Monday, April 14, 2014


My son puts a hole in the wall...

"Why don't you put him in a home?"

My son bloodies his head...

"Do you think you'll put him in a home someday?"

My son attacks me...

"He's out of control. He's going to end up in a home."

My son is in a home. My home. Our home.

Do you think making the decision to have your child live somewhere apart from you is one that comes easy? You might as well take my brain and ask me to think. Or take my lungs and ask me to breathe. Or take my heart and ask me to live.

My son and my daughter are a part of me. They are as vital to me as any vital organ in my body.

My son was hospitalized twice in a psychiatric wing of a children's hospital. I did it when he first exhibited aggressive behavior, on the advice of a medical professional. The first time I dropped him off I went to the parking garage and wept fiercely. I felt like the worst parent in the world because I couldn't solve his problem so I was dumping off the responsibility on someone else. The second verse was as same as the first. Neither hospital stay did a thing for him, and it is not something that I will do again.

We have had Children's Services involved in our lives. Two years ago when we were robbed, the policeman taking our report turned around and called Children's Services on us. They came to our house three days later and accused us of neglect because our house was messy. No amount of conversation would convince this woman that we do take care of our kids, it's just that life is hard and sometimes they mess the place up faster than we can clean it. She gave us two days to clean the place before she came back.

You had better believe that we busted our asses cleaning that place. My wife was worried that they would take our kids away. Me? Not so much. I had a contingency plan that involved me taking the kids and hitting the road. If they wanted to try to take my kids they would have a fight on their hands. It was not going to happen. Would I really have gone on the lam with my children? You bet your sweet bippy I would have.

The advice flows freely from the lips of those who don't have to make the decision. But the decision to place a child in a group home is not one that comes as easily as what to watch on TV or how many anchovies to put on the pizza. (Hawaii Five-O, and double.)

An adult child? Different story altogether. It can be a good thing, when a child reaches adulthood, for them to learn independent living skills and develop social relationships outside the home. But even in that case, it is still up to the parents and no one else.

"Shouldn't you put him in a home?"

He is in a home. My home. Our home. Matthew, Rebecca, Laura and myself. And as long as we are alive and capable of doing so, my son and my daughter will have a guaranteed place in my home. If I am changing diapers when my kids are 20, I might not like it, but I will do it. My commitment to my children is that strong, that deep, never to be questioned.

Sunday, April 13, 2014

Church or something like it

Palm Sunday. The Sunday where church people across this great land of ours burn their old palms, pick up new ones after the service, their kids play with the palms until strands of them are all over the living room floor. The service in liturgical churches is usually longer than most Sundays, because they read the entire story of THE PASSION out of one of the gospels. Sometimes it's the only time women get to read from the gospels in front of the church the entire year. In entertainment-style churches they likely rehearsed the whole scene and plan on presenting it live, maybe even with a donkey if they really feel adventurous. In fact, if the donkey craps on stage they consider it a bragging point and will talk about it for the next year. And atheists? They are just now rolling out of bed, grabbing a cup of joe and trying to decide if they want to mow their lawn for the first time this season.

Palm Sunday. The Sunday in which you know that there is only one more week in the Lenten season. Moms everywhere probably have some chocolate hidden in the cupboard for the time when she is freed from her Lenten vows and can consume her sweets with passion. No pun intended. Dad has been cranky for lo these 40 days of Lent, and now sees people as giant walking cigarettes. He almost smoked his son's shoes last night. Junior and Juniorette just want Friday night pizza nights to continue. Officially. Unofficially they have been consuming meat-laden slices from Mr. Sally's Pizzaria the whole time.

Palm Sunday. The Sunday in which every year I celebrate by posting a picture of my palm on social media. Hee hee hee.

Church. Something that at one time in my life consumed my attention and desires. I started this blog back in 2005 because a friend of mine wanted to know what I got out of all the diverse types of churches I've been to, and the resulting essays became too long for standard emails. I've seen them all. Greek Orthodox. The traditional Latin Mass. Non-denominational. Baptist. Really, really Baptist. As well as the Catholic Mass I grew up with.

I was 15 years old when I was born again, when I renewed my baptismal promises, when I was saved, when I went through a conversion experience. I don't care what terminology you use, I just know that at that time it meant something to me. It changed my life. I threw myself into Bible reading, church attendance, and surrounding myself with all of the trappings. Christian music. Christian books. Never had Christian toilet paper but I can guarantee you that somewhere, someone has made it.

But it's 32 years later. And 32 years later, at the age of 47, I can't say that I really give a shit.

