Friday, July 29, 2011

Look Me in the Eye

I was up late last night (this morning), finishing this book. I had a hard time getting into it, at first. The author has Aspergers, and this is his memoir. He is the brother of Augusten Burroughs, who wrote Running With Scissors. They had a, interesting, but rather dysfunctional childhood (to say the least), and he had an undiagnosed Autism disorder on top of it. In fact he was not diagnosed until he was in his 40s. At the time he was growing up, there was no such thing as Aspergers.

Anyway, at first, I struggled with some of the issues he faced as a young kid, early teen. I think it hit too close to home, as Riley has experienced some of the same bullying, lack of understanding. Then there were the parts about these pranks he played-some quite dangerous, and I got a little worried. I relaxed when I realized that Riley doesn't have this author's obsession for machines.

So this guy has done some interesting things since dropping out of high school (that scares me too). He worked for KISS, he created Ace Frehley's exploding guitars. He worked making electronic toys, as a corporate manager, and he worked servicing expensive cars (his own business). Pretty amazing that he did so much, and did so well, without an education. It just proves that school is not for everybody. What he said though, was that Aspergers kind of helped him achieve. One Aspergerian trait is to become an expert at things that interest you, which is what he did. He read a lot and studied a lot, and taught himself. I can see that in Riley too-he's quite an expert in his favorite subject areas (Disney). When he wants to know about something, he looks it up on the computer, or his phone, and learns all about it.

Toward the end of the book though, he talks about his relationships, and his son (also on the spectrum), but the thing that I take the most relief from is that he said his social skills improved, as he matured. Having to work with people, at his jobs, helped him to learn better communication skills, and he has this awareness of that now, that's just amazing. He still can't read people, but he's learned enough about the social "rules," that he is much better at communicating, or being "presentable" to people, and not a turn off. Riley's social skills are fairly limited. He's unable to just strike up a conversation with a peer. He can talk to us, or his grandparents, or his friends (although I am not sure he initiates the conversations with his friends, he may just add on to their conversations), and even some of our friends, but it's always in reference to something he may have heard someone say, or to tell about something that interests him. The author also credited the adults in his life, for always engaging him, and keeping him from withdrawing. He didn't feel like he needed people. It was difficult for him to fit in, although he wanted to. I feel like I have to engage Riley. I have to draw him out. We have to show an interest in his interests, just to get him talking. He loves to have his alone time, and that's fine and good, but he needs to be engaged. We are lucky, because our friends and family engage him as well. He is not ignored. People greet him, and talk to him (well most anyway). I think people need to realize that if you get him talking about his interests, he's quite passionate about them, and will talk a lot. He's not good at chit chat pleasantries though.

This author also has issues with names. I found this so interesting, because Riley doesn't call anybody by their name. This author gives his own names to people, but Riley doesn't do that, he just doesn't call anybody anything, except his brother. He refers to people when talking, "my mom, my dad, my grandparents" etc, but he doesn't usually call us by those names. He just starts talking, or says, "um" to let you know he's going to speak. When we met with the woman from the Regional Center, she asked when that changed. It happened when he was transitioning from calling us mommy and daddy. I think maybe he thought we would be hurt if he stopped calling us mommy and daddy, opting instead for mom and dad. I tried explaining it to him, but it hasn't worked. Quinn transitioned with no problems at all, and will scream "MOM!" from his room. Riley will never do that. He will come to us. In a gift shop at the Museum of Natural History, in DC, he called me mom twice. He was looking at rocks and wanted my attention, and I was a little distance from him, and he said, "mom." He had to do it twice because the first time I didn't answer (as I am not used to him addressing me that way). I played it off and didn't make a big deal out of it, I simply went to look at his rocks, but inside I was happy.

I gave the book 3 stars on Goodreads, but I think I will go back and change it. I've been thinking about it a lot today, so it obviously made an impression. I appreciated the insight, and I am motivated to read his latest book.

PS: The author also had lots of trouble making eye contact as a kid-hence the title. Riley has a big problem with this too.

Tuesday, July 26, 2011

Riley bought this model of the White House, in DC. He built it the other day. He likes buildings. Perhaps he'll be an architect some day?

We had Riley's appointment at the Regional Center this morning. We were there two and a half hours. The case manager took lots of notes. She talked to Kevin and I and also to Riley. I think she got to see some of the things that we are concerned about: self esteem issues, eye contact, flat tone of voice, etc. He would not look her in the eye. He stared at some part of the very white wall the whole time he talked to her. She even prompted him to look at her a couple of times, but he just couldn't do it. We went through his entire birth/toddler/school years. They will do the psychological testing on him. I signed waivers to allow them to get his school records from the elementary school and the jr. high, and also his medical records. I believe she will contact his therapist as well. The whole process will take 120 days. It will take some time to get all of the information back (especially because the schools are not in session right now, and won't be until the end of August). The testing also needs to be completed. They will call us to schedule the testing. I just hope that the psychological testing can be done before school starts. So in 120 days, we should have a formal diagnosis and a plan of action.

I mentioned that we really think he is closer to being Aspergers, and I believe she agrees with that. She got a sense of his Disney obsession.

So it's not a lot of news, but it's something. She also mentioned that their services can be used for school purposes. They have people (case manager or advocate) that can attend meetings with us. I told her I wanted an IEP for him, and she noted that. We will still be keeping our Stanford appointment (whenever that comes up), but for now, I feel we have a start. I think help is on the way. It's slow going, but help is on the way.

Oh, and Riley tolerated the questions just fine. He was a bit slow to answer at first, but felt more comfortable as we went along. A couple of times he was very passionate in his responses (PE and his brother-he's really annoyed by his brother), and would talk a lot. She got the traditional "mmm hmmm" responses whenever he was told something he didn't agree with.

