Not What You Expected

(Instead of my usual random essay about life in general- I am beginning a series of letters to a younger version of me. I do not claim to have all of the answers or to have landed on some really good insider knowledge- but rather hope that these will come across the screens of people who are like me- wanting to hold on to their faith when their world is upside down and sideways of what they expected- and the only thing they are sure of is that they love  God and are in need of Him and His help every day.)

Dear Younger Me-

I look back at you with the lens of hindsight and I want to tell you- God is faithful.

You who are sitting there naively taking in the first IEP meeting for your three year old who has been pronounced autistic, being told by experts that they can fix this. They are confident that with a simple addition of structured routine, they will accomplish what you can’t. You have tried so hard to teach your wiggly little boy to color instead of try to eat the crayons. You have tried so hard to coax words from his mouth, and are so keenly aware of how frustrated it makes him who can so beautifully reaches out to your heart with his eyes and his smile, but can’t shape words the way he wants to.

You who can’t help but hear accusation in their words, even when that is the farthest thing from their minds, because you feel that somehow you have failed your child- take heart.  Just as you are blameless before God because of the work of the cross, you are blameless in this. You live in a broken world, and you will learn that you are far from the only mom facing this monster word autism as time goes on. But right now you need to know that God didn’t do this to you, but that the world he was born into did this.

Right now you are numb. You are not yet feeling the sting of the word because you are so very trusting. You believe that what they are telling you is right. You are willing to sacrifice  your confidence in your ability as a mom so that you can make this whole thing make sense. I wish you hadn’t. In time you will get some of that courage back, but right now I am watching you let it seep away- trusting the words of men and women who are experts because they have gone to school and worked with other kids, but you are the expert on your son. The skepticism you are squelching to maintain your composure as they tell you that with in six months he will be just slightly behind his typical peers because they can offer structure to him will echo again in your heart when you meet with them and see them guessing just as much as you are. I wish you weren’t in awe of their education and degrees, because you nod silently and say yeses when your heart screams no-

Numbness will carry you for a little while, and for now you are not lying when people ask you if you are okay- the grief will come later and I will write again about that pain later.

Right now though, you need to know that the connection you made with God when you felt isolated and alone and bleeding heart broken while sitting in youth group when you were sixteen and seventeen will serve you. Right now you aren’t so sure maybe. Right now you aren’t sure where to go to church, but are really sure things will get better if you could go. You aren’t ready for what will come of that hope now, but I will say, keep pressing in to God.

Dear heart,  you will make it, and as I keep moving forward I too will keep making it, not because of the footprints in the sand that everyone is so agog about, but because when you fall flat on  your face running  your race, your Heavenly Father will always be there to help you stand back up and support your shattered steps as you keep moving forward in this race.  You don’t yet know how long this road will be,  but you are right to keep trusting in God. There is no other hope that will help you stand – and you are going to have to stand.

Love and courage-

Your future self.

 

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Unexpectedly Unchurched

Growing up I was always in church. Not only were we always at church, but my parents were always in the thick of whatever lay ministry was available, and eager to prove themselves to be considered as lead pastor material until they were finally given the opportunity shortly after I moved out and got married. As a devoted Christ follower I have always known the place I needed to be in was with a solid, Bible teaching and believing church come Sunday morning. My expectation was that church would always be an integral part of my family’s life. In fact, when we were expecting our first child my husband and I were worship leaders at my parent’s church. But then the world sort of shifted. The church which had never been anything close to thriving went from a fellowship of five families,  through the death of one member, and the moving away of another family, dwindled down to  three families, all of which were related to my parents, and it was no longer worth the blood sweat and tears of my dad’s efforts to lead while working full time as a school custodian to keep trying to make it work. The decision was made and the church disbanded just after our son was born.

