The Price of Hope

These past few months have been hard. Really hard. Hard on my son, hard on me and my husband as individuals, and hard on my marriage. August was full of anxieties – anxieties about events that he was excited about, that he wanted to happen, but anxieties nonetheless. His birthday fell mid-week this year, so we decided to do a super small family only party the weekend before and then an even super smaller friends only party the weekend after. That way the social expectations of a large party with many people, activities, and gifts would not get in the way of his enjoyment. He did fantastic at his parties, absolutely wonderful. But the feeling of “something is coming,” something different from the norm, makes him tense.

Also, the Friday after his friend party, we left for Iowa for a 9 day trip to see Javan’s aunt and uncle and newest baby cousin. That one he had more mixed feelings about and the anxiety was greater. He would be leaving home for a long time, leaving dad and his dogs and his bed, leaving normal. Not to mention that he had been worrying for approximately 9 months about everyone falling in love with the new baby and treating him like yesterday’s trash.

He does great on trips. Usually. The trip to Iowa left me pulling my hair out. But we made it. We got there on a Sunday, and his behavior was absolutely horrific from the start. Embarrassing, really. I love my brother and sister in law, and I didn’t want them thinking that as first time parents they would never let their kid act that way, or whatever. The good news is that he never once showed aggression toward the baby, but only love and gentleness. I was soooo relieved. But when he wasn’t directly interacting with her, he was being as ferocious as possible. Wouldn’t obey a single thing an adult asked of him, ran away from us, threw stuff, screamed and cried…atrocious. Humiliating. Did I mention that these are Javan’s godparents as well? If something were to happen to Japheth and I, they would inherit our kid. I know if I were in their position, with a new, perfect, innocent daughter, I would be terrified of inheriting this boy. That was really hard for me.

And, maybe even harder, for the first several days we were there at least, I felt like we were ruining everyone’s vacation and all the plans that had been made. Javan’s tummy began hurting the very next day…he hadn’t made a bowel movement in at least a week. I knew that it was just due to the parties and the trip and everything, and had been increasing his daily laxative, but it wasn’t helping. So, Monday and Tuesday, we couldn’t leave the house. He sat on the potty fighting me for most of the time. We did all kinds of horrific things to his body Tuesday trying to get the bowels to move. So much laxative that the word overdose is a hilarious understatement. Suppositories. Enemas. We’ve been there so many times before. And I hate it more every time.

This time, though, the enema wouldn’t work…like, I couldn’t squeeze the bottle at all. The bowel was obstructed. We’ve been there before too, but never to this extent. So, Wednesday we went to the ER. He was given a really scary sedative and the obstruction was removed. I didn’t even notice the poop. I was too busy trying not to freak out about his face. They used what they call a conscious sedative. Basically, his eyes stayed opened, but I watched him leave them. Worst feeling of my life. He wasn’t there. I held his head and talked to him the whole time, but he never saw me. Afterward, the doctor told me the impaction was about the size of an eggplant and that even one of their super-enemas wouldn’t have been able to get that thing out. So, I guess that’s affirmation that this hospital visit was the right choice. As he was coming around, he asked in a super scary monotone, altogether autistic, tone, “What’s going on?” He was still staring, didn’t have control over his body at all. He kept asking me why I had three heads and why I looked like a scary monster. Thankfully, he was rational enough to listen to me when I told him to close his eyes, that it was all just a trick the medicine was playing on his brain, and that I was still just Mom. Then he slept for a few hours, and when he woke up, he kept trying to sit or stand up, but he had absolutely no control over his muscles and just kept flopping over…it was really hard to keep him from hurting himself.

The scariest and most traumatizing part of this experience for me as the parent, is that I experienced what life would be like watching my son fall deeper and deeper into autism. If that happened, I don’t know what I would do. I don’t want my boy to leave like that ever again. Ever. The only time I’ve ever seen him slip into a deeper autism like that was after he had his four year immunizations. I was so scared after that experience. And I am now more terrified than ever to further immunize him. I don’t know what I will do about that, but I will have to decide soon.

Since we’ve been back from Iowa, about 6 or 7 weeks, his behavior has been unbearable. He is so aggressive, so so very angry. He’s defiant to an extreme. He does and says things to hurt me or his dad and then smiles and laughs and takes joy in our pain. He does not resent hurting us. Try to balance this with the sweet, loving boy who wants to cuddle endlessly on the couch. It’s impossible. There is no balance.

