Friday, February 21, 2014

Life outside the box

Before we ever got pregnant with any of our children, I wanted to have boys. I had worked in daycare settings, caring for infants, one year old toddlers, and two year old toddlers. I observed babies who were 9 and 10 months old and knew that at that age the girls were already starting to be a little dramatic and the boys were obsessed with balls and physical play. So when we found out that James would be a him I was stoked.

I learned from discussions with my husband and observations from my childhood that since women are often the primary caregivers and teachers, boys are sometimes expected to behave like girls since women have only ever been girls. So I resolved that I would not try to force my sons to sit still and behave like girls, that they would be allowed to get dirty and explore the outside and have adventures.

I moved into parenthood with confidence, after all, I had had the chance to watch dozens of other parents navigate the infancy and toddler stages and I had observed their successes and failures and I thought I knew what kind of mother I was going to be. I knew how to set up eating and sleeping schedules, how to burp babies and change diapers, how to apply diaper cream and what creams I liked. As an infant and a toddler James was all boy. He was into everything as soon as he could crawl. I remember explaining to my friends that there are four kinds of kids, 1) You tell them "no" and they dissolve into tears; 2) You tell them "no" and they generally obey; 3) You tell them "no" and they wait until your back is turned to do it anyway; and 4) You tell them "no", they look at you and smile, then do exactly what you told them not to do. We assumed at that point that James was the fourth one. He was obsessed with the outlets, he climbed on the table, he was into the drawers in the kitchen.

When James turned three he was in preschool and started to act out in ways that were inappropriate for a classroom setting. He would throw things on the floor or become obsessive over the trains. The teacher mentioned that he didn't respond well to his name being called from across the room. I realized that I was at the end of my expertise. I had never worked with three year olds before, I had no idea what to do with him. So I started to read books, ask my friends, and talk to our pediatrician. Eventually I realized that I wasn't having a battle of the wills with James, he's not a defiant child. I began to realize that even though he's very verbal, he often doesn't understand conversation or simple instructions. It's easy for him to feel socially lost in a group of people and revert to doing his own thing. Sometimes "doing his own thing" is quiet, basically every mother's dream, he'll play with his trains quietly for 30-45 minutes. Other times "doing his own thing" means that he wants to explore the kitchen (knives), splash in the water in the bathroom, or pull the step-stool up to every elevated surface that I use to keep contraband and other age-inappropriate items out of his reach.

We found out this year that James has autism and sensory integration disorder (SID). SID can be broken down into two categories-- Low Registration/High Registration and Sensory Seeking/Sensory Avoiding. Registration is the body's ability to perceive sensory input. James is Low Registration which means that his body needs more sensory input for it to "register" in his brain. Seeking/Avoiding is the distinction between a child who craves sensory input and the child who avoids sensory input and is distressed by it. James is seeking. So basically we're working with a child who runs into people, hits them, throws things on the floor, dumps out "sensory toys" (like pasta tables) and then when you add in the autism, he can't understand why it's not ok.

Liam expresses many similarities to James and also some key differences. Liam is largely nonverbal. He has shown some good progress over the last six months in speech therapy but he still has a hard time communicating basic needs and he cannot communicate any verbal information about his emotional state (angry, sad, scared, etc). He also has SID and is Low Registration/Sensory Seeking.

Let me be clear. Whatever diagnoses or labels you put on them, they're still my boys. They are the kids that I have known and loved since the moment I got a positive pregnancy test. Their labels may change but my love for them will never change. They are both so funny, James quotes lines from movies at the best times and Liam is a goofball. They are kind and thoughtful, they look out for each other. I love that I get to be their mommy.

There are times that this life is a struggle. In many ways I struggle in all the same ways that other mommies struggle. I am frustrated when my children disobey. I feel completely out of my league, like I have no idea what I'm doing. I constantly wonder if I'm making the right decisions or doing enough for them. I worry about trusting other people to take care of them at school, at church, or at home when we have babysitters.

