting sister shaking her fists with the totality of her exasperation. The helplessness in her eyes, matched by my own.

 And all I can say is "I know baby. Me too." 

I cannot take away my son's pain. I can not make him feel unabandoned. I am not enough to fill in neurological gaps or heal his amygdala. My love is not that big. My love is not enough. YOUR love is not enough... so don't try to be his friend, or tell me to love him where he is at. I do. It's all I have done. And it isn't working. And I will keep doing it because there is nothing else to be done. But, all I can do is still not enough. 

I read the Bible so I know that God IS enough. I know that. But, right now... it's looking a lot more like

God + an unreasonable amount of time + so much pain in the interim = enough

I know that I sound hopeless. I know that all this is raw and scattered and probably sounds dramatic. But of one thing I am sure, there is at least one set of eyes on the other side of this screen that are filled with dysfunctionally relieved tears. One set of eyes that are seeing their feelings put into words, maybe for the first time.

So, I am writing to her. To the isolated, discouraged, helpless mom who's love is unrequited:

Hey. What's up? Thanks for somehow finding my blog. (Probably at 3am.) What you are going through is really, really hard. For you, and even harder for your child. You probably chose adoption because you wanted to be the family that helps to complete a child and now you are realizing that - surprise! - your family is being torn apart instead. Listen. Here are some things I need to hear on a regular basis and sometimes I have to say them to myself. 

1- You are not alone. There are a crap ton of us out here going through this, but most of us are too ashamed of ourselves, or too protective of our kids, to talk about it. There are a lot of anonymous blogs, but be careful, people are angry and exhausted and they sometimes bash their children. That's not okay, and it's not helpful for you.

2- You didn't cause this. (Unless you are an abusive dirtbag and you did cause this.) You didn't cause this.

3- Nobody, literally nobody, will understand what you are going through unless they are also a parent of a RAD kid. Social workers, psychologists, attachment therapists, adoption specialists, respite providers, felllow adoptees, friends, family... they all have their place, and they may even be excellent and able to help. They will not understand. Unless they are raising a child with RAD, or have done so in the past, they simply won't get it. 

4- A lot of people won't believe you. They probably will eventually, but until then, there will be a lot of advice and suggestions and have you tried's. There will be a lot of judgement. There will be a lot of people who try to "rescue" your child by loving on him, because they can't understand that you have done that, and it wasn't enough.

5- Get a door alarm and a video monitor. You need sleep, and peace of mind, and you need both of these to have a snowball's chance at either of them.

6- It's okay to go away. You need respite. Your other children need respite. Your hurting child needs respite. You all need to breath, and it's really okay to make room for it. It's not just okay, it's necessary.

7- Find a Lexi. A Lexi is a faithful friend, a champion for your self-care, a devoted caregiver, and defender of the weak and a giver of good gifts... like breaks from your child and cups of hot coffee. She doesn't have to be named Lexi, but mine is, and I couldn't do this without her. 

8- He can't love you. It's not that he won't, it's that he can't. He might want to love you, or he might actually love you, in his way, but he can't show it. He can't stop protecting himself from your love. Your love is scary to him, but it's also all you've got. And when you run out, it's okay to fake it. 

9- This is probably going to be the hardest thing you will ever do, and the biggest fight you will ever fight. You will probably not see results for a really long time. You might not ever see results. You must keep going. You signed up for this, even if you didn't know it at the time, and it is your job to keep going. And it's going to break your heart over and over and over. 

10- I know baby, me too. 

An Honest Conversation

This week I misspelled the word "fundraiser" in a text message and autocorrect changed it to "fun drainer."

Yes, I thought.

That.

Exactly that.

Nothing drains the fun  and the sense of being a grown up  quite like fundraising.  

Here is how it all went down...Our talented and amazing friends, Brandi and Danny Ebersole took Tom and I out to a restaurant over Christmas break and said  nothing close to this, but this is all I heard  basically this, word for word, "Why don't we video tape you ugly crying while you spill your deepest family guts and we will put it on the world wide web for all to see!?"

