Decisions

When does a difference become a disability?

Harley likes to be home. He likes to game and play the Xbox. He likes to go out to eat with our family. Saturday was the Fourth of July. We had planned on having a family night at home. We thought we might pick up some fireworks from Dollar General and set them off in the front yard. Then Harley got invited to go watch the fireworks at Bishop Park with his two friends and the family of one of those friends. He didn't want to go....I made him. He had a good time.

The way I see it there are two different ways of looking at this. In one of them, I need to learn to respect my son's differences. He doesn't like doing things outside of his very small comfort zone. It makes him UNcomfortable. He's happy being at home and doing his normal routine things. If he's good with that, why shouldn't I be? After all, I don't particularly like big group events either and I would be highly pissed if someone made me go when I didn't want to. Why shouldn't he get to make the same decisions?

The other way of looking at it is that sometimes in life, you do things you don't particularly want to do. It's better for him to learn how to do that now, how to step outside of his boxed in comfort area, now with the small things. That way when he gets older and it becomes an issue of getting a job, going to the doctor, or a hundred other things that adults have to do and don't particularly enjoy, he will already know that he is capable of doing things that are new and different and uncomfortable.

Was it vital that he go to the fireworks show? Probably not. But there is another motive to my forcing him to go. Harley has two friends that he does stuff with outside of school, church, or boyscouts. Two. How many times does he say no to doing stuff with them before they quit asking and he has no friends? That scares me. (He seems o.k. with it.) I guess that's where my original question comes in. At what point is this just an issue of him having personal preferences that aren't as broad as everyone else's. And when does it turn into something more sinister that effects his quality of life? Despite his seeming indifference to having any friends at all, I have to believe that he would be very unhappy if these two people who have been a part of his life for so many years, one - his entire life and the other - about 5 years, were gone.

For Harley, he wants interactions to be on his terms only. Do I have the right to "save him from himself" or do I let him push people away and then deal with the consequences? Maybe when he is older, I will be more comfortable with letting him do that. How old? How about 30? (I'm just kidding! I think...)

I'm also making Harley go to Youth Conference this Thurs. He REALLY does not want to go. At all. He has to spend two nights away from home. There will be activities and places and people that are all new to him. He doesn't know what to expect. He is very unhappy with me about this. Again, I feel like it is important to make him do something new and different. The truth is that I am nervous and anxious over this. I don't like sending him. I don't like the fact that he won't know what's expected or where to go or what he's doing. It scares me. But I believe that it will be good for him, so I'm doing it. I'm making him go. And I believe in the Youth Conference program. I believe that there are spiritual benefits to going. I believe that it is better to have experiences than not to have them.

Wow. I think maybe that's what I'm really trying to get at here. I believe that it is better to have experiences than not to have them. Harley's natural inclination is to avoid experiences. I want him to have those experiences. Am I wrong to push him into it? I hope not. And if I am, I hope he at least understands that everything I've done has been because of how much I love him.

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On a lighter note, Miriam had a "blast" this fourth. We did have fireworks here at home. She declared the Fourth of July to be her "most favorite" holiday and that this Fourth was the best Fourth ever! (Every holiday that comes around is her "most favorite" and each year is always the best one so far. She lives so much in the NOW.)

I spent this Saturday sick and Miriam was a real sweetheart. She brought me her favorite blanket and my favorite pillows and some gatorade and watched movies with me on my computer.

Ryan was in a terrible mood the entire day, but it turned out he was getting what I had, so that's understandable. Plus, he and Nancy broke up and his bio grandfather is being a butthole, but that's a story for another day.

I don't have a picture of the kids on the Fourth (I was too sick to think of pictures), but here's some from Easter that I never put up here. They'll have to do instead.

Woots! for me

Can I toot my own horn a little bit? Will you indulge in my need to briefly shout, "Woot for me!"

I have a son who's "on the spectrum" - somewhere. Narrowing down his spectrum address a little bit better is one of our current projects. When he was born, no one handed him to me with words of caution or explanation about what his life would entail. (From what I've seen, even when that does happen, they usually get it wrong anyway.)

When Harley's school assessments came back with the expected results of probable Asperger's, I thought I would be relieved. Instead I went through a period of mourning and a desperate need to talk to others about what I was experiencing. I had some wonderful experiences with people who comforted me, validated me, or just shut up and listened to me. And every once in a while I got told by someone that there is just NO WAY Harley has ANYTHING W-R-O-N-G with him! They could just never believe such a thing!

First of all, let me pat myself on the back for not once punching any of those people in the face. When they said things like that, it made me feel that everything Harley and I had both been through was crap, totally invalidated, completely in our heads. Grrrrr! Since then I've worked on taking a more Zen approach of being able to appreciate that we have worked so hard and come so far that other people can no longer see where we once were.