We struggled to find our selves a place to be a part of again, and worked with another group trying to prove our worth to another pastor, who offered to use us and then put us aside. So we struggled to find our footing and raise our son, and then our son’s, and we moved away to find a better source of income. We would hardly be the first to regret such a move but that is another story. The first thing we did when we moved was to try to find a church home in a place that was full of churches but had only one church of the same type we had been a part of, some twenty miles away and our car was dead. Still, for a while we got rides and tried to make the tenuous connection we had flourish while working opposing shifts full time to keep up with the bills. God in his mercy moved us to a better place in another city, and we struggled again to find a church home. This time though, we discovered that something was not right with our youngest who was too old for nursery but was not functional enough for age appropriate classes and stood in the toilet when they agreed to let him stay in nursery.  We were struggling as a couple and struggling to raise our boys and struggling to figure out how to be a family when we were so broken and without Godly mentors to help us. For the first time in my life, we were unchurched.

In case you are unfamiliar with the term, unchurched is a term that is used in ministry circles to refer to people who are out of their place- they are technically Christians, but the connotation is that they are rebellious or back-slidden, and who are a target group for church outreaches. They are not seekers- people who don’t know Christ but who are wanting to find out more about God and come into church- but again I digress- we are not talking about what church linguistics, but about my life.

Every conversation with my mother was the same thing, are you doing to church?  Guilty and sheepish I would try again to bolster my courage and try to figure out how to make my child acceptable, and make my husband want to go to church, even though he wasn’t sure church was where he wanted to be at the time.

A year or two later, we moved again and started the process again. Easter Sunday my parents came up and we took my young son’s to a local church. The older boy did great, the younger boy well.. the children’s church worker told me point blank- if you want to bring him again, you will have to come and sit with him in children’s church. So there it was. By then we knew he was severely autistic and even though he went to school and had people working with him, he could not manage a regular classroom setting and follow directions. I remembered then the reading I had done as part of the ministry team I was on that was church lawyers explaining how to protect a ministry from being sued by parents- the big news was pedophiles in positions of trust- and churches needed to protect themselves by doing background checks on all volunteers and making sure that no one volunteer was ever alone with any one child ever. So my son who needed a person to be a one – on – one helper was out of luck.

From that experience on I went to church. I talked to children’s pastors. I tried to figure out a situation where I could bring an unpredictable kid with some pretty intense behaviors including but not limited to pinching and howling and bolting out of a room or destroying stuff if he wasn’t allowed to do whatever else he pleased. Now no one ever said they didn’t want us to come to church, but there was never a solution to how to take my growing family which eventually ended up with two severely autistic kiddos to church and be a part of things. That was on us. We had to sort it. And literally for years it has been the same thing. I have gone to church, sometimes taking one of the boys with me, but more often than not leaving them at home under the supervision of my husband who loves them, and loves God and wants us to all “as many as we can figure out how to” go to church, but again.. how?

I thank God that we live in a time when I can log into a church service that is going on and participate long distance, but it isn’t the same as being in church.

I am frustrated because I can’t figure out how to make us unchurched. Maybe what we are is shut ins- again another category created by church leaders somewhere to describe church members who are too ill or physically frail to attend church any more. They used to warrant special pastoral care, but then who wouldn’t want to go visit a bitty mother or father in the faith who ooze with  faith and dignity and  who in spite of their frailty are strong and encourage those who visit them. I may have strength to offer but dignity can go out the window at any moment here- its part of raising these young men- and I suppose that is my quandary.

My young children who couldn’t sit still and listen, never got the love of Jesus in Sunday School. My one’s who could sit still never got to make friends and go to camp because we were never able to be a part of a body enough to make sure they were always part of what was going on. My sons love God, but they are not churched.  My oldest is almost 23 now and he hasn’t been to church in years. My next church capable son has been to church less than a handful of times in the past three years. My husband has been about the same amount of times. I was going regularly, I was even serving monthly, but my family?  We are a Christian family, who love God who want to honor  him and serve him, and as a couple we are studying Theology together to prepare us for ministry and yet- and yet- we are for all intents and purposes in the bean counters charts- unchurched.

I am  uncomfortable with my comfort with going to church myself.  I have lots of people from church that I call friends- facebook friends- but no one I interact with outside of church. I am bumping into this notion that something is very wrong with how this is playing out, but I don’t know how to fix it. I don’t know  how to fix my sons. All I can see is what I can’t do, and how they have acted every time I have tried to take them  to church to be ministered to. And.. and.. there is so much in my heart to say and so many broken dreams I could express but lingering here is painful,and grief guts hope and undermines faith so I will cut this short. I will only say- God my God- how do I raise my children in the way they should go if I can’t find it myself?