This morning, Palm Sunday, I woke up at 2:30AM to discover that my son had opened all the cupboards and raided the refrigerator. We were up until 4:15AM. At 7:30AM I got up again to get my wife up so her and my daughter could get ready for church. At 8:00AM the storm began and I had to once again clean my son's head of blood and pieces of wall. At 8:15AM I was scrubbing my son's bedroom floor of poop. At 8:40AM things had finally calmed enough that I could finally give my son his medicine, medications that are becoming less effective by the day. But I still give them.

Now tell me. How am I supposed to take seriously an argument about the proper type of communion bread? Should I care whether baptism is carried out by sprinkling, pouring, or immersion? Should I believe that God is checking my attire as I walk in the door to make sure I am wearing a tie? (And I'm sorry, but ties are the devil's noose and I hate wearing them.) Is listening to a song by The Who wrong? And is listening to a cover version of a song by The Who performed by a Christian band any different than enjoying the original? How am I supposed to take seriously a sermon about the sanctity of marriage when the same pastor is having wild, sloppy, sweaty animal sex with the secretary who is not his wife?

I don't.

Hey, I read the Bible. And I take seriously the teachings of Jesus the Christ. But the organized version of it can burn to the ground for all I care.

Of course, there's a problem with that approach. Suppose I eschew church attendance for a coffee clatch at the local Starbucks. Every Sunday I choke down a latte and muse upon the issues of the day (which for me are autism, autism, and, well, autism). Soon I meet another parent who gets it, and we have coffee together. After awhile another joins us. We've developed a community at this point, something that church is supposed to be but often is not.

Our community becomes too large for the Starbucks, so we move it to the food court at the mall. Soon we decide that we want to get some input from doctors and others who can give us something we can use with our kids in our daily life, so we rent an empty school on a weekly basis where we can have childcare and invite even more parents. Life is good, the speakers are edifying and people are happy.

Inevitably discussions arise about the nature of our little coffee clatch. The original Starbucks group want to go back to the simplicity of having coffee, and don't care for the organized approach. The next generation want to get some name speakers and not just local doctors. A small group of parents start reading Jenny McCarthy's new book and eventually start a Tuesday meeting for Jenny fans. Another group suggests that we are going about this all wrong, that instead of considering autism as a burden and something to fight against, we should celebrate the diversity of all things autism. They start their own Sunday meeting for parents of that stripe.

And BOOM. You have now done exactly what you fought against when you stopped attending church. Only difference is the absence of a deity. Except for the people who worship J Mc instead of JC.

I can't take these kinds of divisions and petty bickering seriously, whether from church or other factions, because I have real things I have to take seriously. I take my son and daughter and their care seriously. This is my full-time job; hell, this is my full-time life. This morning I scrubbed real crap off the floor. I can't take time to deal with metaphorical crap. You want to convince me that the Pope is the antichrist? Keep on walking, and don't let the door hit you where the good Lord split you. Communion wafers vs bread, wine vs grape juice, pews vs chairs, organ vs guitar? Repeat after me. "It just doesn't matter! It just doesn't matter! It just doesn't matter!"


"Does the LORD take delight in thousands of rams, in ten thousand rivers of oil? Shall I present my firstborn for my rebellious acts, the fruit of my body for the sin of my soul? Men, women, boys and girls, The Lord has told you what is good. And what does the LORD require of you ? To do justice, to love mercy, and to walk humbly with your God?"
---Micah 6:7-8

"Greater love has no one than this, that they lay down their life for their friends."
---John 15:13

Saturday, April 05, 2014


I had a friend on Twitter retweet something to me, a question she was asked. (and for the record, I hate the word "tweet" to describe communication, but when in Rome....)

"Who are ASD Acceptance and why are they boycotting Autism Speaks ?? Did I miss something?"

I've written about why I don't support a boycott of Autism Speaks (right here), so I don't need to rehash that. But ASD Acceptance? Sounded like an organization or a Facebook page or something I should check out.

ASD Acceptance is indeed a Facebook page. (ASD standing for "Autism Spectrum Disorder"). They believe that what the world needs now is acceptance, sweet acceptance; they want Autism Awareness Month to be about the fact that Autism shouldn't be promoted as a disorder to be "cured" but rather a diversity to be celebrated. To that end, if you want to see autism end... yeah, they don't like you.

They reposted a picture from another Facebook page which was a collection of quotes from other Facebook pages and blogs, one of which read this way:

I just feel like I am supposed to accept this horrible thing with a smile on my face and pretend that it doesn’t suck and I am tired of it.  I am supposed to pretend that all of the uncertainty, all the frustrations, all the tantrums and all the pain is just something that I accept and happily deal with.  I read a comment the other day from a mom that said she “wouldn’t have her son any other way.”  I don’t mean to discredit this mother at all, but that’s just something you tell yourself to make it not hurt so much.  I love Mara exactly as she is, but if I could do something to take away her autism, I would do it in a heartbeat.