It took a platter of really disgusting steamed buns and an obscene serving of bread pudding to stuff all my feelings about this proposal. If anyone else on planet earth had asked to make a video of us sharing such a deeply personal experience, I would have punched them in the throat. But, it wasn't just anyone. It was Brandi. Brandi! If anyone could be trusted to delicately handle our baggage with care, it would be her and her sensitive and gifted photographer/documentary making husband, Danny. As fellow adoptive parents, I knew they would know and convey our heart for Harper. And as an adoptee, I knew Brandi would understand the possible implications for Harper, if this were not handled with the utmost care. So, we hesitantly accepted this challenge to initiate a conversation about children with attachment disorders and other special needs that affect a child's ability to make healthy attachments. We all understood that these conversations are frequently silenced because of shame and fear. We knew that our own shame and fear would surface, and would threaten to keep us silent as well.

In fact, there were several occasions where I panic-begged Brandi and Danny to abandon ship, and destroy all footage. But, they believed in our family, and they believed in the power of telling your truth, and they believed in all of you. They believe that you would want to know our story and be a part of a creating a bigger story for our family, one of healing. So, we went forward in good faith that God would use our family's story to bring awareness and hope to someone who needed it, as well as resources and support for our family to be healed. As hard as the public ugly crying was, the fundraiser element is even harder for Tom and me.

It makes me feel like a little girl sitting at a lemonade stand waiting for customers. As an adult, I know that nobody really wants to waste even a dime on the watered down lemonade (that was undoubtedly prepared without any concern for what is sanitary) but we buy it anyways and we dump it out our car windows as soon as we turn the corner. Why do we do this? Because we want to support the little entrepreneur's willingness to be vulnerable and to put themselves out there. I feel like that little girl right now, but with the adult awareness that nobody really wants to waste a single dime on my  problems  lemonade. I feel like that little girl sitting there, with all her ugly hurts and failures exposed before the world, saying do you like my lemonade? 

It is terrifying, and it feels pathetic and humiliating and I keep returning to those moments of panic-begging Brandi and Danny to pretend we never agreed to this project, just to be spared from such feelings of raw transparency. But Brandi's ever-encouraging voice keeps reminding me of a few truths... 

Yes, we have a long and expensive road ahead of us... and yes, we could really use a community of people who are willing to generously walk that road and carry the financial burden along with us. Still her voice gets drowned out by the loud and faithful fear/shame combo that cranks itself up on a regular basis reminding me that "adults don't need money from other people because they should be able to manage on their own!" And ya know what, that is also true. We can manage. If nobody had any desire to partner with us, we would still make every possible sacrifice necessary to get Harper, and our family, the help he needs. But, there is something beautiful about the fact that many of you do desire to partner with us, and some already have.

We are overwhelmed by how many of you have taken the time to comment or share our video. We are overwhelmed by those of you who have generously given financial gifts, as well as gifts of prayer and encouragement. We are overwhelmed that anyone would be willing to pass their words, their dimes and their dollars on to us, so that we can get Harper the best care possible and be relieved of carrying the heavy financial and emotional price tag alone. It is that humbling sense of gratitude that makes me feel a little less like I'm selling refreshments, and a little more like I am the one that is being refreshed.


To view the video, or if you feel led to participate in this mission to bring healing and wholeness to a remarkable boy, our sweet friends have organized this "fun drainer" which we invite you to share with anyone who could benefit from hearing our story. 


My Child is Not Struggling Because...

Over the past few years, the following things have been offered to us as possible causes for what we are experiencing with Harper. Most of the time the suggestions have been made in love purely out of concern, and occasionally they have been "casually" dropped into a conversation in correction or judgement. Some are shoved down our throats via Facebook articles and blogs. So let's take a look at the disordered attachment cause d'jour. 

We are going through this...