 

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On Being Alone

It has been a long time since I have written here. My writing over the last month or so has faltered some because of an extremely busy schedule and a need to think and pray deeply that has left me little energy to write, but something sparked in me and I thought writing about this one idea in particular would be the best way to engage in a public manner with the idea that is stirring in me- loneliness.

As a mother of special needs kids, I don’t often get to interact on a daily basis with people outside of my home in any really engaging activities. Because of this, when I feel alone, I had in the past, assumed it was a product of my life circumstances. I am here with just my family all the time, so because I can’t get out I am alone- I am walking alone so I am alone.

Yet today I was conducting an interview with a someone whose job ensures that she is constantly interacting with other people, day in and day out. Yet her one complaint about her otherwise rewarding life was loneliness. Here is a woman who has so much stuff going on, doing so many things that I have a hard time fathoming it all, with other people, all of the time, and she is lonely.

I am beginning to suspect that this is a common symptom of what we call modern life. As one pastor put it recently, we have increased our accessibility at the cost of our attention- we are more connected than ever with technology, but we have less contact than ever with those who are a part of our lives.

I have more information than ever about people in my life.  If any number of people post something on Facebook, I see it. I see the kid pictures that are so adorable. I know when someone is getting married and get to see their wedding pictures or enjoy their pictures from the vacation. If they had a really good time somewhere and posted about it- I see it. But all of these shared moments are not really shared moments at all.  They are shared snapshots of moments that are not shared experiences. It is the difference between watching highlight film for a game during a news cast, and being at the field, watching the game in the moment. I might gain knowledge of the score, and even get to see the game winning play, but its not the same as being there. The difference between Facebook posts and real communication is that somehow, because we share so much, we think we are connected, when the reality is that we skip making time to connect, and have forgotten how to communicate.

The same is true with how we use our phones. Instead of having verbal conversations, we tend to favor texting each other. But while texting mimics conversations and is convenient in that we can string our conversations out over an extended period of time if necessary, it is not the same as talking. It can’t be. Text, even with cute little pictures that are supposed to convey some idea of our emotional response, is not real time, in the moment, connectedness. So even though we are more accessible via our technology, we are less and less connected to each other on a daily basis. We don’t have to take time to invest in our phone calls or in our sharing. We don’t have to pick up the phone to spread out joys or share our sorrows. We can sit alone in our rooms with our computers or phones and talk to everyone – and no one- at the same time about our deeply felt joys and pain, and never get the hug or hand on the shoulder affirming that we are not alone. Yes people reach back through their computers,and say kind things, but we never connect- we just affirm or disapprove- from a safe distance that doesn’t have the power to break our hearts or soften our resolve the way a broken person across a table from us would.

I don’t know how to fix this painful disconnection. I am not going to advocate being a Luddite and ban technology. Nor do I think that setting limits on accessibility is necessarily the answer. I do think though, that we need to figure out how to connect again. I think we are lonely because we have accepted the notion that being there for someone via technology is enough, and have allowed being connected to be replaced with being accessible, and we are discovering how desperately wrong we have been.

Selah-

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Summer – Dreams and Things

I want this to the THE summer. It pretty much has to be if there is going to be a “THE” summer to remember. My oldest son will graduate from college next December, my twenty year-old will graduate from high school next May- and if there is going to be a summer with all my boys well and happy and celebrating the goodness of God is has to be now.

I know two things. I can’t make it happen. Its impossible. If I am looking to me to make dreams come true then – it won’t happen. However, God can make it happen. Nothing is impossible for God. I believe God wants to heal and restore them. I believe God wants to richly provide for us. I believe that God has a way. I am not looking to me. I am looking to God. I may fail, but God is able, and faithful, and if I can give him what he needs from me – my faith and my trust- I know this can be “THE” summer.

What does “THE” summer have in store? For one- there are two wonderful week long conferences I want to be a part of. The first is June 1-5 – the Marriage Meeting from Faith Life Church in Sarasota, Florida. The other is June 29-July 4, the Southwest Believers Convention in Fort Worth, Texas.  I want to actually be in the meetings this time around instead of watching them.