Last week, we had a psychiatry appointment. At this appointment, Javan shared with his doctor some specific things we’ve been dealing with that I can’t even speak about on my blog. I’ve never kept things from my readers, but this is so intense I feel like I have to guard him. The psychiatrist said several times, “This scares me.” “There isn’t a medicine for this.” and “I’ve never seen this problem so intense in a child this young.” Every single professional tells us something along the lines of “I’ve never seen this.” We’ve been seeing this doctor for about 18 months, and this is the first time he’s said that. I had such hope that Javan really wasn’t that bad or that different, but there it goes. He is still a wonderful doctor and still wants to work with us, but this is the first time he’s admitted that this might not get better. So I asked what are we supposed to do if medicine can’t help? And he shook his head and responded, “We just hope behavioral therapy will work.”

We do have a play therapy appointment scheduled for mid-October. We’ve tried this twice before and each time was spectacularly insufficient. I have a feeling that this lady can help. I talked with her on the phone for about half an hour and she feels like she can handle Javan. Most people, most professionals even, tell me that they are not qualified to handle a situation like ours. That can leave you feeling very hopeless right there.

Hopeless is a really, really good word to define how I’ve been feeling. Depressed. We didn’t do school the last three days of last week because I just couldn’t take the constant tug of war between Javan and me. Everything, absolutely everything, is a fight. Our world has shrunk so much that I feel more isolated than ever. I’m even becoming isolated in my heart. We don’t go to friends’ houses because Javan will hurt their kids, their pets, them, their stuff, anything. I can’t count the number of half-filled shopping carts I’ve had to abandon because his behavior was impossible. I desperately need to get my car registered…it is way past due and we’ve had some close calls. I tried this week, but there was absolutely no way I could hold a conversation, much less do paperwork, with his behavior like it was. No way. Things aren’t getting done. Life isn’t getting lived. And it has to change.

So, we’re going to change it. I’ve grasped at so many straws trying to make our life more livable it’s not even funny. Many are documented in this blog. Some are too shameful or silly to speak of. Remember when I tried to train Morton to be Javan’s service dog? Yeah, right. I don’t have the time or physical or emotional energy to invest in training a dog that really doesn’t have the temperament for it anyway. I did tons, and I mean tons, of research online recently looking for how to get a service dog for…whatever it is that Javan needs. And I found that there are way more kinds of service dog than I knew. Autism service dogs are pretty easy to find, but they won’t be enough for Javan because his needs far surpass that of just autism. His bipolarity, manic and possibly psychotic episodes, and the resulting aggression are not typical in autism. I found one man that can provide a dog for us. One. And we’re going to do it.

This guy has been training dogs forever, all types of service dogs, even police dogs. His name is Bob Taylor and his organization is called DogWish. I wrote him an email and said here’s what’s going on can you help. He responded that same day and said, “Yes, I can help!” He can train a psychiatric service dog that can foresee and forestall aggression, get between Javan and a person he would otherwise hurt, tether to Javan and keep him from running off when he’s scared or angry, even lay on top of him if he needs deep pressure during a rage.

There will be sacrifices, but this is the price of hope. We will need to find a home for our Morton, and possibly even for Pepper although I haven’t come to terms emotionally with losing her. We are going to sell things to earn money and we will have to work hard to fund raise. We will need to travel to California once the dog has been trained so we can learn to work together as a team. This is a lot of change. I should buy stock in Miralax. I needed hope and couldn’t find it. If this is a straw to grasp at, then so be it. But maybe it will be the miracle we need to pull us out of this desperate isolation. We’re taking a leap of faith. And I have hope once again.

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1 Comment (+add yours?)

  1. Ruthie
    Oct 01, 2012 @ 13:42:38

    I am super excited about the dog possibility!!! I have had several friends with service dogs and it was all very positive. This can help you and Javen both.
    I have heard similar statements from Doctors. Mostly like “My, that is interesting isn’t it!” and “Gee, that’s a new one on me”. But hopefully you have a doctor who is interested in learning still and they will look into new ideas on how to handle this new item. I have faith in you Krista! You guys can get thru this and grow from all this. You are all in my prayers. Ruthie <

    Reply

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