I know that part of how well Harley is doing is partly the luck of the genetic draw. I truly believe that his place on the spectrum isn't "colored as darkly" as it is for many other kids. But (and this is the tooting my own horn part), I also believe that it is due to hard work and a willingness to explain things to him over and over and over.

Last night, Harley and his sister got in a bit of a tiff. It was over a recurring problem and she was very hurt and angry. He was frustrated and overwhelmed. I sat down with Harley and was able to run him through a process I use with him to help him figure out what Miriam is thinking and feeling. I didn't attach any criticism or condemnations concerning his behavior. I just helped him figure out what another person's experience in this was and what HE felt he should do. When Miriam came to bed that night she was glowing with happiness because Harley had hugged her and apologized and told her good night and that he loved her.

I think it's an accurate small representation for the rest of our life. Most people don't see the work that goes on behind the curtains for Harley and I. They see the end result. They don't see where he was, but where he is. To them, it looks natural and effortless. To us, it's a constant effort, but worth it!

So kudos to me for trying and loving and explaining without judging. Woots for me for often being the mom I know I need to be. And when others roll their eyes and try to make me feel crazy for believing that Harley could possible be a bit different from the "regular" kids, I'll hold my fist behind my back, smile, and say "Thank you!"

In the shadow of Asperger's Syndrome

This has been an interesting journey. I've gone from anxiety to know what was going on with Harley to grief once I knew what was going on to determination to find information to fascination with what I was learning to anxiety to hurry up and get the "official" diagnosis so that we could start working with the school system.

While I am waiting to hear back from the neuropsychologist we went to, I have been educating myself on Asperger's Syndrome - AS. I started this journey of discovery with the assumption that I was educating myself as an NT (Neurotypical). (Lets keep the smart ass remarks to a minimum here people.) Reading Tony Attwood's book, though, I came across an interesting concept called shadowing. Apparently, it's very common in the immediate family members of individuals who are "on the spectrum." (Refers to those who have been given a diagnosis that falls under the umbrella of Autism spectrum disorders.) Anyway, in shadowing, individuals show traits of AS or Autism, but to a lesser degree.

This is why I really like the imagery of a spectrum of disorders. You know when you open the paint program on your computer? It gives you an option of choosing your own custom color. Then it shows you a color spectrum. It doesn't just show the colors of the rainbow individually. It shows how they blend and melt into each other. It also shows their progression from light to dark. Well, being on the spectrum is a lot like that. Only, infinitely more complex. For example, in our color spectrum, a purple would have gradations between red and blue and then be somewhere between so light it fades into white and so dark it fades into black. With the autism spectrum, there are a huge variety, much more than two!, of "colors" that can contribute to the individual "color" of that person - with each contributing color having a level of light or dark that contributes to the overall intensity of that person's experience.

So, with shadowing, the person might have a variety of contributing colors, but with most or all of them exhibiting toward lightest end of the spectrum. And the thing is that the more I read about Asperger's, the more I can see how it has "colored" my life. Am I upset? No. I have this feeling that I'm supposed to be unhappy about this. The "NT" thing is to be appalled at the suggestion that my brain is different, but that's nothing like how I feel. It's more like a fascination, an interest, and I LIKE it. Why? ????? I don't want to be like everyone else. It doesn't appeal to me. I don't want to care about the things that I see most people caring about. I don't want to see the world the same way.

I don't mean that there aren't things that bother me. My memory issues have to be the biggest irritant I have. I cannot explain the level of frustration I experience in knowing that the fact that I KNOW something RIGHT NOW, has zero bearing on whether or not I will know it later. KNOWING that I am hearing something that I am going to forget and don't want to. It pisses me off. I HATE that!!!!!!

But what is the trade off? What if I could trade having a memory that works better for my sensitivity to touch and sensation, scents, sounds. What about the way that I don't care about appearances or others opinions or pretending to feel things that I don't or my indifference to having stuff - would I be willing to trade away my indifference to those things for a better memory? What about the intensity of my relationships with the handful of people whose existence are actually important to me? Could I trade those away to seem more "normal" or to be more interested in social norms?

The fact is that I LIKE me an awful lot. I like my bluntness. I like the way that I am passionate about things that I feel matter and completely indifferent to everything else. I like that while I can care about a person, a part of me is disconnected enough to freely admit that I really don't care if I ever see them again. I LIKE the fact that I often miss the fact that I irritate/appall/shock others or just simply make them feel superior to me. Really, I'd rather not know than know and then feel like I had to do something about it.

I love my love of language and my insistence on accuracy of expression. I don't like that I don't know how to join in a group discussion, but I would never trade that for my ability to verbally express myself in front of a group really well.