Also happening during “THE” summer is a trip to Chicago to meet grand dad for the first time, and to see the other family members that are there, plus visiting my husband’s former stomping grounds. I also want to spend some time at Disney World or Disney Land, and give the guys a trip full of happy memories. We only have time til the first week of August and there’s a lot to do.

What I don’t want to happen is what is scheduled to happen- things stay the same and we muddle through, barely making ends meet and feeling stuck, unable to do anything but make do within the four walls of this house.

I would say I have faith in God that He will do this- but my heart is busted and broken and I don’t even know where to start to believe God for his goodness manifest in my life and in my son’s lives. I didn’t even have the gumption to make it through a church service with the guys this week- how can God get me to trust him when I so completely expect to fail?

God is awesome in his power- He is able to do exceedingly above all we ask or think according to his power that is at work within me. If there is a way to get me where I need to be, he will find it.

Grace and Peace.

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Amazing Grace- In Life’s Ugly Moments

When we think about how amazing God’s grace is we most often associate it with forgiveness of our sins. After all, we are acutely aware of our failures, and when we look at how amazingly holy and righteous God is we are amazed at just how merciful and great he is in forgiving us and making us right with him. But as awesome as that is, I want to talk about how God graces me in life’s ugly ugly moments.

Today I had a particularly odious chore that needed to get done, and I was the only one who was going to do it. My twenty-year-old autistic son relieves himself in the bathroom- but he doesn’t use the fixtures as they are intended. As gross and awful as it is to describe, let alone read,  the chore that had to be done today was scrubbing the bathtub in order to remove blobs of fecal matter. It was a chore that was just as nasty as it sounds. While this was not the first time I have had to do this chore, it is not a chore that one gets used to.  Yet in the middle of the moment, when I was in a position where I should, by rights, have been grossed out the most, I found myself singing a precious gift from God. It was a beautiful melody and it captured and held my attention as I was bent over the tub with a scrub brush scouring away.  What a precious moment. To have my heart filled with praise and beauty as I faced one of the ugliest things in my life. It is not logical or reasonable. It is a God so loves me moment. My great and good God lent me a song  more beautiful than the ugliness I was facing, and my heart was protected from hearing lies about my son and about me. There was no room for contemplating the ugliness except in making sure I got the mess cleaned up. God graced me to walk through the ugly with a song in my heart that came out of my mouth and filled the tiny room with melody instead of complaining.

God gives me grace to endure hardship and continue to look to him in the middle of the storm of life. He will do the same for you.

Grace and Peace.

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One Little Victory – Laundry Style

One little victory today is going to be getting more laundry done.

Last night I finished folding the last of the loads of laundry that had been waiting in a basket by my desk for my attention. I was so very pleased with myself until I discovered that one of my sons really didn’t have any short sleeved shirts clean. I had been confident that as I folded the laundry one would show up. It never did. So I rushed in and shifted the clothes from the washer into the dryer and started another load of laundry, making sure to include a couple of his shirts in the mix. The basket by my desk is full again- this time with the load of laundry that I pulled from the dryer at 11 pm so I could get the load of clothes with his shirt in it to dry before I went to bed. On the up side, he had the shirt he needed this morning. On the down side, I have this load of laundry to fold still, and there is a load in the washer that needs dried and several loads in various rooms waiting to be loaded into the washer and washed.