The comments were plentiful:

Karla's ASD Page BTW: It took me about 10 min to find and make this poster. Not hard in Autism Awareness month.... Anyone still have questions about the hate?

Jill Canner McCormick I cannot believe the pure Ignorance! I have 3 kids and 2 have autism and we embrace them for who they r! So many people want to fix those that have autism!! Why?? UGH!! They SUCK!!! :((

Angie Melissa Whoever the parent is who wrote that I wonder if they'd cope with any child without whinging.

Jonathan Clement I don't think autism is the problem. I think the problem is fault-finders.

Kirsten Oswin Oswald Thow Whoever made this blog sucks!!!! 'Austism is unacceptable..' Uneducated douche.

Hollin Sutherland Goodwin They are awful parents. I know it's frustrating at times and autism is hard on those of us who have children who are more severe, as my son is, but I don't hate autism. I couldn't hate any part of any of my children. I worry for his future-will he ever be independent or will he ever TALK--I want him to have a happy life. Not one filled with people hating him because of his autism. It's so so sad. (emphasis mine)

They are awful parents. Okay, Hollin Sutherland Goodwin, them's fighting words. When someone insinuates that I am an awful parent, I am going to have something to say about it. And another something. And another.

Neither of my children talk. Of course, talking is not necessary for communication, any one of a number of methods will suffice- pictures, Ipads, assistive communication devices. My son is good at being able to show me what he needs; of course, I have had years of practice in learning to anticipate his daily routine. My daughter, on the other hand, does not communicate well at all. Her method of communication is to pull your hand, or push you from behind, and if you don't get the hint right away she whimpers. Then cries. Possibly even screams. And when that happens, all hell is about to break loose.


That sound means only one thing- a new hole in the wall. I rush back to the bedroom where my son is holed up (pardon the pun) and try to calm him down. It isn't working. BANG! BANG! BANG! If I am lucky, I can keep him away from the furniture. But not this day. BANG! And blood pulses from an inch-long gash in his forehead.

He finally calms down when I explain to him that I have to clean his head. I press a towel to his head once, twice, three times. I get the blood to stop flowing, but it is obvious that he and I are off to the emergency room. I pack the diaper bag, I pack the Ipad and Nook, and off we go. ER trip number five this year.

When we get home he wants me to go back to the bedroom with him, but he doesn't want me to leave. He wants me to kiss him. Again. And again. Whenever I ask him what he wants, he leans in for another kiss. I stand there and kiss him as long as he needs. Finally the Ipad beckons, and he gestures for me to leave.

I check on him later to clean his wound, change his bandaid, and... oops- what did I just step in? A rhetorical question, for I know what I just stepped in. He took his diaper off, and the poop that he didn't try to cover with a t-shirt or a bedsheet is now on the sole of my foot. I hop to the bathroom, clean off my foot, and then grab the scrub brush and laundry soap and head back for my umpteenth cleanup job.

My daughter emerges from her room. What's this? She's nude? I shield my eyes and call for my wife. The brush and soap do not leave my grasp. I know what is coming up.

And Hollin Sutherland Goodwin thinks I am an awful parent because I think that autism sucks. Hollin, are you listening? Autism sucks. AUTISM SUCKS. It has robbed me of my livelihood, it has robbed us of our family life, it has robbed my children of their future.

Hollin Sutherland Goodwin, how in the world can you participate in a site that promotes acceptance and listening to each others stories, and be so quick to dismiss mine? How can you decry judgmentalism and then tap that same well of judgmentalism to dismiss the concerns of my life and my family? How can you talk about diversity yet leave no room in the discussion for any stories other than your own and those who agree with you?

Hollin Sutherland Goodwin, I am not an awful parent. I don't do many things well, but I believe I am a damned good parent. When parent-teacher conferences come up, I am there. When my children are sick, I am there. When my son took an accidental overdose of medication, I stayed up all night long with him, slept for an hour, and then went back and stayed with him some more.

When the road gets hard, and it gets hard a lot, I don't bail. I am committed to my children. I AM THERE.

I hate the infighting that seems to be frequent among those parents of autistic children, and those with autism themselves. I generally don't like getting involved. But when you question my parenting desires and skills? I come out shooting for bear.

I don't accept my children because I hate the condition that has robbed them of so much? On the contrary. I love and accept my children more than anyone could possibly know.