But I also have a different set of worries: James and Liam would not be able to tell me if something inappropriate happened at school/church/with sitter. They don't understand normal safety precautions and we have to be vigilant when we're near moving vehicles, when there are knives on the counter for food prep, when we're at someone else's house and they can reach batteries or magnets (they may eat them), when we're near swimming pools or the ocean (they have no fear of the water). Recently I realized that in our town the predominant form of socialization happens at festivals (Pirate Fest, Watermelon Festival, Collard Festival, etc) or at large gatherings in our Town Commons. We can go to those things and bring our children. But we cannot go with the kids and expect to socialize with other people. They each want to run in opposite directions and I can't trust that they won't wander away or try to jump in water or drink someone's drink or who knows what else.

Honestly, it can be rather lonely.

It's not my intention to complain, not really, I just hope you'll hear my heart. When I turn down your invitations to birthdays or going to festivals or hanging out in open spaces, know that I'm not copping out. I'm not making excuses. Those settings are a genuine struggle for me and our family and I will leave feeling like I didn't get to spend time with you. If you have breakables in your house that are in reach of a very tall four-year old, would you consider moving them up a little higher before you invite us over? Or roll with the flow if I suggest my place instead? When we talk about what our kids might "get into" keep in mind that James has the ingenuity and physical ability of a four year old with the behavioral restraint of a two year old. And Liam has the ability of an almost three year old with the restraint of a one year old. So when I go double check an area, it's not because I doubt your ability to gauge what would be safe for a typical four year old, it's just that I know my four year old is not typical.

In so many ways I'm very new to this journey. Just one year ago we were starting to get those "bad behavior" reports from preschool but we hadn't started the referral process for evaluations. But I love to help people understand the little that I've figured out about how their brains work and how they experience the world differently; I think it's fascinating and love to raise awareness and understanding. I'm passionate about working with my kids so that they can be in "normal" settings without causing unreasonable discomfort to their peers (predominantly, that they don't physically hurt anyone) and helping their caregivers understand good ways to communicate with them.

If you think you might be at the outset of this journey or if you know someone who is walking this same road and you have questions, feel free to contact me. Or if you'd just like to understand how to talk to my kids in a way that they understand, let me know. I can promise you I don't have all the answers. But like all mothers, I love to talk about my kids :) They're pretty amazing.

Tuesday, February 11, 2014

I will wait for him

1 la·ment verb \lə-ˈment\: to express sorrow, regret, or unhappiness about something

Two Sundays ago I sat in the quiet house, taking in the silence. Nathan was on nursery duty at church and would be gone for both services leaving me a large chunk of time alone. (In a previous post --The Break-- I described my need for a break from the church in order to process the pain of two miscarriages and to work my way back to the Lord.)

For the first time in months, I was looking forward to spending time in my Bible. As I sat down with a cup of coffee and my Bible, I decided to start by flipping through Psalms. I was already familiar with some Psalms that express sorrow, Psalm 13 being one of my favorites:

How long, O Lord? Will you forget me forever?
How long will you hide your face from me?
How long must I wrestle with my thoughts
and every day have sorrow in my heart?
How long will my enemy triumph over me?
Look on me and answer, O Lord my God.
Give light to my eyes, or I will sleep in death;
my enemy will say, 'I have overcome him,'
and my foes will rejoice when I fall.
But I trust in your unfailing love;
my heart rejoices in your salvation.
I will sing to the Lord,
for he has been good to me.

What I'm beginning to realize is that many --most?-- Psalms end on that note of hopeful resolve. I often get the impression that the writer is speaking to himself, reminding himself of the mercies of the Lord and making a choice to praise. Other times, the writer claims victory over his opponents and describes their downfall. A part of me wants that resolve but a part of me just isn't ready for it.

My close friend who is grieving a miscarriage told me something her husband said. To paraphrase, there are two biblical and legitimate responses to pain and grief. The first is to dwell on scriptures of hope and promise and resolve to praise the Lord in the midst of your pain. The second is to be in the depths of the pit and to know that the Lord is with you. I tend to fall into the latter category. I'm in the pit... and I'm just now beginning to feel the presence of the Lord with me.

From my observations and my friends' observations, people who are Christians tend to fall into one category or the other and we tend to have a hard time relating to people who are in the opposite category. I might say that Psalms tends to be in the former category, acknowledging the pain but claiming hope. For most people who are not grieving it is easier to enter into the grief of someone who is full of hope and praise-- they can understand it and engage with it. But it is much, much harder to come alongside of someone who is in the pit. Mostly we just need people who will be there for us. We don't need words of encouragement or victory--they just don't ring true.