Of the five people in the house that I do laundry for, two are doing really good if I can get them to move their dirty laundry to the washroom. Another is capable of swapping laundry and hauling full baskets of clean wash in here for me, or starting a load of laundry. Technically he could do laundry, but he can’t be trusted to do a load of laundry from start to finish independently. If I ask him to do it I have to walk him through every step, because he conveniently forgets all but the most basic steps, because he is afraid that if I know he knows how to laundry his list of chores will grow. Consequently, he whines and harrumphs and drags out the process so much that I won’t want to ask him again any time soon.  My husband can and does help with laundry on occasion but its something he doesn’t care to participate in house chore wise, and since he does other chores I like less, it ends up being a fairly fair division of labor if I do the laundry. I am the one who cares that clothes get folded or hung up after being washed. If I ask my fourteen-year-old for help I end up putting clothes that need to be hung up back in the dryer to loosen the wrinkles some, because he never recognizes that they need to be treated differently. He sighs heavily if he is asked to fold, and he is careless in his efforts, so that there is a sense that the exercise is a waste of everyone’s time. I think if one really cares about something is supposed to look when it is done, than they should be the ones who do the bulk of the work to get it there- or they will be frustrated over other peoples lack of effort.  I guess this is all to say I really am the right person for the laundry. It just always amazes me how many clothes need to be washed just as I think I am finally finished with the last round of laundry.  I guess I shouldn’t be, but I am .

So today as I wage war on the various piles of unwashed laundry, I will focus on winning small battles- one load of laundry washed and put away at a time.  I will climb the mountain by climbing small hills, one at a time, over and over again. Maybe by the end of the day all the baskets will be empty, all the linens will be fresh, and I will look back on the day able to celebrate a bigger win. But if there is still wash to be done as I tuck myself in, I won’t despair- after all- all I have to do is climb a couple more hills- and that’s not to hard a thing after all.

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The Strong Scent of Urine

As a mother of two autistic young men, news articles and clips about families with autistic children automatically catch my attention. It makes me sad to read about family situations where the police have had to step in because the parents just couldn’t handle the stress and strain of taking care of the needs of their kiddos. Unless they cite egregious details about obvious abuse or starvation I never blame the parents for whatever extreme measures they resorted to in trying to figure out how to keep their kiddos safe and still get whatever else they were trying to do done. I don’t judge. I know just how hard it is to live with kids that have no sense of what is safe, no sense of what is decent, no sense of what is acceptable, so I can see how being exhausted and frantic over a behavior can drive a parent to take unusual and extreme measures to try to make life work.  One detail that often is cited by the news is that the police found the child surrounded by  a “strong odor of urine” in the bedding or in the room.  They offer the offensive smell as proof that the child suffered horrifically at the hands of inept parents.

That bit makes me roll my eyes. While it is unusual in the general population for a child who is over the age of three to not be toilet trained, and finding the space where the child spends most of their time smelling of urine would be an indication that something was not right, it’s just not the same with autistic kids. As a parent I of two severely autistic guys, toileting is one of the biggest daily life problems I face. My younger guy is twelve and has no problem with wetting himself. None. He sometimes cooperates and will go sit on the toilet for a while, knowing what we want him do to and not doing it, and then ten minutes later have everything he is wearing, and the whole area is is sitting at soaked through a super absorbent protective undergarment. His bed is covered with a waterproof bed cover to keep him from ruining it- but that doesn’t protect his brother’s bed if he doesn’t want to lay on his own bed. I have the most washable cushioned chair in the house covered with a rubberized crib protector, covered by a towel. My efforts there do nothing to protect the other two upholstered chairs he migrates to because they are more cozy. We chase him off those chairs as often as we see him sitting in them, but we still have towels on them, frustratedly trying to clean up soaked areas that we were not fast enough to prevent.  As I write this, there is a washer full of urine soaked towels and blankets being bleached in an attempt to rescue them from the offensive odor.  The carpet in the living room has areas that reek of urine. The futon in the next room that only he lays on is constantly under assault from the offending liquid. If ever, God forbid, someone came into this house to check on their well being and used the “does it smell of urine” acid test to see if I was doing a good job of taking care of him, there is no way I could pass the test. No matter how many loads of laundry I do,  no matter how much I use a carpet and upholstery cleaner, until I am the one buying the furniture and I can afford leather, our seating will be a ruined mess covered over with clean towels and blankets in an attempt to offer to everyone but him a place to sit and watch a movie.  I hate barking at him to move to an area that is somewhat protected from his accidents, but I don’t have a better plan or the money in the bank to go shopping for a better situation when it comes to my furniture. We,  like those parents cast as monsters in the news, are doing the best we can. We have been blessed with never feeling that the only option we had in figuring out how to stay sane in our crazy life was one that would be seen as abuse and turn us into the villains of a sensationalized news story.

Until next time-

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