- because we didn't spank him.
- because we spanked him too much.
- because he doesn't have enough structure.
- because we are too rigid with him.
- because he needs tough love.
- because we musn't love him as much as our biological kids.
- because he's the only black/adopted child. (Before Jay.)
- because Jay's adoption is open. (After Jay.)
- because it's genetic.
- because we don't have a nurturing environment.
- because we aren't consistent enough.
- because we are too firm.
- because we were too open with him about his adoption.
- because we weren't open enough with him about his adoption.
- because white couples shouldn't have black children.
- because you shouldn't "mix" adopted and biological children in the same family.
- because he needs to learn self-discipline/self-control.
- because he needs a physical outlet.
- because he doesn't get enough attention.
- because we've let him be the center of attention.
- because we don't follow through.
- because we don't show enough grace.
- because we have let him get away with things.
- because we never let him get away with anything.
- because he needs medication.
- because he needs play therapy.
- because he didn't get enough skin-to-skin contact.
- because we aren't on the same page as parents.
- because we didn't do the family bed. 
- because I didn't wear him in a sling enough.
- because I wore him too much and he got spoiled.
- because I used "separation" tools like strollers, bouncy seats, etc.
- because I didn't nurse him.
- because I did nurse him, and that's unnatural.
- because I let him cry it out.
- because I answered his cries too readily.
- because I am too uptight about what he eats and drinks.
- because I am too loosey goosey and don't have him on a specialized diet. 
- because we don't have a strong enough marriage.
- because we don't pray enough.
- because we've neglected the spiritual element of child-rearing.
- because we over-spiritualize everything.
- because we haven't trained him biblically.
- because I am too distracted.
- because he is too distracted (attention deficit).
- because we have too many kids.
- because we over-analyze.
- because we haven't analyzed enough.
- because we are making the adoption piece too big of a deal/love is enough.
- because we aren't giving the adoption piece enough weight.
- because we followed BabyWise.
- because we didn't follow BabyWise.
- because we eat healthy/he doesn't get enough treats and affection.
- because not local/paleo/organic/free-range/no red dyes/gluten-free/annato-free/preservative-free/dairy-free enough.
- because we aren't conscientious parents.
- because we are helicopter parents.
- because he wasn't taught responsibility.
- because he was given too much responsibility.
- because it's spiritual.
- because it's psychological.
- because it's emotional.
- because it's medicinal.
- because it's chemical. 
- because it's developmental.
- because it's neurological.
- because it's physiological.
- because he should spend more time outside.
- because I don't homeschool.
- because he rode the bus to school.
- because I pulled him out of school.
- because he's not in private school.
- because we aren't in a good school district.
- because our school district is too diverse/other black children are a bad example.
- because our school district isn't diverse enough.
- because we don't have enough black friends.
- because our black friends aren't playing a large enough role.
- because he needs a mentor.
- because he doesn't know enough adoptees.
- because he is too aware of his adoption story.
- because he doesn't know his whole adoption story.
- because he has a learning disability.
- because he's too smart for his own good.
- because he's bored.
- because he has anxiety.
- because we should ignore his behavior.
- because we should put him in a group home.
- because we weren't prepared for adoption.
- because we didn't know what to look for.
- because the adoption industry is crooked.
- because immunizations.
- because food allergies.
- because microwaved plastic.
- because he'll outgrow it.
- because boys will be boys.
- because hormones.
- because high-energy.
- because wheat.
- because....
- because...
- because...

Because, no. Because, shut up. Because... none of this. Or because, all of this. Because, I don't know yet... and because, neither do you. 

But what I do know this... attachment is attachment, sensory is sensory, fetal alcohol is fetal alcohol, autism is autism,  attention deficit is attention deficit. They are not all caused or treated the same way, and many cannot be prevented. Many present co-morbidly (at the same time as another) and so it is hard to distinguish between the two, or three, or four things going on at once. What might look like a parenting problem, may in fact be a neuropsychological disorder. 

There is no fast solve, and I know that is uncomfortable. There is no Facebook timeline article that can shame a mother into solving disorders or dysfunctions like these. There is not a vitamin for autism or  insecure attachment, nor a something-free/something-rich diet that repairs brain-damage caused in-utero. Being shamed into a pro- or anti-something parenting position is not going to be what heals my child.

"If one is sick and desires healing, it is of prime importance that the true cause of the sickness be discovered. This is always the first step toward recovery. If the particular cause is not recognized, and attention is directed to subordinate causes, or to supposed but not real causes, healing is out of the question." 
- David H. Kim (The Lord's Prayer Devotional)

I believe that Harper will be healed. But it will not be quickly, it will not be unexplained or mysterious, and it certainly will not be because I went wheat-free. Perhaps I am wrong, and I do believe that God can and does perform miracles, and perhaps He will choose not to perform an instant miracle healing solely because of my lack of faith here... But I really just believe that God is going to heal him over time. The miracle will be that we all still love each other on the other side of the process.