You know, even the whole memory thing comes in really handy. :-) My husband and I were discussing someone one day. He was appalled that I was willing to consider speaking to them. When I expressed confusion concerning this attitude, he attempted to remind me of something that had happened a few years previously. Apparently, this person had said really terrible things about me to several people, including Chris. At the time, it had ruined their friendship and I had been very hurt and angry. I still have no memory of it. It's like it never happened. Really. I can't remember it at all. In FACT, I can remember now having this conversation with Chris about this person, but can't remember anymore who it was we were discussing. It's gone again. And I'm o.k. with that.

My brother once said of Harley:

It's not really that Harley is in left field, it's that he doesn't know there's a game going on.

Then either he or I took it a little bit further. (I don't remember which)

It's not just that he doesn't notice the game or the other players or the noise from the crowd. It's that he is down on his hands and knees. And he's just found this amazing insect that no one else even knows exists. No one else knows it's there, but Harley has.

That's the difference between my sweet, beautiful, funny, wonderful boy and the "normal" kids out there.

This week I met with the school psychologist for Madison County. They had done assessments with Harley and it was the "results show." I found out that he doesn't qualify for any assistance through the school. Not that they think he is fine, he just doesn't have the "right" problems to qualify. His verbal portion of his I.Q. is in the superior range (130+...Don't remember the exact number). His working memory portion of his I.Q. is a 70 - borderline retarded (an actual official designation - don't get pissed!). His combined I.Q. when all four parts are factored in is a 99, one point shy of exactly average. (Probably the only thing exactly average about him! :-D) His work also showed that he does have ADD. ***Gasp of Shock!*** It also showed a borderline/possible to high/probably of Asperger's Syndrome.

I thought I was prepared for the Asperger's. It's something that has been suspected for a long time. But I wasn't. Not emotionally. I have spent the last few days quietly - and not so quietly - falling apart at the seems.

I have felt so guilty about taking it this hard. It's not like I didn't sort of know already. It doesn't change anything. Nothing is different. But everything is different. I finally talked to Harley's math teacher whose son has Asperger's Syndrome. She is one of those people who has been saying, "You know, he needs to be assessed for Asperger's!" I apologized to her for being upset. She responded that it was o.k. That when her son was diagnosed, her pediatrician told her that they would go through the same reactions a parent goes through whose child has died. And I knew what she meant.

It's not that I feel like Harley has died. But something has. I am grieving. I don't want this for him. I don't want his life to be THIS DAMN HARD! I have walked around this week with this gaping hole in my chest. And I feel like it's going to consume me. It's all I can do to just hold myself together.

This is when I need people most, but there isn't anyone. Chris isn't thrilled, but he's not upset like I am. Mom and Dad are just like, yeah, well nothing new there. I've driven away my friend by going "Guy" on her. (A side effect of me getting depressed is that I have a tendency to get very angry.)

I feel like I am mourning all alone and people are looking at me going, what's wrong with you? Or they would if I let them see it.

I know, I know, I know it could be worse. How did LeeAnn bear it when she found out about Stephani? What did she do to get through it?

I went to the temple Wednesday. I saw Yaz there which was great. He was there with the other missionaries. He was able to just sit and listen for a few minutes. Then I made it into the Celestial Room. I didn't want to leave.

It's been hard trying to figure out how to deal with this. I can't talk about it to church friends, because I feel like I there is a huge stigma with this and I will be betraying Harley's confidence if I do that. I don't talk about it much with Mom and Dad. Mom never did have much patience with emotional stuff and I don't want to worry Dad.

I get really angry when people try to tell me that Harley couldn't possibly have Asperger's. I feel like they are totally dismissing everything that I am going through right now. I know they mean well, but it just pisses me off. I think later on I will be able to hear that and be grateful that his problems aren't so thoroughly obvious to others, but I'm not there yet.

I love my kid and I am very proud of him. I hope he always knows that.

Why is it that it is hardest to say what you mean to the people you love the most? I hurt someone I love today. Does it make it better to say that they hurt me first? Somehow I don't think it does. Does it make it better to say that I didn't mean to? What if I only meant to a little bit 'cause they hurt me first?
I'm sorry. I love you. I have to hope that that's enough, 'cause it's all I've got.
One day, I will learn how not to care when I hurt others. One day, I will learn how to be hard, callous. One day, I will learn how to shield myself or how to love people only half way so that I don't care so much.
And all of those things will likely happen BEFORE the day that I learn to keep my mouth shut and opinions to myself. Do I believe that you were wrong? Yep. Was it of vital importance that I ram that thought down your throat? No. That part was just because I can.
The ironic part is that it was never even REALLY you I was mad at. Life's a bitch, huh?

Ryan Adams - Desire from http://caribbeansoul.vox.com/

I love this song. I have listened to it over and over. It's beautiful.

I took the kids to church two Sundays ago and took some pictures of them with the beautiful trees. I also took some neat pictures of Chris and the kids here on the farm