Honestly, in retrospect, one thing that might have been really helpful, and might still be helpful, would be to hear people pray for me (but again, not in a "claim the victory" sort of way). To hear someone else express the Lord's heart for me and his presence with me, would have been so helpful.

Going back to my Sunday time in scripture, I wound up looking up the word "dancing" in my concordance because I wanted to find the verse that says "You turned my mourning into dancing." It's a concept I've been thinking about frequently. It's from a verse in Psalms. But another use of the word "dancing" in the Old Testament came from Lamentations chapter 5 and it says, "You turned my dancing into mourning." That caught my eye.

I spent the morning reading through Lamentations and for the first time in a long, long time, Scripture felt true to my experience. It's like "crap crap crap crap crap--a little glimmer of hope-- crap crap crap crap-- the Lord did not abandon you-- crap crap crap crap". That could be our story from last year. It's the latter category, the response to suffering that is in the pit but with the presence of the Lord.

Here are some of the passages that struck me (taken from Lamentations chapter 3):
I remember my affliction and my wandering,
the bitterness and the gall.
I well remember them,
and my soul is downcast within me.
Yet this I call to mind
and therefore I have hope:
Because of the Lord's great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.
I say to myself, 'The Lord is my portion;
therefore I will wait for him.'

For men are not cast off
by the Lord forever.
Though he brings grief, he will show compassion,
so great is his unfailing love.
For he does not willingly bring affliction
or grief to the children of men.

You have covered yourself with anger and pursued us;
you have slain without pity.
You have covered yourself with a cloud
so that that no prayer can get through.
You have made us scum and refuse
among the nations.

Streams of tears flow from my eyes
because my people are destroyed.
My eyes flow unceasingly,
without relief,
until the Lord looks down
from heaven and sees.
What I see brings grief to my soul
because of all the women of my city.

I called on your name, O Lord,
from the depths of the pit.
You heard my plea: 'Do not close your ears
to my cry for relief.;
You came near when I called you,
and you said, 'Do not fear.'

I know that was rather long, but honestly, that passage contained almost all of the hopeful language from the whole book. This is a book that captures my grief. And it also reminds me that there is cause for hope in the midst of the pain. The Lord is with me in the depths of the pit and says, "Do not fear."

This past Sunday wasn't quite so warm and fuzzy. I basically spent the time I had by myself to pray... but "pray" might be a loose definition of what I did. I talked to the Lord. Yelled at him, really. When I write down my prayers I wind up filtering them and I don't always express what's in my heart. So I expressed my heart to him. I asked the questions that have been burning inside me. I told him that I don't understand. And just before Nathan returned I looked up a verse from the end of Lamentations in the commentary we have. Lamentations 5:21 says, "Restore us to yourself, O Lord, that we may return; renew our days as of old."

The commentator explains that the writer was making a distinction here. "Their prayer is not, 'Turn thou to us,' but 'Turn us to thee,' which implies an acknowledgement that the cause of the distance was in themselves. God never leaves any till they first leave him, nor stands afar off from any longer than while they stand afar off from him; if therefore he turn them to him in a way of duty, no doubt but he will quickly return to them in a way of mercy... This implies a further acknowledgment of their own weakness and inability to turn themselves. There is in our nature a proneness to backslide from God, but no disposition to return to him till his grace works in us both to will and to do. So necessary is that grace that we may truly say, 'Turn us or we shall not be turned,' but shall wander endlessly; and so powerful and effectual is that grace that we may as truly say, 'Turn us, and we shall be turned;' for it is a day of power, almighty power, in which God's people are made a willing people." (Matthew Henry's Commentary on the Whole Bible)

To paraphrase: I can't turn my own heart back to God. But if he will turn my heart back to him, I know that he will also come close to me. And that's how I left it with him, "Lord, I need you to do this work in my heart because I can't do it." And now I'm waiting. I'm trying to walk the delicate balance, maintaining a heart that is receptive to the Lord's molding and waits on him, without falling to either side--one that says, "I'm waiting on the Lord which means I have look for ways to change my own heart," essentially taking over to do it myself and the other that says, "Well I'm waiting on the Lord so he's gonna have to come through with a big miracle or sign," closing my heart to the possibility of change.

"The Lord is my portion; therefore I will wait for him."