Oh, and here's another oh: When I spoke with Riley's doctor yesterday, about the asthma, I mentioned his sleep issues (he doesn't sleep well), and she thought it might be possible for him to participate in a sleep study. I mentioned it to him. He's not wild about it. If we go ahead with it, it will take a lot of talking through, to get him to participate. For now, I am making notes about his sleeping patterns.

Monday, July 25, 2011

Yes, Asthma

Riley built this model of the Leaning Tower of Pisa.

Riley's doctor called tonight. Looks like he does have a little asthma. We are going to use Flovent to try and get rid of the inflammation and the cough. If that does not work, he may need to see the asthma people.

I need to get the paperwork filled out for Riley's meeting at the Regional Center tomorrow. It is finally time.

- Posted using BlogPress from my iPhone

Tuesday, July 12, 2011


This is Riley, playing with an iPad2 at the Apple Store in NY.

Yesterday Riley had a physical. I discussed my concerns about anxiety with his doctor, and asked if it's possible that he could have asthma. He's been coughing (FOREVER), mostly at night, but apparently, also when he runs. He volunteered that tidbit in the doctor's office, and when I told him that would have been good to know during the school year (for PE!), he said, "well you never asked." He's right. I didn't. Anyway, he could have a little asthma. We need to make an appointment for a spirometry test. The doctor prescribed an inhaler to use as well, plus he could take anti-inflamatory medication.

While at the doctor's office yesterday, I got the spinal x-ray done for Riley and scheduled his bone density test. He's taking part in a study (Aromatase Inhibitor Study), through Lucile Packard, and the doctor needed those two tests done. Riley and Quinn see the same endocrinologist. The study involves Riley taking a pill each day. The pill will stop the production of estrogen, thus freezing his growth plate, which will allow him longer to grow. If it's successful for him, it may be something we can do with Quinn as well. Our boys are super lucky that their parents have given them BOTH short stature.

Saturday, July 9, 2011

Spending Time with a Friend

While Quinn was away last night at a birthday slumber party, and then another birthday party today, we took Riley to a local Japanese Bazaar. His friend was going to be there, and thought it would be fun for Riley to hang out with him while Kevin and I walked around.

Success! Riley enjoyed seeing his friend. There were games set up for the kids, so we bought him some tickets and let him be. It is always nice to see Riley enjoy something. No stomach aches, no complaining, just pure enjoyment.

The New York portion of our trip was a bit much for Riley. I don't think he was comfortable in NY, at all. He said he felt so small in such a big city. I think he enjoyed the things we did, but not all of the walking. He'd had the episode at the Metropolitan Museum of Art, with his toe, and it all went downhill for him from there. He did not enjoy the crowd for the 4th of July, and complained of a stomach ache. He had A LOT of stomach aches on this part of the trip. He has a physical on Monday, and I am going to ask his doctor about anxiety. I think he has anxiety issues, which causes the stomach aches. He even complained of a stomach ache in the cab, on the way to the airport. Once at the airport, and since then, no stomach aches. Things that make you go...hmmmmm.

Also, when we got home there was a letter waiting for us, from the Regional Center. Riley's turn is finally up! I called right away and talked to his case manager. We meet with her on July 26, and then I guess we go from there. Finally!! I am anxiously awaiting that appointment. They will do some testing for us. We are still keeping our Stanford appointment (whenever that will be), but this will help for now. In addition, we have decided to let Riley skip Scout camp this summer. He really doesn't want to go. He got sick there last year (anxiety I believe, now that I think about it), and now he doesn't want to go. I am not going to force him. We'll just get our money back, and then he'll stay home. Quinn goes at the same time Riley would have gone, so we will find some things to do, just the two of us-Kevin is going with Quinn for the first part of the week.

Saturday, July 2, 2011

We did not write this. It was just a coincidence that somebody else named Riley was having a party at Central Park, the same day we walked through with our Riley.

Remember what I said about Riley traveling well? Well, he USED to travel well, but I have to say he's been a pain in the ass this leg of our trip. He's not being very cooperative, and Autism sucks. I swear I think he's getting worse! He's complaining all the time, and crying. The crying just puts me over the edge. Ok, now I realize that we are dragging him all over the place, trying to see everything here in New York, and that's hard for him. He's tired. I get it. Why can't he just sulk and be moody like a typical teen? I just think he should have more energy for a boy of 13. It's frustrating, and I will be calling the fucking Regional Center when we get back to see when they can get us in there for TESTING?!?! I just want to scream. I need some answers and some coping techniques. This Autism thing sucks like you wouldn't believe-well those of you dealing with Autism would believe it. You know.

We had a big issue at the Metropolitan Museum of Art yesterday, when he stubbed his toe on a step. Boy that place sure echoes. It was high drama. Europeans like to stare. He did split his nail all the way across, on his big toe, but it's still there, and it didn't bleed. I am sure people thought that city rats were gnawing his toes off one by one, by his reaction to the situation. Quinn banged the hell out of his head at the history museum, on a railing he didn't see (we heard it), and he didn't carry on like Riley did.

Today was better, but now he's not feeling well. We came back to the hotel a little after 4, and he's been here ever since. We'll see how he feels tomorrow. We may have to move some things around. He seems to like the things that we have done, it's just the getting there that's been the issue. We are using lots of taxis now.

I know I am the worst mother ever. I should be more compassionate, but my patience is wearing thin because I feel he's getting worse. He can't just go with the flow. We are always talking, talking, talking, smoothing, smoothing, smoothing. It's exhausting.